tag:blogger.com,1999:blog-49418548120833910992024-03-16T01:09:09.560+00:00 Just MEME - Myalgic Encephalomyelitis - not just fatigue.
Views expressed are not to be taken as medical advice. Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.comBlogger134125tag:blogger.com,1999:blog-4941854812083391099.post-62892089008989407992018-10-19T11:51:00.001+01:002019-01-08T18:54:08.919+00:00Blog going into Hibernation As many folk now know, I have recently been selected to sit on the NICE Guideline Development Group for ”ME/CFS” as a lay member.<br />
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I have therefore decided, that I will put both this blog and the associated “Just ME” Facebook page, into hibernation for the duration of my service on the group.<br />
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I am still contactable via private messages, and I will still be around on social media, even if I say less out loud.<br />
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Onwards and Upwards<br />
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Sally K BurchSally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com2tag:blogger.com,1999:blog-4941854812083391099.post-29812951851393651082018-07-10T16:49:00.002+01:002018-07-10T23:37:27.637+01:00Yellow Card Confusion<b>Earlier this year Jim Shannon MP asked a parliamentary question about the Yellow Card system. The reply he got indicated that harms from the psychosocial therapies of CBT and GET could not be reported via the Yellow Card system.</b><br />
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Thus it seemed that there was no means by which data on the harms, caused by these therapies, could be officially reported. With no reports of harm being collated, it might therefore appear that these therapies are harmless.<br />
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Patients however have been reporting harms, and patient surveys from various charities have collated details of those harms. Yet these reports are not seen as official, and so CBT and GET are still widely reported as "safe", and not causing harm.<br />
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This is a problem. I wrote a blogpost about the issue in February this year:<br />
<a href="http://sallyjustme.blogspot.com/2018/02/yellow-cards-psycho-social-therapies.html" target="_blank">Yellow Cards & Psycho-Social Therapies</a><br />
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In June, the Countess of Mar asked another couple of questions, relating to the reporting of harms from psychiatric and psychological therapies, and in the latest answer we are told that the Yellow Card system can indeed be used for reporting harms from psychological treatments!<br />
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<b>This is now a very confusing situation. With the current review of NICE guidelines for the treatment of "ME/CFS" coming up, it is most important that harms from the current therapies are officially recorded.</b><br />
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The Yellow Card website has a space to submit questions. So I asked them the following:<br />
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<i>There seems to be some confusion over the Yellow card system. </i><br />
<i><br /></i>
<i>On 13th March 2018 Jim Shannon asked a parliamentary question (Medical Treatments: Safety: Written question - 132337) about reporting harms from the psychosocial interventions of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) and was told that: </i><br />
<i><br /></i>
<i>"As cognitive behaviour therapy and graded exercise therapy are both non-pharmaceutical or medical device treatments, they do not fall under the remit of the MHRA or the Yellow Card Scheme. Therefore, any harms associated with them would not be reported to the Yellow Card Scheme."</i><br />
<i><br /></i>
<i>Yet a more recent question asked on 20th June 2018, by the Countess of Mar (Medical Treatments: Side Effects: Written question - HL8829) indicates that the Yellow card system can in fact be used to report harms from such therapies. </i><br />
<i><br /></i>
<i>"The Yellow Card Scheme includes a facility to report suspected adverse incidents associated with products used in psychological treatments."</i><br />
<i><br /></i>
<i>Please can you let me know which of these of these answers is correct, and also under which heading harms from CBT and GET should be reported?</i><br />
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<tr><td class="tr-caption" style="text-align: center;">Today's Yellow Card Headings</td></tr>
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The medical establishment cannot just assume no harms have occurred if there has been no attempt made to collate them. Once the correct reporting channels are clarified, I think it is important that patients ask their GPs to use these channels to feed back on the outcomes of CBT and GET as applied to ME.<br />
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Thank you to both Jim Shannon MP and the Countess of Mar for following up on these issues.<br /><br /><b>Edit 11.30pm </b>- After online discussions with other ME advocates, there are some concerns that the most recent response referring to "products used in psychological treatments" applies only to the items used in therapy (whatever they may be) rather than the therapies themselves. Thus we may be no further forward with the issue of how to officially report harms from CBT & GET! <br />
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<b>Links:</b><br />
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Question by Jim Shannon MP:<br />
<a href="https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2018-03-13/132337/">https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2018-03-13/132337/</a><br />
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Questions by the Countess of Mar:<br />
<a href="https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Lords/2018-06-05/HL8366/">https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Lords/2018-06-05/HL8366/</a><br />
<a href="https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Lords/2018-06-20/HL8829/">https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Lords/2018-06-20/HL8829/</a><br />
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Yellow Card website:<br />
<a href="https://yellowcard.mhra.gov.uk/">https://yellowcard.mhra.gov.uk/</a><br />
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<br />Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com11tag:blogger.com,1999:blog-4941854812083391099.post-32887249611422796112018-05-11T16:33:00.001+01:002018-05-11T17:04:21.569+01:00Trust, in the context of ME<div class="separator" style="clear: both; text-align: center;">
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<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Trust issues run through every level of the ME experience. </span></b><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Being unable to trust our physical bodies to perform, is just the beginning. Trust, in the context of ME, goes way beyond personal, physical problems. The problem of trust, runs right to the top of our medical establishment.</span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>To put things in context, I'll start with a little of my own story.</b></span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Before ME, I trusted that my body would heal. </span><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Sure, a couple of weeks off work with a bug could be miserable, and the few weeks after returning to work might be tough, but I always expected to become fully functioning again. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">So in March 2012, when I became ill, I simply trusted that I would recover, and if necessary, that the health services would help me to do so.</span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">I went to the doctor, first just to get the necessary sick lines, and then with increasing frustration. The doctor told me I probably had "chronic fatigue", and that I should eat well and exercise. <i>"Three short brisk walks a day"</i> she said.</span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">I trusted this advice from my doctor. I had no reason, then, to doubt.</span></b><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">The exercise didn't help, of course. In fact it made me worse, but the doctor suggested I should continue. And here trust rears its head again, because my doctor trusted the guidelines from NICE, that she had read, and I in turn was supposed to trust her. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>My doubts started.</b> </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">So I went to the internet, and other patients told me a different story. <i>"Exercise can harm you!"</i>, <i>"Don't do it!"</i>, and <i>"Please be careful!"</i> were the amongst the flood of messages that came my way. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">A few months later, I saw an NHS consultant at a Fatigue Clinic in Belfast. Here, after a plethora of blood tests, I got some good advice: <i>"Do only 60% of what you can do without symptoms" </i>he said.<i> </i>But I got no diagnosis! With hindsight, I suspect this was so that I would not be pushed into Graded Exercise Therapy.</span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Did this consultant not trust other doctors to recognise my problems with exertion?</span></b><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Gradually, I withdrew from NHS care. The clinic offered me no further treatment, and a return to my doctor, only left me with antidepressants or cognitive behaviour therapy as options. I knew that neither of those would help, and thankfully had the courage to say <i>"No!"</i> despite feeling almost desperate enough to try anything! </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Next I had to run the gauntlet of the miraculous recovery stories told in the press. Reading these, it would seem to the ordinary person, that recovery from ME should be easy. Just try this miracle process, pill, or potion; say a few magic words; think positively and all will be well. Easy! <i>"What harm can it do to try it?"</i> </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>No wonder ME is not taken seriously by the healthy world at large. </b> </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Healthy people say things to us like: <i>"We all feel more tired as we get older you know",</i> or <i>"Everyone has to push themselves to get things done", </i>and in so doing they attempt to normalise a disease that is far from normal. I have heard many ME patients say, that those around them don't believe they have a serious illness. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">So why are first-hand stories from the chronically ill not trusted?</span></b><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">This issue goes well beyond ME, and suffice to say that the media have cashed in on the <i>"scrounger" </i>narrative to try and imply, that all those who are long-term ill are actually just malingering. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Sadly the even medical establishment now uses, Medically Unexplained Symptoms (MUS) to label patients who seem not to respond to standard treatments. The suggestion here is, that these supposedly attention-seeking patients, should be diverted to psychiatric services, and that doctors should stop trying to seek physical explanations for their condition. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">This is a tragedy in the making, and in my view everyone, including the currently-healthy, should be very distrustful of this label.</span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>Back to ME now. </b> </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">The current NICE guideline for "CFS/ME" shows that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are still recommended.. These psycho-socially based therapies come with no caveat to indicate that many patients have reported them to be harmful. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Can we not even trust NICE to listen to patients? </span></b><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">NICE say they are listening. Last year they indicated that they would not be reviewing the CG53 guideline, but after an outcry from patients, they agreed to review it, afterall. So far so good, but patients are still very concerned by the processes NICE will use, and whether NICE will be genuine in taking on board the concerns of ME patients. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">I have to wonder if NICE are swayed more by authority than by clear scientific evidence? </span></b><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">The PACE Trial (from 2011) was supposed to be the definitive trial to demonstrate whether the psycho-social therapies of CBT and GET were useful. The many problems with the PACE trial are well documented elsewhere, and those problems are so scientifically shocking that the PACE Trial should now carry no authority whatsoever. Yet, the PACE Trial authors continue to assert that these therapies work, and that no harms were found from their use. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Do NICE simply accept these assertions on trust? Have they not investigated the flaws of the PACE Trial for themselves? </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>Funding bodies also have a problem with patient trust.</b> </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">These organisations are supposed to choose the best research projects to fund. Yet, it seems that psycho-social researchers are the only ones to receive the bulk of government funding. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Do we really want yet more behavioural studies, whilst patients are dying in darkened rooms from severe ME? </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<br />
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<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">???</span></b></div>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">There is so much more that I could write about "trust" and the treatment of ME, but I'll admit my spoons are now running low. I will end by saying: </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">The days of blind trust in medical expertise are over. </span></b><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">My trust is now placed in those who are prepared to take on the system; to hold unsubstantiated assertions to account; and to campaign for the massive paradigm change that is required to ensure ME patients world over are treated fairly, and safely.</span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>My message to anyone with medical influence:</b></span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b><br /></b></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Do not ask us to trust that things will now be done right. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Instead demonstrate your determination to right the wrongs inflicted by a misplaced trust in the psycho-social paradigm; by facing those difficult decisions; and by finally overturning the utter neglect of decades past. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Thank you.</span></b><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>
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<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">***</span></b></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>PS</b> I have intentionally not referenced this piece so that it can be read easily. For more information I recommend the writings of <a href="http://www.virology.ws/mecfs/" target="_blank">David Tuller on Virology Blog</a>, and the patient discussions on the forum <a href="https://www.s4me.info/" target="_blank">Science 4 ME</a>. </span><br />
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Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com9tag:blogger.com,1999:blog-4941854812083391099.post-8275052706238038742018-03-02T16:25:00.000+00:002018-03-02T18:03:34.735+00:00Supporting Dr Myhill's PACE Trial complaint to the GMC<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "georgia" , "times new roman" , serif;">I have copied below what I wrote to the General Medical Council in support of Dr Myhill's complaint regarding the PACE trial authors. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<b><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Background:</span></b><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><b><br />Letters to the GMC:</b></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">Dr Myhill has asked those who have been affected by the PACE Trial write to the GMC and complain, giving their individualised stories. More details can be found on Dr Myhill's website here: </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<a href="http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors" target="_blank"><span style="font-family: "georgia" , "times new roman" , serif;"><b>Dr Myhill.co.uk: </b>My Complaint to the GMC about the PACE authors</span></a><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">I have decided to make my complaint public, so that others might also be encouraged to write. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">My letter used the template provided by Dr Myhill - it's downloadable from the link above. I just deleted out the sections highlighted in red, and replaced those sections with my own personal story. I tried to emphasise how the PACE Trial outcomes affected my treatment.</span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Dr Myhill says you do not need to be living in the UK to join this campaign, so where-ever you live, if you feel that the PACE Trial has affected how you have been treated, you can still write.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;"><b>Petition to support Dr Myhill's complaint:</b></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">There is also a petition that allows everyone, whether personally affected by the PACE Trial or not, to show their support. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="font-family: "georgia" , "times new roman" , serif;">At time of writing there are over 5000 signatures on the petition, but it would be fantastic if many more were collected. Please share this petition widely and encourage others to sign. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><a href="https://www.change.org/p/the-general-medical-council-i-am-showing-my-support-for-dr-myhill-s-complaint-to-the-gmc-about-the-pace-authors" target="_blank"><b>Change.org: </b>I am showing my support for Dr Myhill's complaint to the GMC about the PACE authors. </a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><b><span style="font-size: large;"><br /></span></b></span>
<span style="font-family: "georgia" , "times new roman" , serif;"><b><span style="font-size: large;">What I said:</span></b></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">(I said quite a bit in the end. I think short letters could be just as effective.)</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>
<i><b><span style="font-family: "georgia" , "times new roman" , serif;">"DETAILS OF SPECIFIC HARM DONE TO ME</span></b></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><b><span style="font-family: "georgia" , "times new roman" , serif;">1. I have suffered damage because GET (Graded Exercise Therapy) has been widely promoted as therapy for ME.</span></b></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">When I was first ill in March 2012, I attended my local GP surgery to seek advice and to obtain the required medical notes for my workplace. The GP advised me that “3 short brisk walks a day” would help me to recover, and that over time my body would gain strength allowing me to do more. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">Naturally I took this advice and started walking. Prior to illness I was a very active, person who loved to walk. We live on a small-holding and I used to walk my dogs every morning before work. I also had a busy teaching job where I was on my feet most of the day. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">So, I was shocked when I found that these prescribed short walks were causing me to get out of breath, and to feel light-headed and dizzy. As the days went by, I found I was able to walk shorter and shorter distances before I ended up in a heap on the ground trying to make the world stay still. Something was very wrong. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">In addition, I had increasing difficulty with my coordination, my balance, and my speech. I felt as though I was drunk (no alcohol involved obviously) and that I had to concentrate very hard just to walk to the bathroom without crashing into the walls. I developed a speech stoppage where the words in my head just wouldn’t formulate on my tongue. I was going rapidly down-hill and my body often felt on fire – as though it was constantly fighting flu. My muscles ached, and I felt physically miserable.</span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">Yet all the advice from the GP (a locum, so I don’t even remember her name) was still that exercise would help me. I blame the PACE trial, and the CG53 NICE guideline for this damaging advice from the GP. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">The PACE Trial results were given huge media prominence, and “exercise” was being widely touted as a cure for ME in the papers, in magazines and online, in the years around the time I fell ill. Indeed, these articles, uncorrected by the authors of the PACE trial, tended to portray ME patients as individuals with a simple lifestyle burn-out who just needed some basic lifestyle advice in order to recover. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">The guidance from NICE suggests that exercise in the 50- 70% range of max heart rate is helpful. I know for a normal healthy person, that exertion at this level this equates to “a brisk walk or gentle jog”. I wonder if that is the reason I was told to walk “briskly”? </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">The doctor did not suggest I use a heart-rate monitor, so she couldn’t have known that in fact this advice was taking my HR into the 90% + range of maximum effort. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">I know my heart rate reached these levels, because I later started monitoring my heart rate. I was a biology lecturer when working, so the way that exertion affected my heart rate was interesting to me. In 2015, I wrote this slide-share explaining the problems with the advice I was given on exercise in the hope that I could protect others from the harm exercise caused to me:</span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><a href="https://www.slideshare.net/SallyBurch/heart-rate-monitoring-and-nice-guideline-for-me" target="_blank"><span style="font-family: "georgia" , "times new roman" , serif;"> https://www.slideshare.net/SallyBurch/heart-rate-monitoring-and-nice-guideline-for-me </span></a></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">So although I did not receive formal GET, I consider that the advice I was given was based on the premise behind GET, and that the PACE trial conclusions influenced my GP towards promoting exercise. I also consider that such advice was wholly in appropriate and considerably damaging. My long-term health declined substantially because of the advice I was given. Indeed, it was more than 4 years later before my health returned to the point at which I was first given that advice to take brisk walks. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">Please note: My subsequent improvement was a result of private treatment. I took an off label anti-retroviral drug for a year. Without this, I believe the exercise advice I received early in my illness would have left my health permanently damaged.</span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">I should note here that I did not continue to harm myself in the face of such an obvious decline. I spoke to other patients online, who explained how harmful exercise can be, and as a result I tried to rest more and to reduce all exertions to a level below that which caused me harm. After stopping my prescribed walks, the rate at which I was declining slowed dramatically. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">I therefore believe that the PACE Trial, with its highly controversial confirmation of GET as a useful therapy, has harmed me. The PACE Trial was published just a year before I became ill. The fact that these results were so widely disseminated and loudly hailed as a ground breaking, meant that the GP I saw was totally confident when she advised me to exercise. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;"> I believe that the GP I saw had no idea that the exercise she prescribed me could in any way harm my long-term health. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><b><span style="font-family: "georgia" , "times new roman" , serif;">2. I have been turned down for benefits because the physical nature of my disease was not properly recognised.</span></b></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">I was turned down in the first instance for ESA. The interviewer during the assessment did not seem to understand the nature of ME and apparently did not believe that problems I talked about were real. Thankfully this decision was overturned when my GP and husband wrote letters describing how unfit to work I had become. Ironically the ESA decision letter arrived in the same week that the letter from my workplace Occupational Health team arrived declaring me “unfit to work for the foreseeable future”. (It seems despite the PACE trial that some professionals do understand.)</span></i><br />
<i><b><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></b></i>
<i><b><span style="font-family: "georgia" , "times new roman" , serif;">3. In addition, the general background environment that PACE has created surrounding ME has meant that I have suffered many forms of 'indirect' harm and distress:</span></b></i><br />
<i><b><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></b></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">•<span style="white-space: pre;"> </span>I was denied early retirement because my sudden onset ME was not regarded as a long-term condition, therefore it was judged that I was likely to recover before retirement age. Ironically if I had had a long history of sickness leave, I would have been more likely to be awarded early retirement. As it was, with a sudden onset, and with only the duration of illness that I could demonstrate at the time I applied, meant that my application was denied. The severe level of my disability did not seem to be taken into consideration. The promotion of the PACE therapies as a route to “recovery” meant that ME was regarded as easily treatable and not long-standing. I believe that the PACE trial therefore affected how my application was handled. Now 6 years since onset, I am still unable to work and remain in the Support Group for ESA. There is no facility to have that decision (to deny early retirement) reviewed despite the fact their assumption - that I would recover - has now proven erroneous. </span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
<i><span style="font-family: "georgia" , "times new roman" , serif;">•<span style="white-space: pre;"> </span>My workplace colleagues were unsympathetic. One told me my illness was controversial, and another berated me on the phone for my lack of determination to recover. I received none of the usual niceties on leaving the workplace due to ill-health. No card, no flowers, no acknowledgement of the 16 years I had worked for the college. I put this entirely down to the publicity generated after the publication of the PACE Trial papers. Many of the media stories (uncorrected by PACE authors) suggested that patients were malingering and just needed to exercise and “think positively” to get well again. "</span></i><br />
<i><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></i>
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<i><span style="font-family: "georgia" , "times new roman" , serif;">*******</span></i></div>
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<b><span style="font-family: "georgia" , "times new roman" , serif;">I hope by sharing these details, I will give others confidence to also share their stories. </span></b></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The influence of those promoting a psycho-social approach has been far-reaching and incredibly damaging to people with ME, not only because of the dubious conclusions reached, but also because the psycho-social approach has received so much research funding. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">When so much of the available funding goes into researching endless permutations of the psycho-social approach, very little funding gets left to research the real biomedical, and physiological problems underpinning ME.<br /><br />That needs to change. It is time the truth came out. <br /><br />The PACE Trial has harmed me. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The PACE Trial has harmed countless ME patients world over.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The PACE Trial authors need to be held to account </span><b style="font-family: Georgia, "Times New Roman", serif;">NOW.</b></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">If you have been affected please <a href="http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors" target="_blank">write your own letter to the GMC</a>. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Then encourage everyone you know to sign, <a href="https://www.change.org/p/the-general-medical-council-i-am-showing-my-support-for-dr-myhill-s-complaint-to-the-gmc-about-the-pace-authors" target="_blank">Dr Myhill's supporting petition.</a> </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><b>You might also like to contact your MP</b> to let them know about the recent debate in Westminster Hall led by Carol Monaghan MP, during which she so eloquently highlighted the ways in which the PACE Trial has harmed ME patients. </span><a href="https://goo.gl/rg68k5" style="font-family: Georgia, "Times New Roman", serif;" target="_blank">link to text</a> <a href="http://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11%3A01%3A20&out=11%3A31%3A59" style="font-family: Georgia, "Times New Roman", serif;" target="_blank">link to video </a></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /> Your MP might also be interested to know that the <a href="http://sallyjustme.blogspot.co.uk/2018/02/yellow-cards-psycho-social-therapies.html" target="_blank">Yellow Card system for reporting medical harms does not extend to psycho-social therapies</a>. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><b>And finally there is another related petition</b> running asking that CBT & GET are immediately removed from the NICE guidelines please also sign this petition: </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><a href="https://www.change.org/p/nice-stop-harming-me-cfs-patients-remove-cbt-get-out-of-nice-now" target="_blank"><b>Change.org:</b> Stop harming ME/CFS patients - take CBT/GET out of NICE guidelines NOW.</a></span></div>
Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com11tag:blogger.com,1999:blog-4941854812083391099.post-35121241083278244762018-02-27T16:49:00.001+00:002018-07-10T17:12:06.687+01:00Yellow Cards & Psycho-Social Therapies<b>“Why does the yellow card system for reporting medical harms, not extend to psycho-social therapies such as Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT)?”</b><br />
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This is the question I would like asked of the Health Minister. I have sent the information below to my MP, and also submitted it to Jeremy Corbyn’s online request for questions.<br />
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“Considering that exercise can be medically contraindicated, and that psychological manipulations can be abusive, surely it should be recognised that GET and CBT, when medically applied, could also cause harm, and that such therapies should therefore also be covered by the Yellow Card reporting system.<br />
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Details of the Yellow card system are given here: <a href="https://yellowcard.mhra.gov.uk/">https://yellowcard.mhra.gov.uk/</a><br />
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I became suddenly ill with myalgic encephalomyelitis (ME) in 2012. I was warned by other patients to avoid the NICE recommended therapies of GET and CBT. Unfortunately, I only heard this after I had suffered harm from attempting to “exercise” on the advice of my GP. <br />
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This advice was given by my GP with no cautionary explanations, because GET is recommended in the CG53 NICE guideline for “CFS/ME”. GET and CBT remain as recommended therapies despite repeated calls from patients to have them removed from the guideline. Patient surveys and petitions clearly demonstrate that harms from these therapies are widely recognised in patient circles.<br />
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One of the reasons given for leaving GET and CBT in place, is that there is no evidence to show that they cause harm. Yet, there is no means by which harms encountered by patients can be properly reported. The Yellow Card system for reporting pharmaceutical adverse effects apparently does not apply to therapies such as GET and CBT. <br />
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Further, the various trials, that purport to show that these therapies are of benefit, are lax about how “harm” is reported. Thus without specifically looking for harm, they find “no evidence”.<br />
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The PACE trial, and other trials based on the psycho-social premise that ME patients are no longer physically ill, are now being heavily questioned. As you are probably aware, Carol Monaghan MP led a debate in Westminster Hall on 20th February 2018 on the harms caused by the PACE trial (on CBT and GET) to ME patients. <br />
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It is time for these psycho-social therapies to be be properly challenged. <br />
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Psycho-social therapies must no longer be hidden behind a system that prohibits the proper reporting of the harm they cause. They must be open to the same medical scrutiny as pharmacological treatments.<br />
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So please ask:<br />
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<b>Why does the yellow card system for reporting medical harms, not extend to psycho-social therapies such as Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT)? </b><br />
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And:<br />
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<b>What possible reason could there be for protecting these psycho-social therapies from scrutiny?</b>”<br />
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<i>UPDATE: 10/3/18 Jim Shannon MP asked </i><i>the question about the Yellow cards here:</i><br />
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<i>Top of page 11, question no 98:<br /><a href="https://publications.parliament.uk/pa/cm/cmquestionbook/noq.pdf">https://publications.parliament.uk/pa/cm/cmquestionbook/noq.pdf</a></i><br />
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<i>Questions tabled on Monday 5 March 2018</i><br />
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<i>"</i><i>98 Jim Shannon (Strangford): To ask the Secretary of State for Health and Social Care, for what reason the yellow card system for reporting medical harms does not include (a) Graded Exercise Therapy and (b) Cognitive Behaviour Therapy. (130828)"</i><br />
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<i>UPDATE - A further blog post 10/7/18 <a href="http://sallyjustme.blogspot.com/2018/07/yellow-card-confusion.html" target="_blank">Yellow Card Confusion</a></i><br />
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<br />Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com16tag:blogger.com,1999:blog-4941854812083391099.post-57355218691472541552018-01-16T22:56:00.001+00:002018-01-18T14:35:59.407+00:00NICE stakeholder meeting for CG53<span style="font-family: "georgia" , "times new roman" , serif;">Today I attended the stakeholder engagement meeting for the NICE CG53 guideline on "CFS/ME".<br /><br />Below I have copied the report I wrote afterwards, and the document I wrote with points I wanted to raise at the meeting. (Both are also shared as Notes on my Facebook wall).</span><br />
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<b><span style="color: #1d2129; font-family: inherit , serif; font-size: 14pt;">NICE stakeholder meeting for CG53: 16<sup>th</sup> January 2018<br />Impressions from the meeting by Sally Burch<o:p></o:p></span></b><br />
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<span style="color: #1d2129; font-size: 12pt;">The meeting started with some explanations of the process of review. It was explained that, in a break from the traditional process, this engagement meeting was being held before any scoping document was produced. There were 60 or so people in attendance and overall the meeting had a positive feel to it.</span></div>
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<span style="color: #1d2129; font-family: inherit , serif; font-size: 12pt;"><br />We were welcomed to the meeting by Philip Alderson, the Clinical Advisor for NICE. Then Mark Baker, the Centre for Guidelines Director at NICE, explained about the guideline update. One thing he said struck me as very important. He said, "We are going to tear it up and start again. We won't allow it to look the same." I found this reassuring. Indeed, he reiterated several times that the guideline was to be replaced in full. He also said that a re-naming of the guideline would be possible. <o:p></o:p></span></div>
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<span style="color: #1d2129; font-family: inherit , serif; font-size: 12pt;">Norma O’Flynn, the Chief Operating Officer for the National Guideline Centre, explained how NICE contract with the Royal College of Physicians to develop guidance. She said that there were a staff of fifty plus, and that they provided the technical expertise to support the guideline committee, and to manage the development of guidelines according to NICE processes.<o:p></o:p></span></div>
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<span style="color: #1d2129; font-family: inherit , serif; font-size: 12pt;">Norma O’Flynn gave a time line for the development of the new guideline. This included a "Scope Stakeholder Workshop" on the 25th May, and a Scope consultation between 21st June and 19th July. An advertisement for the guideline committee members will also run over the same period. The first guideline committee meetings should happen from November 2018, and as most guidelines take about 70 weeks to be developed, this should mean the guideline consultation taking place about April 2020.<o:p></o:p></span></div>
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<span style="color: #1d2129; font-family: inherit , serif; font-size: 12pt;">Victoria Thomas, the Head of the Public Involvement Programme for NICE, told us that in this update they would be “starting with the perspective of the patient”. She explained that there would be four patient members on the guideline development committee, and that individual patients (or carers) could apply as themselves, ie they do not need to be attached to a stakeholder group to be on the committee.<br /><br /><o:p></o:p></span></div>
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<span style="color: #1d2129; font-family: inherit , serif; font-size: 12pt;">After a few questions from the floor, the different tables had time to feed back to NICE representatives. Some pre-determined questions on the guideline were posed, and we were encouraged to look forwards rather than backwards. However, in our discussions some of the problems with the old guideline needed to be raised in order to highlight how a new guideline could be made better.<br /><br />The table I was at managed to cover many important issues, and I think it is fair to say that the patient voice was most definitely being heard. I brought with me two documents. The first was a document I wrote listing issues I thought important for the meeting. Most of these points were in fact raised by others at the table, meaning that I didn’t need to make each point myself. The second document was a print out of Linda Crowhurst’s Facebook post entitled “An Honest Appraisal”. I left both documents with the facilitator at our table, and also handed a copy of each document to Mark Baker after the meeting.<o:p></o:p></span><br />
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<span style="color: #1d2129; font-family: inherit , serif; font-size: 12pt;">I left the meeting exhausted, but cautiously optimistic about how this development process might work. Perhaps advocates more seasoned than I, will say that I am being naïve. Perhaps I am being naïve, but I can’t deny it: this meeting went considerably better than I was expecting. I guess the proof of the pudding will be in the eating, but for now I am pleased that I could say the things I wanted to say, and that my voice was heard.<o:p></o:p></span></div>
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<span style="color: #1d2129; font-size: 12pt;">Onwards and upwards? I hope so. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw-j-eaZVJVhNMRL1AoeCDrKuWx1F5lrO3oXvnIPAOz4Dw05VOQBo-f9KeRzQSL0BBGOJG9ENbirwzIGgoZz6n7HgcS1DAwJDOCgFJNtkcXIsv_X9DDxJciORFPHbCW1dqbMeYQg5UpeOO/s1600/26814954_1625474400844707_6016794160234967683_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="544" data-original-width="725" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw-j-eaZVJVhNMRL1AoeCDrKuWx1F5lrO3oXvnIPAOz4Dw05VOQBo-f9KeRzQSL0BBGOJG9ENbirwzIGgoZz6n7HgcS1DAwJDOCgFJNtkcXIsv_X9DDxJciORFPHbCW1dqbMeYQg5UpeOO/s320/26814954_1625474400844707_6016794160234967683_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">With Mark Baker and Andy Hugh.<br />
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<b><span style="font-family: "bookman old style" , serif; font-size: 16pt; line-height: 22.8267px;">NICE Stakeholder Engagement Meeting for CG53</span></b><b><span style="font-family: "bookman old style" , serif; font-size: 12pt; line-height: 17.12px;"> </span></b><span style="font-family: "bookman old style" , serif; font-size: 12pt; line-height: 17.12px;">16<sup>th</sup> January 2018<b><br />Points to consider from Sally Burch </b></span><br />
<span style="font-family: "bookman old style" , serif; font-size: 12pt; line-height: 17.12px;">Patient Representative for Hope 4 ME & Fibro NI</span><b><span style="font-family: "bookman old style" , serif; font-size: 6pt; line-height: 8.56px;"><o:p></o:p></span></b><br />
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<span style="font-family: "bookman old style" , serif;">1.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Remove all reference to “fatigue” from the name of Myalgic Encephalomyelitis. </span></b><span style="font-family: "bookman old style" , serif;"> The current prefix of “chronic fatigue syndrome” gives a misleading impression about the aetiology of the disease, and further encourages GPs to use the “CFS/ME” diagnosis for idiopathic fatigue. The disease of ME should not be inadvertently conflated with lifestyle fatigue, nor fatigue originating from other undiagnosed issues. <o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">2.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Remove CBT & GET from the CG53 guideline</span></b><span style="font-family: "bookman old style" , serif;">. This should be with immediate effect and with substantial publicity. Reason: CBT & GET no longer have a supporting evidence base for long-term efficacy, and there is now considerable evidence indicating harm from their implementation. Further these therapies are based on an outdated psycho-social premise for ME that is without evidence to support it.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">3.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Advice given to the patient should be honest and transparent. </span></b><span style="font-family: "bookman old style" , serif;">Patients would prefer to know that their condition is potentially life-long, debilitating, and requiring major life-style change. By avoiding an early suggestion of ME as a diagnosis, patients are left vulnerable to doing serious harm to their long-term condition by their own natural attempts to continue with their current lifestyles. For some this lack of advice means plunging into irreversible and severe ME.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">4.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Patient Protection from HARM must be paramount:</span></b><span style="font-family: "bookman old style" , serif;"> Appropriate advice to protect the patient from iatrogenic harm should be included in the guideline. This is especially important for the most severely affected. I suggest:<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">a.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Advising GPs to facilitate requested home visits</span></b><span style="font-family: "bookman old style" , serif;"> for moderate and severe ME patients. GPs should be aware that they may not observe their patients’ problems first hand, due to the delayed nature of symptom exacerbation in ME. Appearing “okay”, on a previous visit does not mean that the visit was without harmful after-effects.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">b.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Advising Social Services that manifestations of ME could be mistakenly regarded as a safe-guarding issue.</span></b><span style="font-family: "bookman old style" , serif;"> Eg Patient may be seen in a darkened, sound-proofed room, with carers who may appear over-protective. This is to be expected when ME is severe.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">c.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Advising GPs to list the potential manifestations of ME</span></b><span style="font-family: "bookman old style" , serif;"> in their letters to schools, social services and employers. This should include advice on the potentially long-term nature of ME, with specific advice to avoid any prescriptive “phased return” to normal activities.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">d.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Advising hospital staff, including A&E departments, on the need to accommodate ME patients</span></b><span style="font-family: "bookman old style" , serif;"> as they seek to avoid sensory over-stimulation by normal hospital activities. Requests to be placed in a quiet area with low lighting should be honoured with minimum fuss.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">e.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Advising all professionals to consult with severe patients (or their spokespersons) on each patient’s specific needs</span></b><span style="font-family: "bookman old style" , serif;"> and considerations, prior to any non-urgent interaction. This due to the potential for simple, normally insignificant, events to cause real harm to the patient. Risk assessments.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">f.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Advising all health professionals to carefully weigh the need for additional medical investigation</span></b><span style="font-family: "bookman old style" , serif;"> <b>or procedures</b> with: i) the need to detect or treat a comorbid condition, ii) the potential harm caused by the procedure to the patient’s ME severity and iii) the patient’s views. However, no medical investigation should be ruled out simply because of an existing diagnosis of ME.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">g.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Advising GPs that “Rest and Recuperation” is appropriate advice for patients suspected of having ME. </span></b><span style="font-family: "bookman old style" , serif;">Assuming no properly evidence-based treatments are yet available, the advice to rest as much as is required to alleviate symptoms, should be given. Ideally, this should be accompanied by practical advice on how to reduce energy expenditure, and should be suggested as a precautionary measure even prior to formal diagnosis.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">h.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Management advice on the use of Heart Rate monitors should be expanded to include warnings. </span></b><span style="font-family: "bookman old style" , serif;">GPs often don’t recognise that ME patients’ heart rates respond inappropriately to exertion. The current exercise advice of 50-70% of maxHR requires normal individuals to take a brisk walk or gentle jog, yet an ME patient might hit this range by simply sitting up in bed. Unfortunately, a busy GP may not recognise how differently ME patients are affected by exertion, and so suggest a “brisk walk” for his/her patient. The aim of any heartrate monitoring strategy for ME patients should be to keep heart rate low.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">5.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">The make-up of the Guideline Development Committee </span></b><span style="font-family: "bookman old style" , serif;">is going to be critical to the nature of the ultimate new guideline. Patients need assurance that the selection of this committee is free from bias. I am of the view that:<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">a.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Psychiatry should play no part in creating the primary guideline for ME. </span></b><span style="font-family: "bookman old style" , serif;">ME has a physiological aetiology. <b> </b>The issue of counselling for secondary mental health issues should not require a psychiatrist to sit on the development group.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">b.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Those who benefit financially, or reputationally, from the continuance of the current CBT/GET</span></b><span style="font-family: "bookman old style" , serif;"> treatment paradigm should have no place on the development group.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">c.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Patients and carers who have direct experience of Severe ME should be consulted </span></b><span style="font-family: "bookman old style" , serif;">on the care advice offered for patients with the extreme sensitivities of Severe ME.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">d.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">An individual with clear understanding of statistics and research methodology should be included in the group. </span></b><span style="font-family: "bookman old style" , serif;">This is to ensure that an appropriately critical approach can be utilised on the papers to be considered as evidence. This individual should also consider any published criticisms of existing peer-reviewed papers.<o:p></o:p></span></div>
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<span style="font-family: "bookman old style" , serif;">e.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><b><span style="font-family: "bookman old style" , serif;">Those who produced the existing guideline should be excluded from the new development group, </span></b><span style="font-family: "bookman old style" , serif;">in order to ensure that a new approach can be properly considered.<o:p></o:p></span></div>
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<i><span style="font-family: "bookman old style" , serif;">6.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; font-style: normal; line-height: normal;"> </span></span></i><b><span style="font-family: "bookman old style" , serif;">When the new guideline is issued, there should be extensive publicity through out the medical world highlighting the change of approach. </span></b><span style="font-family: "bookman old style" , serif;">This should include an insistence that the discredited psychosocial approaches to ME are abandoned by all health care practitioners. References to the psychosocial approaches of CBT and GET should also be removed from all health service literature and webpages.<i><o:p></o:p></i></span></div>
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<b><span style="font-family: "bookman old style" , serif;">NICE must leave no room for doubt about the physiological nature of ME.</span></b><br />
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<b><i><span style="font-family: "bookman old style" , serif; font-size: 10pt; line-height: 14.2667px;">Note:</span></i></b><span style="font-family: "bookman old style" , serif; font-size: 10pt; line-height: 14.2667px;"><i> I was lucky to have the internet & other patients to advise me to stop taking the “brisk walks” advised by my GP. I was also fortunate to gain improvement to my quality of life by taking an off-label anti-retroviral drug privately. BUT healthcare should not rely on luck! I hope the new NICE recommendations for ME will soon be ones that patients can turn to with confidence. </i><br /><br />[Edited 18th January to add the picture and this link to Linda Crowhurst's piece <a href="https://www.facebook.com/photo.php?fbid=1793190847418316&set=a.366101403460608.83092.100001822547120&type=3&theater" target="_blank">"An Honest Appraisal"</a>]</span></div>
Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com21tag:blogger.com,1999:blog-4941854812083391099.post-22201890809099111052017-05-12T08:01:00.000+01:002017-05-12T14:56:37.971+01:00Why? Just Why?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSLutlW41gFFOdPPHOZlNf9hUCeICWgbL9MGz216j4f7AN_PYC1xsiBHBVaVueHEPZ9sAFDBao1T5djJCAAauRT-LNR7PA3DvfrMksQd_0OA9JRiKIbESi8YFb0vOVXeeNxxuLmIIqeIZm/s1600/why.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="173" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSLutlW41gFFOdPPHOZlNf9hUCeICWgbL9MGz216j4f7AN_PYC1xsiBHBVaVueHEPZ9sAFDBao1T5djJCAAauRT-LNR7PA3DvfrMksQd_0OA9JRiKIbESi8YFb0vOVXeeNxxuLmIIqeIZm/s200/why.png" width="200" /></a><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">It's one thing to be told you have a disease that is not yet fully understood, while doctors do their best to seek out treatments. </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">It is quite another thing to be told your life-altering illness is only a self-inflicted burn-out, and that you just need to take more exercise and think more positively. I joke not. Many patients report this type of attitude from their medical professionals.</span><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">The problem is this: NICE guidelines recommend Graded Exercise Therapy & Cognitive Behaviour Therapy as the best available treatments for "CFS/ME". </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Some doctors interpret such advice as: </span><i style="color: #20124d; font-family: georgia, "times new roman", serif;">"Get a move on!" </i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">and </span><i style="color: #20124d; font-family: georgia, "times new roman", serif;">"Stop dwelling on things!"</i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"> </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Do these doctors not realise that ME can be serious? Indeed, so serious that it can render the sufferer helpless and in a an enduring state of physical misery? </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Do these doctors not recognise that exertion can make the health of fragile patients plummet? </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Do they not notice?<br /><br />If not, why not? </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">The ME community has been saying for years that exertion harms their health - sometimes permanently. </span><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Yet still the NICE recommendation for exercise remains. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br />And the newly ill are still given advice that could cause them long term disability. </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">And time goes on and NICE guidelines are still not changed.<br /><br />We are told the guidelines will be looked at in 2017 to see if they need to be reviewed, but there appears to be no urgency to this process. </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">We also have no reassurance that the experts being consulted on the decision are cognisant of the harms of exercise for ME. </span><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Are these reviewers taking new research seriously? </span><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Are they prepared to ditch evidence from trials that fail to stand up to scientific scrutiny? </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">And if so, why are changes happening so slowly? </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br />Now, here we are in the month of May again. Still trying to "raise awareness", still blogging, still protesting, and still campaigning. </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Yet little has changed for patients in consulting rooms across the country.</span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>Why is that? Why? Just Why? </b></span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>PS</b> I read somewhere recently:</span><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"> </span><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">If you want to change a person's established view point, that reasoned arguments and referenced literature have less effect than simple questions. So I have chosen not to expand this post with detail, but simply to ask the question "Why?".</span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">My post for ME Awareness Day 2017 & #May12BlogBomb</span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br />Other posts can be viewed on the <a href="http://sallyjustme.blogspot.com/2017/05/May12BlogBomb-List-2017.html" target="_blank">Link List for #May12BlogBomb 2017</a></span>Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com4tag:blogger.com,1999:blog-4941854812083391099.post-80566205711106644542017-05-12T08:00:00.000+01:002017-05-29T15:56:48.220+01:00Link List for #May12BlogBomb 2017<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw1w-jKNoAMC0TWaPcx8m14xwatG9pYY8q1H2YGstlHekdvj4xlwl6YQ5JIb2-9p0gB4wgivJDwaLzF-TbCLEN7YX8yrFepcnrvMLKpoQSXUBXnoYEskYaDGQIetBdNjK6aMBVb4m0yoEm/s1600/May12Blogbombii.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw1w-jKNoAMC0TWaPcx8m14xwatG9pYY8q1H2YGstlHekdvj4xlwl6YQ5JIb2-9p0gB4wgivJDwaLzF-TbCLEN7YX8yrFepcnrvMLKpoQSXUBXnoYEskYaDGQIetBdNjK6aMBVb4m0yoEm/s320/May12Blogbombii.jpg" width="320" /></a><b></b><br />
<b><b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">#May12BlogBomb </span></b></b><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>A new collation of blog posts written for May 12th Awareness Day 2017.</b> </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br />If you would like to submit a blogpost to the list? <a href="http://sallyjustme.blogspot.co.uk/2017/04/may12blogbomb.html" target="_blank">Please follow this link.</a><br /><br />If you want to know more on the the history of May 12th as Awareness Day? <a href="http://www.meadvocacy.org/may_12_2017_international_awareness_day_25th_anniversary" target="_blank">See this post from ME Advocacy.</a></span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">If you are sharing blogposts on social media, please use the tag <b>#May12BlogBomb</b></span><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"> - the tag to amplify the voice of all May Awareness Bloggers!</span><br />
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<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">My Awareness Post:</span></b><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Just ME: <a href="http://sallyjustme.blogspot.com/2017/05/why-just-why.html" target="_blank">Why? Just Why?</a></span><br />
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<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Guest Posts on Just ME:</span></b><br />
<span style="color: #20124d;"><b><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></b><span style="font-family: "georgia" , "times new roman" , serif;">Just ME: <a href="http://sallyjustme.blogspot.com/2017/05/merely-existing-is-me-onwards.html" target="_blank">Guest Post from Merely Existing is ME - Onwards</a></span></span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Just ME: <a href="http://sallyjustme.blogspot.com/2017/05/courage-by-Wendy.html" target="_blank">Guest Post by Wendy: Courage</a></span><br />
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<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Posts on Independent Blogs: </span></b><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Chronically Siobhan: <a href="https://chronicallysiobhan.com/2017/05/12/may12blogbomb-heartbroken/" target="_blank">Heartbroken</a></span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Crazypurplemama: <a href="https://crazypurplemama.blog/2017/05/12/its-all-about-me-internationalnursesday-internationalmeawarenessday/" target="_blank">It's all about ME</a> </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">February Stars: <a href="https://februarystars.co.uk/2017/05/awareness-month-for-fibromyalgia-lyme-disease-mecfs/" target="_blank">Why we need an awareness month for Fibromyalgia, Lyme disease & ME/CFS</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">February Stars: <a href="https://februarystars.co.uk/2017/05/5-things-i-wish-people-knew-fibromyalgia-mecfs/" target="_blank">5 things I wish people knew about Fibromyalgia & ME/CFS</a></span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Huffington Post Melanie Schickedanz: <a href="http://www.huffingtonpost.de/melanie-schickedanz/12-mai---internationaler-tag-des-chronischen-erschopfungssyndroms_b_16483794.html" target="_blank">"12. Mai - Internationaler Tag des Chronischen Erschöpfungssyndroms"</a> (German)</span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Laura's Pen:<a href="https://laurachamberlain.co.uk/2017/05/12/me-awareness-day-a-comic-a-poem-a-video-diary-and-a-word-cloud/" target="_blank"> ME Awareness Day - A comic, a poem, a video diary and a word cloud</a></span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Lennae's World: <a href="https://lennaesworld.com/2017/05/02/walk-for-me/" target="_blank">Walk for ME!</a> </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Lennae's World: <a href="https://lennaesworld.com/2017/05/11/me-awareness-2017/" target="_blank">ME Awareness 2017</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Liebjabberings:<a href="https://liebjabberings.wordpress.com/2017/05/12/celebrate-may-12-international-mecfs-awareness-day/" target="_blank"> Celebrate May 12 International ME/CFS AWARENESS Day</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Lightening the Shadow: <a href="http://www.darlanagel.com/blog/darlas-bedfest-submission-memoir-excerpt" target="_blank">Darla's BedFest Submission: Memoir Excerpt</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Little Wings: <a href="http://corinaduyn.blogspot.ie/2017/05/meme-is-ready-for-dublin-protest.html" target="_blank">MEme is ready for the Dublin Protest</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Living with ME - <a href="http://wp.me/p4dXAG-th" target="_blank">My husbands perspective</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: #20124d;">ME/CFS Self-Help Guru: </span><a href="http://www.mecfsselfhelpguru.com/2017/05/what-living-well-with-mecfs-really-means.html" target="_blank">What Living Well with ME/CFS Really Means</a><br /><br />Mindfullly Evie: <a href="http://mindfullyevie.com/stories-behind-cant-see/" target="_blank">The stories behind what you can't see</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">My A-Z of M.E. - <a href="http://roslemarchand.blogspot.fr/2017/05/may-2017-awareness-month.html" target="_blank">May 2017 awareness month</a></span></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Not Just Tired: <a href="http://notjusttired.com/2017/05/12/simple-ways-to-raise-awareness-of-mecfs/" target="_blank">Simple ways to raise awareness of ME/CFS</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">StopGET: <a href="http://www.stopget.org/2017/05/missing-more-the-exercise-broke-me/" target="_blank">Missing More, the exercise broke me</a><br /><br />SupineSublime: <a href="https://supinesublime.wordpress.com/2017/05/12/textling-78/" target="_blank">Textling #78</a></span></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">The Martian Princess Chronicles: <a href="https://themartianprincesschronicles.com/2017/04/19/3-reasons-i-am-grateful-to-my-fibromyalgia/" target="_blank">3 Reasons Why I Am Grateful To My Fibromyalgia</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">This Spoonie Speaks:<a href="http://www.thisspooniespeaks.com/2017/04/eds-awareness-month-blog-challenge.html" target="_blank"> EDS Awareness Month Blog Challenge</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Tips for ME: <a href="https://tipsforme.wordpress.com/2017/05/12/what-would-florence-do/" target="_blank">What Would Florence Do?</a></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Verbena Days: <a href="https://verbenadays.wordpress.com/2017/05/01/me-awareness-month/" target="_blank">ME Awareness Month</a></span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>Previous #May12BlogBomb Link Lists </b>can be found on these pages:</span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif; font-size: large;"><a href="http://sallyjustme.blogspot.co.uk/2016/05/blogbomb-link-list-2016.html" target="_blank">2016</a> - <a href="http://sallyjustme.blogspot.co.uk/2015/05/may12blogbomb-2015-link-list.html" target="_blank">2015</a> - <a href="http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html" target="_blank">2014 </a></span><br />
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</b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>Thank you to all the bloggers past and present who have contributed to this endeavour. </b> </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /></span>Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com2tag:blogger.com,1999:blog-4941854812083391099.post-81774175073325726972017-05-12T07:30:00.000+01:002017-05-12T07:30:03.495+01:00Guest Post from Merely Existing is ME: Onwards<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrCwMTjpX80vcWbVUsTVgRrq-4qKus5Y3obz6GnKbTw1qPgbL9JwafPal_75kwgEa3iRNv87cpva68SWLvhwfBH9EL76izWHRUFb5xDXgJjtQm5p3CNolRYLDOnERx0t4KAkhdEf1zPKzo/s1600/ME15.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrCwMTjpX80vcWbVUsTVgRrq-4qKus5Y3obz6GnKbTw1qPgbL9JwafPal_75kwgEa3iRNv87cpva68SWLvhwfBH9EL76izWHRUFb5xDXgJjtQm5p3CNolRYLDOnERx0t4KAkhdEf1zPKzo/s200/ME15.jpg" width="200" /></a><i><span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">Guest post by MerelyExisting is ME for #May12BlogBomb 2017</span></i><br />
<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><br /> @tweetsforMECFS <br /><br /><b>Previous #May12BlogBomb posts:</b><br />2016 <a href="http://sallyjustme.blogspot.co.uk/2016/05/guest-post-by-merelyexistingisme.html" target="_blank">I wish... </a><br />2015 <a href="http://sallyjustme.blogspot.co.uk/2015/05/we-are-warriors.html" target="_blank">We Are Warriors</a> </span><br />
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif; font-size: large;"><b>Onwards towards new realities<br /></b></span><br />
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">Firstly I would like to say a big hello to everyone as I’ve been too unwell to manage any attempts at social media for the best part of a year, but I really wanted to make contact and post (a brief) something for this year’s ME Awareness campaign.</span><br />
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">So what’s happening? I do feel so out of touch with everyone and everything…</span><br />
<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">For me its three and a half years now since my world turned upside down from ME/CFS and I honestly had no idea just how unwell and incapacitated it is possible to feel, BUT with very aggressive rest and extreme pacing I am sometimes able to manage brief spells of feeling slightly less deathly… HOORAH !</span><br />
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">Prior to December 2013 I was working full-time in healthcare and now I am about to enter ill-health retirement almost two decades too early, which is not something I ever imagined happening.</span><br />
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">I don’t know what the future holds but I am learning a new reality, to take and deal with each minute, hour, day as it comes, and I keep hope for those moments when symptoms ease a little.</span><br />
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">Myalgic Encephalomyelitis is REAL, its PHYSICAL and it destroys lives so please help in raising awareness and support… so that we can start living again and not just existing.</span><br />
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>#May12BlogBomb 2017</b></span><br />
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><b>MerelyExisting is ME @tweetsforMECFS </b></span>Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com0tag:blogger.com,1999:blog-4941854812083391099.post-48574396231529406182017-05-12T07:00:00.000+01:002017-05-12T07:00:16.871+01:00Guest post by Wendy: Courage<div class="x_MsoNormal" style="margin: 0in 0in 0.0001pt; text-align: center;">
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<i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Guest post from Wendy for <b>#May12BlogBomb</b> 2017 on courage and how it relates to having a long term debilitating illness:</span></i></div>
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<b><i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Courage! What makes a king out of a slave? Courage! What makes the flag on the mast to wave? Courage! What makes the elephant charge his tusk in the misty mist, or the dusky dusk? What makes the muskrat guard his musk? Courage! What makes the sphinx the seventh wonder? Courage! What makes the dawn come up like thunder? Courage! What makes the Hottentot so hot? What puts the "ape" in apricot? What have they got that I ain't got? Cowardly Lion Monologue on the Wizard of OZ</span></i></b></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Courage is the ability to do something that frightens one, as in <i>"she called on all her courage to face the ordeal."</i> Or strength in the face of pain or grief, as in <i>"he fought his illness with great courage."</i></span></div>
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<b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><a href="https://www.merriam-webster.com/dictionary/courage" rel="noopener noreferrer" target="_blank">Courage</a>, <a href="https://www.merriam-webster.com/dictionary/mettle" rel="noopener noreferrer" target="_blank">Mettle</a>, <a href="https://www.merriam-webster.com/dictionary/spirit" rel="noopener noreferrer" target="_blank">Spirit</a>, <a href="https://www.merriam-webster.com/dictionary/resolution" rel="noopener noreferrer" target="_blank">Resolution</a>, <a href="https://www.merriam-webster.com/dictionary/tenacity" rel="noopener noreferrer" target="_blank">Tenacity</a></span></b></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">mean mental or moral strength to resist opposition, danger, or hardship.</span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b><a href="https://www.merriam-webster.com/dictionary/courage" rel="noopener noreferrer" target="_blank">Courage</a> </b>implies firmness of mind and will in the face of danger or extreme difficulty. “<i>the<em> courage to support unpopular causes”</em></i></span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b><a href="https://www.merriam-webster.com/dictionary/mettle" rel="noopener noreferrer" target="_blank">Mettle</a> </b>suggests an ingrained capacity for meeting strain or difficulty with fortitude and resilience. “<em>a challenge that will test your mettle”</em></span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><a href="https://www.merriam-webster.com/dictionary/spirit" rel="noopener noreferrer" target="_blank"><b>Spirit</b></a> also suggests a quality of temperament enabling one to hold one's own or keep up one's morale when opposed or threatened. “<em>her spirit was unbroken by failure”</em></span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b><a href="https://www.merriam-webster.com/dictionary/resolution" rel="noopener noreferrer" target="_blank">Resolution</a> </b>stresses firm determination to achieve one's ends. <i>“<em>the resolution of pioneer women”</em></i></span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b><a href="https://www.merriam-webster.com/dictionary/tenacity" rel="noopener noreferrer" target="_blank">Tenacity</a> </b>gives birth to stubborn persistence and unwillingness to admit defeat. “<em>held to their beliefs with great tenacity”</em></span></div>
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<b><i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">You may not always have a comfortable life and you will not always be able to solve all of the world's problems at once but don't ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own. {Michelle Obama}</span></i></b></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">When you live with chronic illness, every aspect of life takes on a new dimension. Your daily decisions and choices are examined through a new lens, and you often find yourself carefully weighing the ramifications and possible outcomes of your choices. But, wait, wasn't this the way it always was? This is something all intelligent and responsible adults do? However, living with Myalgic Encephalomyelitis broadens the scope of that decision making process. The question isn't only how will this decision or choice affect you, but also, how will it affect your illness which in turn affects you and the choices and decisions you continually make.</span></div>
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<b><i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">“Catastrophes create heroes, people who know how to deal with trouble. They come in all shapes and sizes to take the lead: a medical worker, a lottery winner, a neighbor, bystanders, a priest, a child”</span></i></b></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">The notion of choice occurs at many levels. We have little or no choice about the thoughts which randomly occur to us. We do have choice about how we choose to act, that is, what we do about the thoughts. We also have choice about how we feel. Not choice about the feeling we have now - that is the result of past choices, but about the feeling we have next. We can be sad, and choose happiness, angry and choose love, etc. There is not any "right" way to "be," just possible ways - each with consequences. From a purely pragmatic perspective - evaluate the choices you have made, see what the effects have been. What is it that you want? What choices are you prepared to make to support those ideals ? Some things achieve what we want, others don't.</span></div>
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<b><i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">“Success is not final, failure is not fatal: it is the courage to continue that counts”. </span></i></b><b style="color: #20124d; font-family: Georgia, "Times New Roman", serif;"><i>{Winston Churchill}</i></b></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Living with a complex chronic illness such as M.E. is a search for quality of life. One needs to be well informed about their illness in order to manage their physical symptoms as best one can. However, one also needs to learn to live with a certain amount of ambiguity and uncertainty. Striving for a balance between work and play, rest and activity, relationships and solitude, and grief and joy, the challenge Myalgic Encephalomyelitis means we must come to accept our limitations and appreciate our gifts.</span></div>
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<b><i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">“I learned that courage was not the absence of fear, </span></i></b><b><i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">but the triumph over it. </span></i></b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b><i>The brave man is not</i></b><b><i> he who does not feel afraid, </i></b></span><b><i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">but he who conquers that fear.” </span></i></b><b><i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">{Nelson Mandela}</span></i></b></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Obviously, this is a demanding aspect of living with chronic illness. It's also the measure of your courage. Living with illness affords ample opportunity to be courageous in living your life to the best of your ability. Because when limitations and diminished control over the effects of illness are part of your daily life, your choices and decisions become the stuff from which courage emerges. The fact is, if you're living with Myalgic Encephalomyelitis you are courageous. In the process of meeting life's challenges, you have learned and are continuing to learn how to meet your fears and move beyond them. </span></div>
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<b><i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">“There Is Courage In Being Vulnerable. Courage is borne out of vulnerability, not strength.It is when we are at our weakest we find our strength through courage.</span></i></b><b style="color: #20124d; font-family: Georgia, "Times New Roman", serif;"><i>”</i></b><b><i><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"> </span></i></b></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Being real, being raw, being authentic, laying bare your flaws and discovering your voice can have massive power. Standing in who you are, owning your strengths and weaknesses and accepting who you are is amazingly powerful. Most people have been raised to believe that vulnerability equals weakness. But it doesn’t. There is incredible strength and courage in vulnerability. We must live in the space of vulnerability. Vulnerability is not just about fear and grief and disappointment it is indeed the birth place of everything we are hungry for : joy, creativity, faith, love and innovation.</span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b><i>“Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always </i></b><b><i>comfortable,but they’re never weakness.” </i></b><b><i><a href="http://www.goodreads.com/author/show/162578.Bren_Brown" rel="noopener noreferrer" target="_blank"><span style="text-decoration-line: none;">Brené Brown</span></a></i></b><b><i>,</i></b></span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">This is an inspiration for all of us around the world. We can not be invisible any longer without risking our lives. We need proper care and medical treatment, funding for biomedical research, education for those in the medical profession who need to learn more in order to treat us but more importantly we need acceptance and understanding in our communities because our disease is so complex one can only understand it by contracting it themselves. We need to show that this can happen to anyone.</span></div>
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Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com0tag:blogger.com,1999:blog-4941854812083391099.post-29120842828422955202017-04-30T16:01:00.001+01:002017-05-11T18:52:57.764+01:00#May12BlogBomb for 2017<div class="separator" style="clear: both; text-align: center;">
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>May is awareness month for ME, CFS, Fibro and Lyme.</b> Over the past few years, I have encouraged bloggers to share their awareness raising blogposts using the hashtag <b>#May12BlogBomb</b>. </span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">Hashtags like this work on both Facebook and Twitter, because they become hyperlinks to a list of all other posts publicly shared using the same hashtag. (Indeed searching the #May12BlogBomb tag now should bring up some of the posts shared in previous years.) </span><br />
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<b style="color: #20124d; font-family: Georgia, "Times New Roman", serif;">So, if you are writing a blog during the month of May</b><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">, please use the tag #May12BlogBomb where-ever you publicly mention your post on social media. Perhaps also consider sharing your post a few additional times on May 12th itself using the same tag. </span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">This way our "blogbomb" will get coverage throughout May but will also get concentrated coverage on one day: May 12th. </span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>2017 Link List for #May12BlogBomb:</b></span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">I will once again collate blogposts written for May Awareness into a link list on Just ME. If you would like your awareness blogpost included on the 2017 list, please submit your post details here as soon as the the post has been published: <br /><br />[<b>Edit 3rd May</b> - Apparently the form below only allows one response per person and doesn't work on mobile devices. Please try<b> </b><a href="https://www.surveymonkey.co.uk/r/2BHRRFM" style="font-weight: bold;" target="_blank">this link </a> as an alternative.]<b> </b></span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br /><i>Note: Please don't submit posts already linked in previous years' lists, nor posts promoting a business nor asking for money. The idea is that these posts are written and submitted by patients, carers, and/or families of those affected.</i></span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><i><br /></i></span><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">I will collate links through the early part of May, and publish the list as it stands on May 12th. Additional submissions received during the rest of May will get added later. (The above submission form runs only to the end of May).</span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>The choice of topic is of course your own,</b> and there are various angles that these awareness posts can take. Some people have used a series of photos, others have written poems, or contrasted their previously healthy lives with their current health status. There are also posts that have looked at the historical background to our medical treatment, and some that look to the future. The only suggestion I make is that you make your post friendly to those new to our situation. <br /><br /><b>If you would like to write a blogpost but don't have your own blog</b>, I am happy publish suitable guest posts on Just ME. Please email me at keelatoo@live.co.uk to discuss this option.<br /><br />Previous<b> #May12BlogBomb Link Lists </b>can be found on these pages:<br /><br /><span style="font-size: large;"><a href="http://sallyjustme.blogspot.co.uk/2016/05/blogbomb-link-list-2016.html" target="_blank">2016</a> - <a href="http://sallyjustme.blogspot.co.uk/2015/05/may12blogbomb-2015-link-list.html" target="_blank">2015</a> - <a href="http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html" target="_blank">2014 </a></span></span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">I am delighted that the idea of a "blog bomb" has proved so popular, and hope that the blogs written and shared using the #May12BlogBomb tag will spark greater interest in our situation, and create some public sympathy towards the various campaigns for change.<br /><br />Thank you to all the bloggers who have participated in this awareness raising event over the past years, and also to all those who will join for their first time this year. <br /><br /><b>#May12BlogBomb - the tag to amplify the voice of all May Awareness Bloggers!</b></span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;">*****</span><br />
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>Please also check out this post by ME Advocacy: </b></span></span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b><a href="http://www.meadvocacy.org/may_12_2017_international_awareness_day_25th_anniversary" target="_blank"><b>History of May 12 International Awareness Day</b></a></b></span></span></div>
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<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><br />Other hashtags worth viewing or using during May include: </span><br />
<span style="color: #20124d; font-family: "georgia" , "times new roman" , serif;"><b>#MillionsMissing #May12th #MayAwareness & #MEAwareness </b></span></div>
Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com6tag:blogger.com,1999:blog-4941854812083391099.post-25008636151863376312017-03-10T17:44:00.002+00:002017-03-12T17:56:24.621+00:00Rejuvenation Lotion from Fay Farm: Product Trial.<i><span style="font-family: "georgia" , "times new roman" , serif;">"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "</span></i><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">Aches and pains go with many forms of illness, and ME is no different. So when I was offered a sample bottle of this Rejuvenation Lotion from <a href="http://thefayfarm.com/" rel="nofollow" target="_blank">The Fay Farm</a>, I decided it was worth the small obligation of an honest review on my blog.<br /><br />The Fay Farm advertises <i>"hand made organic body care"</i> products, and the <a href="http://thefayfarm.com/products/rejuvenation-hoe-lotion" rel="nofollow" target="_blank">Rejuvenation Lotion</a> is one in a series of products that all aim to improve well-being. <br /><br />Rejuvenation Lotion is made with organic ingredients including hemp oil, magnesium, tumeric, licorice and valerian. <br /><br />I have been using Rejuvenation Lotion now for just over a month, and find the lotion to be both soothing and calming on muscles. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">I use it mostly in the evening for muscle burn (which I suspect is linked to lactic acid accumulation) and also for the infamous "jumpy leg syndrome", which can be so unsettling when tired and just wanting to rest.</span><br />
<a name='more'></a><span style="font-family: "georgia" , "times new roman" , serif;"><br /><br />The lotion itself smells slightly of grass, which is pleasant enough, but the real benefit is the effect as the lotion soaks into the skin. A little bit of gentle massage over the affected areas, and I found that tense muscles start to relax, and aches subside. I have also used the lotion, with gentle massage, on a pulled shoulder muscle to good effect. <br /><br />Another interesting effect is that, the rather unique smell of the lotion, now has positive associations in my mind - almost as if my muscles start to anticipate the approaching relief. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">The Fay Farm worked with sufferers of fibromyalgia, multiple sclerosis, and small fibre neuropathy to develop this carefully formulated product. It is therefore at the top end of their product range in terms of price. Their other products include organic soaps, shampoos and balms that can be viewed on their website <a href="http://thefayfarm.com/products" rel="nofollow" target="_blank">here</a>.<br /><br />At the moment I still have about half of the 8oz bottle I received left, which means that a little goes a long way. Thank you to The Fay Farm for sending me this sample bottle of Rejuvenation Lotion - I hope others will consider trying it too. </span>Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com0tag:blogger.com,1999:blog-4941854812083391099.post-51190795895555903902017-02-17T14:58:00.000+00:002017-10-20T18:23:15.859+01:00GET out!<b><b><b><b><span style="font-family: "georgia" , "times new roman" , serif;">GET = Graded Exercise Therapy. </span></b></b></b></b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipWri-lIH4aci27I9eK6DpMQh0H6rwqXs-poS357iCkgHys5kKzoQ3BYSImhtwjr8cpb7mb62MmOM5e1WWZcNa_35ZVH8JbvyDohFKR4qACqomGJIQk-pyIAhFDqEnJNEc1zj4uDMUpird/s1600/GET+out%2521.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" height="174" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipWri-lIH4aci27I9eK6DpMQh0H6rwqXs-poS357iCkgHys5kKzoQ3BYSImhtwjr8cpb7mb62MmOM5e1WWZcNa_35ZVH8JbvyDohFKR4qACqomGJIQk-pyIAhFDqEnJNEc1zj4uDMUpird/s200/GET+out%2521.png" width="200" /></span></a><span style="font-family: "georgia" , "times new roman" , serif;"><b>This is a "therapy" that the NHS still suggests will help people with ME.</b><br /><br />The premise is almost plausible and runs something like this (my words): <br /><br /><i>Exercise is good for everybody, so no matter how ill you are it is always good to encourage you to move about more. </i><br /><br />The thinking also suggests that: </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><i>People who have been ill for a very long time start to reap secondary benefits from being ill and therefore need to be persuaded to leave behind their sickness role.</i></span><br />
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<b><span style="font-family: "georgia" , "times new roman" , serif;">Is that so?</span></b><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">When I was at my lowest, I adjusted everything I did downwards in order to make my life as easy as possible. Indeed having learned about the effects of exertion on ME symptoms first hand, I was continually cautious about doing stuff that might cause me to further relapse.<br /><br />Yet, even knowing the risks of exertion, I was still vulnerable to the <i>"Use it or loose it"</i> message, that is so popular these days. Occasionally, I even considered that, I might be over-doing this resting thing. I thought perhaps all I really needed to do, was summon a bit more motivation and get going . . .</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br />I promise you THAT never ended well!<br /><br /><b>The truth is I always wanted to do more. </b> The fact that I withdrew from loved ones, and refused almost all social activities, was one of the toughest things I've ever had to do. Yet, it had to be done if I wanted to prevent further decline. <br /><br />So the limits of my physical body were ever present and ever frustrating, and gradually over time my mind started to build its plans within those limits. It's a form of adjustment and acceptance. Sadly, every further slip downwards included a whole new cycle of frustration and adjustment. Being ill is like that.<br /><br /><b>Yet, psychiatrists think of these genuine lifestyle adjustments, as the patient adopting a </b><i><b>sickness role. </b></i></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><b><i><br /></i></b>Well yeah! When you're are sick it is actually important to adjust your lifestyle to cope. And certainly a newly sick person's role in society has to change. Those with long term ill-health are not well enough to fulfil the role they assumed when well. For me, the adjustment to adopting a more dependent role, was not one I took lightly. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">However I didn't ever "choose" this sickness role. Certainly it became part of my life, but only because it was forced upon me.<br /><br /><b>So back to Graded Exercise Therapy:</b> </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">The bio-psycho-social premise under which GET is applied suggests that people with ME are actually no longer physically ill. The premise concedes that the illness may have started with a viral trigger, but after that, it suggests that sufferers simply maintain their role as an ill person! </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">With this logic it is easy to suggest that people with ME have just allowed themselves to become de-conditioned. They don't use the word "lazy", but in reality that is how people with ME are painted. Exercise is then the obvious "cure".<br /><br /><b>I have a big problem with this concept, because it suggests that ill people would maintain their restricted life patterns even after they bec<span style="font-family: "georgia" , "times new roman" , serif;">a</span>me well again.</b> </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Do they? Or more personally, did I?</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br />I can answer this with more certainty now, because in late 2015 I started on a drug* that changed my illness, and I became able to do considerably more than before. Of course, I was "de-conditioned" - physical inactivity does that to muscles - so it took some time for me work up to my new physical threshold.<br /><br />Did I need a GET therapist to persuade me to take up that additional capacity? </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">No. I did not!</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"> As the severity of my symptoms lessened I spontaneously took up the extra ability that my improved health offered. Over time, I carefully let go of many of the layers of protection I had built around my earlier fragile health and I re-adjusted to my new reality. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">This just happened. I didn't need any therapist to persuade me that I needed to do more, nor to push me to increase my activity! Joyfully, and with great delight to those around me, I was able to pick up parts of my life that I'd been forced to abandon. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><b>How could I ever have questioned my own judgement on my physical limits? </b> </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Sadly it seems that society puts incredible pressure on each of us to be "well", and I now recognise that I was not entirely immune to applying that societal judgement to myself. Society seems to assume that illness is black or white. The greyness of long-term chronic incapacity is not well accepted. Public sympathy runs out, and there is a pressure to get well again. <br /><b><br />Graded Exercise Therapy is part of that societal pressure. </b> Combined with Cognitive Behaviour Therapy, these two NHS "treatments", effectively tell ME sufferers that they are not really ill, and that it is time they chose to get better! </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">So this is what I can't understand. Why do researchers of the bio-psycho-social school ignore patients who tell them that Graded Exercise Therapy is causing harm? Why do psychiatrists continue to push versions of this therapy in their research and in their many highly publicised media-spun stories? <br /><b><br />And most pertinent of all, WHY do these researchers ever get funded to test their therapies in children? </b><br />ME children and adults are constantly being told that these therapies "work", and when they don't, no questions are asked of the therapy itself. It is only the person who failed to make themselves well again that gets scape-goated! <br /><br /><b>It is time GET was stopped. </b></span></div>
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<b style="font-family: Georgia, "Times New Roman", serif;">* </b><span style="font-family: "georgia" , "times new roman" , serif;"><b>As I mentioned above I have tried a drug</b>, I'm not yet sharing more detail. I can say, I am happy to be doing substantially better than I was, however this is not "recovery". I have a new limit, that is still very real. I can't exercise through that new limit, any more I could the old one. Nonetheless, I am very grateful that the tight grip that ME had on me, has been partially released. I am still ill. I still need to protect my health by imposing limits on my lifestyle, and those limits are still frustrating, despite my delight at now having a greater energy budget. Let's hope that soon there will be many more treatment options for everyone, and that GET rapidly becomes a thing of the dark and distant past. </span><br />
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Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com14tag:blogger.com,1999:blog-4941854812083391099.post-25426012496541931192016-12-31T11:56:00.000+00:002017-04-23T17:30:26.052+01:00Hydro-ease - My First Float<div class="separator" style="clear: both; text-align: left;">
<b>Earlier this year I booked "a float" with the lovely Vivian of Hydro-ease. </b></div>
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The idea is that you take an hour (or more) to float in a warm bath of Epsom salts. The water is kept at an even body temperature, and because of the high salt content you really do float. The feeling is incredibly relaxing, and wonderfully indulgent. </div>
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Before I took the plunge, Vivian enthusiastically explained the whole system to me, and outlined some of the benefits of the weightless sensation, and the deep relaxation that results. She explained that the experience is almost womb-like, and to get as close to that experience as possible, it is quite acceptable to wear nothing! I laughed, and showed her the new swimsuit I'd bought online! <br />
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There are two float units at Hydro-ease. The one I used was lit with a gentle pink light. The private changing area has a light controlled by a movement sensor, so it goes out once you start floating. Inside the float tank you have the option of either relaxing in the soft low light inside, or you can opt to float in complete darkness.<br />
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After stepping into the tank, you close the doors to keep the heat in. Inside there is a light switch, an emergency button which will call Vivian, and also a fresh water sprayer in case you get the salt water in your eyes. </div>
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<b>I lay back in complete darkness. </b><br />
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<b>The first few seconds felt a bit weird.</b> There I was finally floating - in the dark - with just myself for company, and the full knowledge that I'd be here - alone like this - for another hour.<br />
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So I stretched my arms out to feel for the sides of the tank. I found if I lay star-fish-like in the middle of the tank that I was small enough to not touch the edges, but also that I could float a little to one side and use my finger tips to bounce my floating body gently back and forth. I did this for a while enjoying the gentle watery sounds and sensations. <br />
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Soon my mind started to wander. I found that although my thoughts touched on many ideas, I was becoming too relaxed to dwell on any one thought for long. I'd touch on a thought, or a concern, in my head, but then feel content enough to just leave it there.<br />
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I experimented with a few more floating positions - pencil shaped with my arms by my sides - curled up in a foetal position - tall with my arms above my head . . . but in the end I just relaxed into a neutrally comfortable sun-bathing type of position and let my mind empty.<br />
<br />
Time drifts, and when I paused once to wonder how long I'd been floating for, I realised I had absolutely no idea, and also that it didn't matter. <br />
<br />
Eventually a gentle sound alerted me to the fact my time was up. I suspect by then I'd actually fallen asleep, or if not asleep was certainly in a deeply relaxed state. <br />
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I took a few deep breaths and allowed myself to wake slowly. Vivian had told me that there was a generous time for coming round, and I was glad of that. </div>
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Vivian also recognises that after such an experience, that we don't just want to dash straight back out into the real world - so after showering and dressing I spent some time relaxing with a cup of herbal tea in her snug resting room. Ahhhhhh......<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2YgirblLa1guOPqIUtZFLgK7fWW7Ud9VZUX-ypOUSpfafsTdYTngxLRv8uMSHKxIPpgs-NYLC8kNCGcxTLRfmRbS_5QGb33EwlVL2Mw01XItqE1aDSaPmeUH7vobQVIu1PSU6Tr-QccW7/s1600/IMG_3542.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2YgirblLa1guOPqIUtZFLgK7fWW7Ud9VZUX-ypOUSpfafsTdYTngxLRv8uMSHKxIPpgs-NYLC8kNCGcxTLRfmRbS_5QGb33EwlVL2Mw01XItqE1aDSaPmeUH7vobQVIu1PSU6Tr-QccW7/s320/IMG_3542.JPG" width="320" /></a></div>
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Afterwards I chatted to Vivian about her work and realised that Hydro-ease is very new venture, being just a year old. Hydro-ease is also the first, and to date only, floatation centre in Northern Ireland and on top of the floating, Vivian also offers counselling and other therapies. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWWij5ZrOxr9gH6yKZfgoGP2Q5_mWLC0ZE3636WAz0SwhpjWiskYeFCHtxU5cqKovy9KxDmthlnFG9GxXOrLwxFOtD9kwLpTU-4K60uBDllqggn0AfpwZ1UFQeiGcZgB5anJ4SBm83gxJE/s1600/IMG_3545.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWWij5ZrOxr9gH6yKZfgoGP2Q5_mWLC0ZE3636WAz0SwhpjWiskYeFCHtxU5cqKovy9KxDmthlnFG9GxXOrLwxFOtD9kwLpTU-4K60uBDllqggn0AfpwZ1UFQeiGcZgB5anJ4SBm83gxJE/s320/IMG_3545.JPG" width="320" /></a></div>
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<b>So was my session worth the cost? </b></div>
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I have to say YES! A resounding YES in fact, because I left with a totally refreshed and re-rejuvenated feeling. Sadly however it did not change my symptoms of ME, and as a therapy it would only suit those well enough to travel, shower and change at the venue. (I would not have been well enough to try this last year.) Yet as part of a holistic approach to wellness and self-care, I would still highly recommend it. </div>
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I really must get myself over there for another session soon. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGsqAYP8_BwefFCFksKaCk16ndrJJK7zgjlR_s1Fm2BB32q1paO3Mz3OfZLAACH6gxd-unxCEVe69j21RZHQ2Cdiq-AOuOgyePI7aWNdy5iUOGewiYCexsrVfeu86GfNGLl_YIPYm4F49v/s1600/IMG_3550.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGsqAYP8_BwefFCFksKaCk16ndrJJK7zgjlR_s1Fm2BB32q1paO3Mz3OfZLAACH6gxd-unxCEVe69j21RZHQ2Cdiq-AOuOgyePI7aWNdy5iUOGewiYCexsrVfeu86GfNGLl_YIPYm4F49v/s320/IMG_3550.JPG" width="320" /></a></div>
<br />
And for those who were wondering about whether I went for the full womb-like foetal experience? Well, let's just say I didn't take the tags off my new swimsuit! xx<br />
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*****<br />
<br />
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<b>Edit April 2017: </b>I have now been back for several more floats and have even booked a series of further floats over the coming months. I now float for 90 minutes each session instead of only 60, and this added time seems to give me a more long-lasting benefit. I also find that in the days coming up to each float, I am increasingly looking forward to the experience. So, well worth trying, if you are considering it at all.</div>
</div>
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<b>You can find out more about Hydro-ease here:</b><br />
FaceBook page: <a href="https://www.facebook.com/hydroease/">https://www.facebook.com/hydroease/</a><br />
Website: <a href="http://www.hydro-ease.co.uk/">http://www.hydro-ease.co.uk/</a><br />
<br />
<i>Note: I am in no way linked to Hydro-ease and have received no payment or benefit of any kind for writing this post. </i>Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com4tag:blogger.com,1999:blog-4941854812083391099.post-38365308388244943142016-12-08T11:37:00.000+00:002016-12-08T11:37:53.696+00:00Guest Post by Simone: Far too many stories like this!<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyMxElxAcGgg-xZB0DaLuxyyV5Hkd7xA2PMCgomCNIxJCp0ReFPfq3a0StQKchPKQ8CjF7R6ugV-frusT85sFO6IabIEHzmnsAvxPTD5KdPiQtR_9Yg8hEn50Bv3THH4zWYlypPKvwczve/s1600/sugar-cube-258116_640.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyMxElxAcGgg-xZB0DaLuxyyV5Hkd7xA2PMCgomCNIxJCp0ReFPfq3a0StQKchPKQ8CjF7R6ugV-frusT85sFO6IabIEHzmnsAvxPTD5KdPiQtR_9Yg8hEn50Bv3THH4zWYlypPKvwczve/s200/sugar-cube-258116_640.jpg" width="200" /></a><span style="font-family: Georgia,"Times New Roman",serif;"><i>Thanks to Simone for this guest post, which was inspired by the recent blog post by Rosa Rainbows: <br /><a href="https://rosarainbows.wordpress.com/2016/09/17/how-me-and-my-m-e-became-worse/" target="_blank">"How me and my M.E became worse"</a><br /><br /><b>Simone writes: </b></i><br /><br />There are far too many stories like this. People with ME/CFS are being told by many health professionals that their symptoms are just in their head and that, to get well, they need to exercise. The problem is that research is increasingly finding that on a physiological level, people with ME/CFS can be damaged by exercise. Our cells don't make ATP (energy) properly so, when it's used up by exercise, our system collapses. Many people have been made worse by either pushing their bodies to keep going with their lives or by exercising (or both).<br /><br />I did graded exercise therapy two years ago (at the suggestion of my GP). I was walking for 2 minutes twice a week (I would go to the street corner and back). It would take me 45 minutes to recover from that walk, and then I'd be wiped for the rest of the day. Logic suggests that, over time, my body would gain fitness and I would be able to increase my walking duration and feel better from the walks. Instead, the opposite happened. At the end of 3 months, I still couldn't walk more than 3 minutes, and it was taking me longer and longer to recover. I wasn't feeling better, I was feeling worse. During that time, I saw a specialist who told me to increase my walking to 15 minutes a day, three times a week. I just stared at her, when she suggested it, wondering how I would do that. She must have seen the puzzlement on my face, so she (un)helpfully suggested I break it down into 5 minute chunks, and do them across the day.<br /><br />Then I started reading the research into exercise with ME/CFS. Things like abnormal ATP production, lactate levels, gene expression, changes in blood metabolites following exercise. Abnormal VO2 Max test results are such a reliable indicator of ME/CFS that a 2-day cardiopulmonary exercise test (CPET) was proposed as a diagnostic test for ME/CFS, except that the test is dangerous for us in that it can take months for people to recover from (the risks are so high that they won't do the test on someone like me). Because of the risk of harm, the test isn't recommended as a diagnostic tool.<br /><br />After reading the research, instead of following the advice of the doctor to increase my walks, I stopped walking... and I started to improve a little. I wasn't cured, but I wasn't getting worse anymore. (Unfortunately, months later, I got an infection and then went backwards for 6 months, but that's another story!).<br /><br />At a recent international ME/CFS conference which world leading researchers attended, provocation studies (in which exercise is used in a carefully controlled way to exacerbate symptoms, and measure physiological correlates) were a key feature. These studies are like giving sugar to a bunch of diabetics, in order to understand the process of diabetes and find ways to test for and measure it. This is how exercise (& exertion generally) is being viewed by ME/CFS researchers now, like sugar to diabetics.<br /><br />It is becoming increasingly acknowledged, within the research community, that ME/CFS is a hypometabolic state. Our bodies have shut down metabolism (energy production). Many think that this shut down has a protective function (to protect us from heart failure - one well known doctor has noted for 20 years that we look, in many ways, like people with functional heart failure, but that something prevents us from crossing that event horizon - from some sort immune process or something else (still many unknowns)).<br /><br />Despite this, the prevailing view within the medical profession (most of whom do not keep up with the research) is still that this condition is simply caused by activity avoidance, and that people need to be encouraged to exercise to recover. So, despite the researchers viewing exercise for people with ME/CFS as sugar is to diabetics, doctors all over the world are recommending it to their patients. When their patients say that they feel worse, the doctors tell them that it's in their head, that it's a normal part of regaining fitness, and to keep going. But it isn't. It's dangerous.<br /><br />Please, if you know someone with this illness, never encourage them to exercise, or to push through. If they have been misdiagnosed with ME/CFS (which frequently happens) and instead have some form of idiopathic fatigue, they may respond to exercise. But if they have ME/CFS, there is a very strong chance that they won't respond well, and that they will instead be damaged by it.<br /></span>Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com4tag:blogger.com,1999:blog-4941854812083391099.post-71253264609832602452016-09-13T08:07:00.001+01:002017-01-04T18:14:03.818+00:00Petitions: Changing the world one signature at a time.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5hI4fzRRqFr7gkq7AA-Jn6e89GJHyi4zpIs_8QUKHoFfsnDHhYvDXaFR_l_HGFb40e7TmrYEZxQrMvtttY-UKYsaYbh7nJm4iR5y3zx7KpoPtcW3LbAm9TFDl-NSoRAmcI60gApk9Vpsm/s1600/P1240353.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5hI4fzRRqFr7gkq7AA-Jn6e89GJHyi4zpIs_8QUKHoFfsnDHhYvDXaFR_l_HGFb40e7TmrYEZxQrMvtttY-UKYsaYbh7nJm4iR5y3zx7KpoPtcW3LbAm9TFDl-NSoRAmcI60gApk9Vpsm/s320/P1240353.JPG" width="320" /></a></div>
<b>So what makes a petition massive? And how can petitions for causes like ME be promoted, so that they too gather massive attention?</b><br />
<br />
One petition that received rapid popular support was the one asking for Jeremy Clarkson to be re-instated as the producer of Top Gear. It didn't actually succeed, but apparently in just ten days it collected over a million signatures. I guess being a huge celebrity, and a controversial one at that, can really help.<br />
<br />
Other viral petitions have children or pets, tugging at our heart strings. They often challenge some nonsensical bureaucratic decision that offends our sense of justice. So we sign, because we all want the world to be made right.<br />
<br />
Yet a petition, that highlights only one individual case, doesn't necessarily challenge the root cause of the issue. The specific case may get resolved but the problem issue might remain.<br />
<br />
It's a tricky call for petition writers. Focusing on one individual case, might elicit greater public sympathy, but focusing on the root problem - the one that changes the system for the better - doesn't always grab as much attention.<br />
<br />
<b>So what does all this mean for petitions about ME?</b> <br />
<br />
If we want petitions to move beyond ME circles then maybe the lessons from the examples above could be used to help us. Here's what I suggest:<br />
<br />
<ul>
<li>If you share a petition online, add your own short comment because people respond better to individual stories.</li>
<li>If you happen to know any celebrities (or even just some-one with a huge media following) then encourage them to share your post too.</li>
<li>When you share a petition consider making your comment public, so that even people you don't know can hear your story.</li>
<li>Share that important petition more than once, because most of us don't sign the first time we see a petition.</li>
<li>Think about places beyond ME circles, where people might sign if you asked them.</li>
</ul>
<div>
<b>Escalate the Impact!</b></div>
<br />
It might seem that each petition we sign makes little impact on its own, but I think globally our message is starting to get louder. ME advocates world over are adding their voices to the ME cause.<br />
<br />
Soon I suspect we will create the perfect storm. A storm that will change the whole paradigm of how ME is regarded.<br />
<br />
The #MEAction petition of last year calling for the Lancet to review and retract the PACE Trial collected over 12,000 signatures. It has been referenced in many subsequent letters and articles. The petition was even mentioned in the recent tribunal report that ordered Queen Mary University of London to release the PACE Trial data.<br />
<br />
<b>So could we be on the cusp of huge change?</b> <br />
<br />
Every action we take now builds on the achievements of earlier advocates, and adds greater strength to the actions of future advocates. ME patients can't march the streets, but we <i>can</i> sign petitions. We <i>can</i> share campaigns. We <i>can</i> each make a noise, each in our own way.<br />
<br />
The<b> #MillionsMissing </b>demonstrations on 27th September have the potential to have a huge impact. Rows of empty shoes representing lives lost to ME will create a very dramatic image. <br />
<br />
Right now there is massive potential for creating momentum to change how people with ME are treated, and every one of us who simply signs a petition is helping.<br />
<br />
<b>Your voice matters. <br />Your signature on a petition matters.</b><br />
<b>We matter. </b><br />
<b><br /></b>
<b>Let's let the world know it!</b><br />
<br />
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*********</div>
<br />
<b>Petitions worth signing:</b><br />
<b><br /></b>
<b>The Opposing MEGA Petition:</b><br />
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs<b><br /><br />Two #StopGET petitions: </b>Both petitions are linked on this #MEAction page. At the moment Graded Exercise Therapy is being used on children in the MAGENTA trial. This must stop:<br />
<br />
<a href="http://www.meaction.net/suspend-all-trials-of-graded-exercise-therapy-in-children-and-adults-with-mecfs/" target="_blank">PETITIONS: SUSPEND ALL TRIALS OF GRADED EXERCISE THERAPY IN CHILDREN AND ADULTS WITH ME/CFS</a><br />
<br />
<b>Ongoing Dutch Petition</b>:<br />
<a href="https://petities.nl/petitions/me-is-geen-solk-wijzig-gezondheidsraadscommissie-en-houd-u-aan-de-adviesopdracht?locale=en&utm_content=social-genf7&utm_medium=social&utm_source=SocialMedia&utm_campaign=SocialPilot" target="_blank">ME is not MUPS: Change Dutch Health Council Committee and adhere to the advisory report assignment</a> (MUPS = Medically Unexplained Physical Symptoms)<br />
<br />
<b>Please also consider endorsing Alem Mathees for a WEGO Health Award</b> for his substantial work on questioning the PACE trial, and for successfully challenging the PACE authors to release their data. You can give him a vote for an award at this link:<br />
<a href="https://awards.wegohealth.com/nominees/12435">https://awards.wegohealth.com/nominees/12435</a> <br />
<br />Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com1tag:blogger.com,1999:blog-4941854812083391099.post-16674824764800287622016-09-09T18:37:00.002+01:002016-09-09T23:08:21.336+01:00PACE data: QMUL disclosure under FOI<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwh1avQkdrlZ1ZcnhXSKBBHZU3fZt3TLdEZ6tYOcuB3d0atwFoKF3YVAwU2aQQIb13wM57lEtBTcquf2AXGkDq66aee5uS66jsaic1srgw-d-olZwVYnCfdCVi00Rk3O8qO_FLbnjfjDcu/s1600/PACE.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwh1avQkdrlZ1ZcnhXSKBBHZU3fZt3TLdEZ6tYOcuB3d0atwFoKF3YVAwU2aQQIb13wM57lEtBTcquf2AXGkDq66aee5uS66jsaic1srgw-d-olZwVYnCfdCVi00Rk3O8qO_FLbnjfjDcu/s320/PACE.png" width="320" /></a></div>
So Queen Mary University of London is to release the disputed data from the PACE trial to Alem Matthees an ME patient who requested the data under the Freedom of Information Act.<br />
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<a href="http://www.qmul.ac.uk/media/news/items/smd/181216.html">http://www.qmul.ac.uk/media/news/items/smd/181216.html</a><br />
<br />
And whilst the international ME community will no doubt be celebrating (I admit I have a some what inane grin on my face just now) it is sobering to think of how far reaching the recommendations for Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) have permeated the knowledge base of our health services. <br />
<br />
If (when) the reanalysis of this data shows that these therapies are without merit, there will still be a huge amount of work required to remove GET in particular from the "go to" solutions of doctors, physios and other health care professionals.<br />
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However for now, I celebrate. <br />
<br />
The real work will no doubt follow.<br />
<br />
(Sorry for such a short post, but I couldn't let something like this go by without making a quick comment. :) )<br />
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<b>PS Nearly forgot to say Thank You Thank You Thank You Alem! xx</b>Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com4tag:blogger.com,1999:blog-4941854812083391099.post-89754733137321950702016-08-08T20:18:00.000+01:002016-09-19T09:05:12.515+01:00Who is responsible?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8xhfCXky-8TZc0GFVzxVge8WWv1Qpd0eIXbQgW7yHux-ZMTf9laHDGAYp6kQZ-R0fZCDJ0GkI9XbF-VNUmOIfoOsEKaaqk4us450TqP9clySerdEfVGuJl9k6SrDNKMzJfPRdLApPjVhyphenhyphen/s1600/jj.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8xhfCXky-8TZc0GFVzxVge8WWv1Qpd0eIXbQgW7yHux-ZMTf9laHDGAYp6kQZ-R0fZCDJ0GkI9XbF-VNUmOIfoOsEKaaqk4us450TqP9clySerdEfVGuJl9k6SrDNKMzJfPRdLApPjVhyphenhyphen/s1600/jj.png" /></a></div>
<b>Who takes responsibility when National Health Service guidelines cause medical harm? <br /><br />It's a serious question. Where does the buck stop? </b><br />
<br />
I am asking because, the National Institute of Clinical Excellence (NICE) guidelines for myalgic encephalomyelitis, ME, still recommend two controversial therapies: Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT).<br />
<br />
Actually NICE prefixes the name, ME, with "CFS" (chronic fatigue syndrome) - a shocking misnomer, that suggests patients are simply fatigued or tired. This would appear to be an intentional attempt to belittle the disease. It certainly doesn't indicate the potential for ME to become so severe that some patients exist in a living limbo of agonising immobility for years and even decades. <br />
<br />
<b>Yet General Practice doctors consult NICE guidelines, see the word "exercise" and regularly tell their ME patients to get out and starting exercising.</b><br />
<br />
I too was given this advice at the start of my illness. <i>"Three short brisk walks a day"</i>, I was told. It didn't work for me, and I doubt it would work for anyone with this debilitating disease. Why would it? One of the main problems with the disease is that exertion of any kind exacerbates all symptoms. Indeed, in my own case, trying to follow the advice I was given led only to increasing disability.<br />
<br />
Patient groups and charities, are very aware of the problems with NICE guidelines and have often pointed out that both CBT and GET tend to do more harm than good. The ME Association survey clearly shows that 74% of those doing GET say their symptoms are made worse.<br />
<br />
Further, the now notorious PACE Trial which provides the so-called evidence base for GET and CBT, in fact only shows minor improvements for a small percentage of individuals. Add to this, the fact that the methods used in the PACE trial, have been scientifically questioned, and that the authors are going to great lengths to resist releasing their data, and suddenly the evidence seems dubious.<br />
<br />
Yet still patients are being subjected to this "exercise" paradigm.<br />
<br />
<b>So why is nothing changing? Why does NICE cling to these harmful and questionable therapies?</b><br />
<br />
<b>What has happened to the medical maxim "first do no harm"?</b><br />
<br />
<b>And who is ultimately responsible for the harm being caused? </b><br />
<br />
I don't blame the doctors. They refer to the guidelines and believe them to be the best medical information available. They advise as they are advised. <br />
<br />
Doctors also read media headlines, and sadly most ME news stories claim that people with ME just need to exercise and think positively in order to recover. It certainly seems like good common sense advice for the life-weary. Yet because ME has no clinically accepted biomarkers, it is easy for doctors to genuinely think the ME patients they see are just run-down. Or, conversely, to think that those who are just run-down might qualify as having the condition Chronic Fatigue Syndrome, which curiously the media always follow with the phrase "also known as ME". <br />
<br />
One way and another, it is easy to see how confusion arises. <br />
<br />
<b>Yet for those who have the severely disabling, long-term, life-altering, debilitating disease of Myalgic Encephalomyelitis there can be no confusion:</b> these patients know they have something very physically wrong with them. Any small extra thing a person with ME tries to attempt, results in flu-like payback, and potentially a ratcheting downwards of their long term health. The disease is relentlessly cruel, stealing away the very essence of each sufferer's existence. <br />
<br />
And for the most severely ill it seems there is little the NHS can offer. Charities regularly get calls from concerned patients and their families, because home visits are denied, and trips to health centres or hospitals are too detrimental to the patient's well-being.<br />
<br />
So it seems, severe ME patients are largely ignored by health services, and the NICE guidelines have few suggestions for patients reaching this state. If patients are lucky, they are given the equivalent of palliative care to ease their symptoms, but not much else. <br />
<br />
Yet there are many anecdotal stories of Graded Exercise Therapy being the initial trigger that sent mild or moderately ill patients hurtling into the abyss of severe ME. I cannot understand why these worrying stories, and the reports from the charities are being so blatantly ignored. <br />
<br />
<b>I ask again: Who is responsible? <br /><br />****<br /><br />Useful References:<br /><br />NICE guidelines for CFS/ME: </b><a href="http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations" style="text-align: center;" target="_blank">http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations</a><b><br /><br />PACE Trial</b>: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext">http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext</a> <b><br /></b><br />
<b>Reporting of Harms </b>Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Tom Kindlon <a href="http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf">http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf</a><br />
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<b>ME Association: </b>Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS | 29 May 2015 <a href="http://www.meassociation.org.uk/2015/05/23959/">http://www.meassociation.org.uk/2015/05/23959/</a><br />
<br />
<b>David Tuller's articles on Virology Blog about the PACE Trial problems</b> : Trial by Error: <a href="http://www.virology.ws/2015/10/21/trial-by-error-i/">http://www.virology.ws/2015/10/21/trial-by-error-i/</a> and further articles on Virology Blog here: <a href="http://www.virology.ws/mecfs/">http://www.virology.ws/mecfs/</a><br />
<br />
<b>Valerie Eliot Smith has recorded events regarding refusal of PACE Trial researchers to share data:</b> <a href="https://valerieeliotsmith.com/tag/pace-trial/">https://valerieeliotsmith.com/tag/pace-trial/</a><br />
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<b>From Dr Mark Vink: </b>The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A review <a href="http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php">http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php</a><br />
<b><br />Other posts on Just ME:</b><br />
<a href="http://sallyjustme.blogspot.co.uk/2015/03/10-things-me-patients-need-now.html" target="_blank">10 Things ME Patients Need NOW!</a> March 2015<br />
<a href="http://sallyjustme.blogspot.co.uk/2014/05/WhyNOTexercise.html" target="_blank">ME Awareness - Why NOT Exercise?</a> May 2014<br />
<a href="http://sallyjustme.blogspot.co.uk/2015/09/graded-exercise-therapy-no-thank-you.html" target="_blank">Graded Exercise Therapy? No Thank You!</a> Sept 2015<br />
<a href="http://sallyjustme.blogspot.co.uk/2015/09/the-use-of-patient-blogs-as-care.html" target="_blank">The Use of Patient Blogs as a Care Resource</a><br />
(My video presentation at Queens University Belfast) Sept 2015<br />
<a href="http://sallyjustme.blogspot.co.uk/2015/01/dr-vanness-on-recent-press-reports.html" target="_blank">Prof. VanNess on recent press reports</a> Jan 2015<br />
<b><br /></b>Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com20tag:blogger.com,1999:blog-4941854812083391099.post-26753734094628138652016-07-21T12:06:00.000+01:002016-10-20T12:15:51.586+01:00Chronic Illness & "determination to recover"<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlY5wUx9unJo6ySmn3x-6ddBEEpi2btMNsv6MQacSciajaqDqLkW_D0QhAgLY26HGQeXkx8Z_K2IilzLBCYv4djxmSajAPY5bGurgDc_pjhcDZeic2FVwCow-DODU2AY00s1dpJ1KvF1EC/s1600/DETERMINED+TO+RECOVER.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="181" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlY5wUx9unJo6ySmn3x-6ddBEEpi2btMNsv6MQacSciajaqDqLkW_D0QhAgLY26HGQeXkx8Z_K2IilzLBCYv4djxmSajAPY5bGurgDc_pjhcDZeic2FVwCow-DODU2AY00s1dpJ1KvF1EC/s200/DETERMINED+TO+RECOVER.png" width="200" /></a></div>
<b>The press love recovery stories where the long time ill - through sheer determination and will power - make themselves well again. </b><br />
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These stories run with patient comments such as, <i>"I was determined not to let this beat me."</i> or <i>"It was a very difficult journey, but I triumphed in the end."</i> The statements themselves are likely true, but the press will often imply that the tenacity of the patient was <u>the</u> major key to recovery.<br />
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<b>So what about all the people that remain chronically, and often severely, ill? Are they simply not determined enough to elicit their own recoveries?</b><br />
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Of course I understand the need for journalists to make the subject of their stories heroic, and therefore remarkable, but there must be other ways of doing this than implying that strength of character and determination alone are sufficient to overcome serious illness?<br />
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Actually this line of thinking is not just insulting to the patients who remain ill, but also to the many doctors and researchers involved in bringing effective treatments to patients. Often the fact that a new drug, or change in treatment, coincided with the turning point in the patient's attitude is down played, and the reader is left supposing that any illness can be over come with good mental fortitude.<br />
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<b>The message is subtle and repetitive. It is also incredibly damaging.</b><br />
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Those who live with intractable chronic illnesses are often regaled with these popular recovery messages by friends and family. Well meaning folk get convinced that recovery would be just around the corner if only the sufferer would just <i>"think more positively"</i> and <i>"believe that recovery was possible"</i>! <br />
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Worse however, is the way this concept affects attitudes wherever a chronically ill person goes! <br />
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The cynical <i>"if only you'd try harder" </i>attitude now seems to be the official line for benefits assessments. The ongoing problems with Employment Support Allowance (ESA) and Personal Independence Payments (PIP) assessments being particularly problematical. <br />
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And here the media has influence again. <br />
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This time by vilifying patients by <i>"catching them out"</i> doing something they should not be capable of doing according to the benefits they receive. In these articles journalists can be especially cruel, often using a photo captured in a single moment as their evidence, ignoring the fact that one single moment may not represent the real truth.<br />
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<b>Gradually public opinion of the long-term ill and disabled changes. The chronically ill are now labelled as either heros, or layabouts. </b><br />
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Media heroes have their praises sung high. In these stories the heroic individuals either: use their strength of will to recover from their condition; or they have a visible disability, manage to achieve something outstanding, and are described as an <i>"inspiration to all".</i><br />
<i><br /></i>
Unfortunately, those who remain long term ill without much hope of recovery, and especially those who don't have immediately obvious disabilities, don't get hero treatment in the media. Sadly it is then assumed they must fall into the category of <i>"layabout"</i>. <br />
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This dichotomy might not be as a direct consequence of all those media spun recovery stories, but they do have influence.<br />
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Recovery stories where the patient is the hero, might appear to be applauding the character of the now smiling recovered individual, but I can't help thinking that the flip side of these stories - the implication that anyone could recover if their character was simply stronger - is unacceptable.<br />
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<b>I'd love to see mainstream media stories focus more on the treatments themselves</b>, and on how lives can be changed by them, than on the personal attributes and positive thinking of an individual. <br />
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Journalists - if you are reading this please consider that these stories, written with the best of intentions, are actually contributing to a bigger narrative - one that puts blame on all the chronically ill folk that don't recover. This can also lead to less public sympathy and greater difficulty in finding funding for proper research into medical treatments.<br />
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Many of us are determined to recover. That determination is of course fantastic. It gives us strength to see through difficult treatments, or to campaign for change. And I've no doubt some positive thinking can help with coping with a restricted lifestyle. However, please, let's be realistic about the place of <i>"determination"</i> in effective healing.<br />
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<b>Thank you.</b><br />
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***<br />
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<b>Related:</b><br />
<a href="http://sallyjustme.blogspot.co.uk/2015/05/well-enough.html" target="_blank">Well Enough to Drink Coffee</a>? May 2015</div>
<div style="text-align: left;">
<a href="http://sallyjustme.blogspot.co.uk/2016/03/work-sick-divide.html" target="_blank">Work-Sick Divide?</a> March 2016<br />
<a href="http://sallyjustme.blogspot.co.uk/2015/01/little-rant-about-positive-thinking.html" target="_blank">Little Rant about "Positive Thinking"!</a> Jan 2015</div>
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<br />Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com28tag:blogger.com,1999:blog-4941854812083391099.post-48229937498134191642016-06-26T15:25:00.000+01:002016-06-29T16:54:17.198+01:00ME Mortality<div style="display: inline !important;">
<b><b><b><b>I have written before about the "living death" of very severe ME, </b>and of patients clinging to life, desperately hoping for medical progress to rescue them. Sadly, some patients don't survive long enough. </b></b></b></div>
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<b><b><b><b></b></b></b></b><br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAEbQ-qTkLcfu0KsSHT2JrCtyqdAWavSceYcgp3ah89KK4lklbr_cUmY2_xVtkljuemnFsjnsZgIf1H0nfumIaf7QVkZsYPBRLzabyAkq2E3cDvfI6SImvQzYjNTElWdESPU6RYCq5G55A/s1600/blue+flower.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="176" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAEbQ-qTkLcfu0KsSHT2JrCtyqdAWavSceYcgp3ah89KK4lklbr_cUmY2_xVtkljuemnFsjnsZgIf1H0nfumIaf7QVkZsYPBRLzabyAkq2E3cDvfI6SImvQzYjNTElWdESPU6RYCq5G55A/s200/blue+flower.png" width="200" /></a>In the last weeks I have heard of the untimely deaths of five ME patients: </div>
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<b>Jodi Bassett, </b></div>
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<b>Louise Ramage, </b></div>
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<b>Pat Blankenship,</b></div>
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<b>Tink Bastion and </b></div>
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<b>Linda Hayes Burke. </b></div>
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I knew none of these ladies in real life, but their deaths nonetheless feel like a punch in the gut. </div>
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Theirs are not the only ME deaths I've encountered either. The online ME community often morns losses from its ranks, but these five deaths, occurring in such quick succession, highlight a sensitive issue - ME mortality.</div>
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<b>So why, knowing ME deaths occur, is ME research is still so agonizingly slow? </b></div>
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Why is it still hampered by such a significant lack of government funding world over? </div>
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Certainly, noises are being made by government bodies about future funding, but patients sense a complete lack of urgency, when it comes to seeking answers through biomedical research. </div>
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It seems the pounds and dollars are slow to appear for the types of studies we need. </div>
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<b>Another question: </b>Why do we still have publications in respectable journals that describe ME as a condition where mind-over-matter types of therapies are effective? </div>
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<b>Do deaths not indicate something more serious? </b> </div>
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There is a saying that events can become "just another statistic", but what if those statistics are never collected? </div>
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<b>Are the deaths of ME patients recorded? If not, why not?</b></div>
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The frustration that shows in my writing today is, I know, felt by many. </div>
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I hope awareness of the urgent needs of Severe ME patients will one day be exposed. I hope the outrage our community feels at the untimely deaths of patients like Jodi, Louise, Pat, Tink and Linda, will grow to become a public outrage. </div>
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I hope many more who are not affected by ME will start to ask questions about our situation.</div>
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<b>In the mean time, those of us remaining, and still able to campaign, must do all we can to bring ME to the attention of medical professionals and key health decision makers - where ever we are - world over. </b></div>
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I'm doing what I can.<br />
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<b>**********</b><br />
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<b>Post Script: </b>Brought to my attention in comments:</div>
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<b>Memorial pages:</b><br />
<a href="https://www.facebook.com/groups/MEMemorial/">https://www.facebook.com/groups/MEMemorial/</a><br />
<a href="http://www.ncf-net.org/memorial.htm">http://www.ncf-net.org/memorial.htm</a></div>
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<a href="http://www.hfme.org/mememoriallist.htm">http://www.hfme.org/mememoriallist.htm</a></div>
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<b>And a post by Jennifer Spotila on Mortality</b></div>
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<a href="http://www.occupycfs.com/2014/07/07/mecfs-mortality/">http://www.occupycfs.com/2014/07/07/mecfs-mortality/</a><br />
<br />
<b>And from Leela - two more patients: </b><br />
"Sally. I reviewed the ME/CFS Memorial Page and found that 2 other ME patients, that I didn't know, <b>Sarah Ellis</b> and <b>Pam Carmichel</b>, died in May along with Pat. So that is 7 that we know of in the last 2 months. And how many are unrecorded? " - Seven patients in such a short time, it is almost too much to take in. :(<br />
<b><br /></b>
<b>Via a Twitter comment:</b><br />
<b><a href="http://www.name-us.org/ResearchPages/ResearchArticlesAbstracts/JasonArticles/Jason2005Mortalityfull.pdf" target="_blank">Causes of Death Among Patients With Chronic Fatigue Syndrome (2006)</a></b><br />
LEONARD A. JASON, KARINA CORRADI, SARA GRESS, SARAH WILLIAMS, and SUSAN TORRES-HARDING. DePaul University, Chicago, Illinois, USA<br />
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<b>And finally a link to my post "Living Death Disease": </b> <a href="http://sallyjustme.blogspot.co.uk/2014/08/living-death.html">http://sallyjustme.blogspot.co.uk/2014/08/living-death.html</a><br />
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Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com18tag:blogger.com,1999:blog-4941854812083391099.post-1964779802160938752016-06-15T13:15:00.000+01:002016-06-15T14:37:20.584+01:00The Question of Sleep! (& N:Rem tablets)<b>Unrefreshing sleep is a symptom of ME, and of many other long term conditions.</b> Indeed, the topic of night-time hours (and of making them as comfortable and restorative as possible) is one that is often debated online. <br />
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Luckily for me, I was in the right place at the right time and was offered a free trial of these N:rem foam mattress toppers, in exchange for an honest review of them on my blog.<br />
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<b>Disclosure notice: </b><i>"I have been given this product as part of a product review through the Chronic Illness Bloggers (<a href="http://chronicillnessbloggers.com/chronic-illness-bloggers/" target="_blank">http://chronicillnessbloggers.com/chronic-illness-bloggers/</a>) network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "</i><br />
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<b>Background:</b> I had seen these mattress toppers mentioned generally favourably on various FaceBook groups, and so I understood that they worked on the principle of giving different parts of our body more or less support according to individual need. This seemed so sensible and simple, that I knew I had to give them a go.<br />
<br />
<b>The N:rem website can be seen here:</b> <a href="https://nremsleepsystem.co.uk/" rel="nofollow" target="_blank">https://nremsleepsystem.co.uk/</a> and the toppers viewed here: <a href="https://nremsleepsystem.co.uk/topper/" rel="nofollow" target="_blank">https://nremsleepsystem.co.uk/topper/</a><br />
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<b>Before my month's trial</b>, I found I could mostly sleep through the wee small hours of the night provided I went to bed an hour after midnight and then rose before seven o’clock. Trying to stay in bed longer did not produce more sleep - yet I also knew I needed more sleep than this short window provided. Part of my problem, I think, was discomfort making me restless. (I have been attending a chiropractor for many years to keep my back "right"!)<br />
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<b>The trial N:Rem system</b> consists of 5 tablets of foam, of differing densities, that can be placed over your existing mattress. The idea is to re-arrange these tablets so that the softest ones are beneath pressure points that cause you bother, and the firmer ones are then placed to give more support to less tender areas.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht6AS_5zhKra9iX2SPjkwLRxKNTM1xDMOtNPCLCc5wq-Sg5rMiFGYvL9fieNO9ZfE0e88rPEuE_itw-KQPp9vsmbaJ4xxtg1Ngz-WqlSSX8w1_LtA3_v_aR-rwHdycx1gxgPZj9QDSkOem/s1600/P1230453.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht6AS_5zhKra9iX2SPjkwLRxKNTM1xDMOtNPCLCc5wq-Sg5rMiFGYvL9fieNO9ZfE0e88rPEuE_itw-KQPp9vsmbaJ4xxtg1Ngz-WqlSSX8w1_LtA3_v_aR-rwHdycx1gxgPZj9QDSkOem/s320/P1230453.JPG" width="320" /></a></div>
On receiving the huge delivery box from the N:rem people, I immediately placed them over my mattress according to one of the patterns in the accompanying literature. I then snuggled down enthusiastically for the first night. <br />
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Sadly, that first arrangement did nothing good for my sleep whatsoever! The firmest tablet was WAY too firm for my liking. I pulled it out and relegated it to the bottom of my bed, where my even my feet rarely reach!<br />
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<b>Re-arranging the tablets over the next couple of nights helped me fine-tune an arrangement that suited my personal needs</b>, and remarkably as the month of the trial progressed, I found that I was starting to sleep on longer each morning. Then I discovered that I could also head to bed earlier, and still sleep right through the small hours of the night.<br />
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The scientist in me says that this result might not be entirely due to the mattress toppers - that maybe some other factor was at play?<br />
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However, the part of me that just happens to like sleeping well, won the internal debate with the logical argument that - I was mighty pleased to get the toppers back again, after I lent them to a friend for a couple of nights!<br />
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<b>So the end result is that I really do like this system.</b> However I have one very small suggestion for improvement. I think it would be nice to have the option of a narrower piece so that I could place a small slightly firmer strip just about my waist level.<br />
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<b>Overall Conclusion: Thumbs Up! </b><br />
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And, I’m seriously tempted to get one of their full mattress options in the near future.<br />
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****<br />
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<b>PS</b> I probably shouldn’t admit this - but when I took the trial on, and heard that I could keep the tablets after the trial, I remember thinking that if I really didn’t like them, that at least they would make good dogs beds! <b>Well I’m sorry Finn, but you lost out chum!</b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinHfvpaTSJlcGCofGcXH2fZiGFwo_swNy1IbbzQHTL32chsUBxQB7iQ6-dwIRJdAdg_af5o3d_hYizq__Pt4LQQOABB876aFXhf3MvFAYRVvDbeDTFByqvtowUTrrLuhjeFjF7d7mFVvWJ/s1600/P1230461.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinHfvpaTSJlcGCofGcXH2fZiGFwo_swNy1IbbzQHTL32chsUBxQB7iQ6-dwIRJdAdg_af5o3d_hYizq__Pt4LQQOABB876aFXhf3MvFAYRVvDbeDTFByqvtowUTrrLuhjeFjF7d7mFVvWJ/s320/P1230461.JPG" width="320" /></a></div>
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Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com2tag:blogger.com,1999:blog-4941854812083391099.post-85384481167736028572016-06-11T22:59:00.001+01:002016-06-12T12:46:10.973+01:00Chasing Competent Care conference report<br />
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<b>Hope 4 ME & Fibro Northern Ireland ran an ambitious and exciting conference on Monday 6th June in The Stormont Hotel, Belfast. The conference, “Chasing Competent Care” delivered a strong message calling for change to the currently inadequate care situation for ME and fibromyalgia patients in Northern Ireland.</b></div>
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<b>Chairperson, Martina Marks</b> opened the meeting, welcomed everyone and thanked the Big Lottery Fund for their sponsorship of the event. Her welcome was followed by an empassioned plea from <b>Joan McParland</b>, the founder and treasurer of Hope 4 ME & Fibro NI, to have medical professionals take patients’ symptoms seriously. Joan explained that she had been ill, and operating at less than 30% of her normal capacity, since 1999. In that time no effective treatments had been offered, and one consultant had even suggested she was simply reading too much into her symptoms and that she should see a psychiatrist!</div>
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Joan thanked the many volunteers and family members who made the event possible, and also the medical professionals and MLAs in the audience for taking time to attend.</div>
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<b>Sally Burch</b>, another charity trustee, then pointed out that ME (myalgic encephalomyelitis) and fibromyalgia are both disorders recognised by the World Health Organisation. She then explained that the most severely affected by ME could be left bed-bound, tube fed and lying in darkened rooms for weeks, months and years! She further described the severely debilitating nature of fibromyalgia and how the invisible pain that sufferers endure can have devastating life consequences. Sally outlined the symptom overlap between these conditions and suggested that biomarker development and medical research was now urgently required.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizzWg0OVAMN8Xmk4X2rEQfD3FmeaDcAytrFX3E8ORyB2aLh9J3MSMdtzeJw616IGGfVlubhM0dUNvVgeowryj-d9GeDwm6nAu1eUib3Vm_c7M2pt5IS3Qrbq34oI3EjrkwoN6ZwnmISTzn/s1600/IMG_2850.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizzWg0OVAMN8Xmk4X2rEQfD3FmeaDcAytrFX3E8ORyB2aLh9J3MSMdtzeJw616IGGfVlubhM0dUNvVgeowryj-d9GeDwm6nAu1eUib3Vm_c7M2pt5IS3Qrbq34oI3EjrkwoN6ZwnmISTzn/s200/IMG_2850.JPG" width="200" /></a>Lined up, to the side of the speakers’ podium, was a haunting display of over 200 pairs of empty shoes. These were part of the global <b>#MillionsMissing</b> campaign. Each pair of shoes carried a tag with the name of a patient unable to participate in their active lives due to ME and/or fibromyalgia. During the conference many attendees took time to read the comments on the tags and to consider the magnitude of the devastation caused by these largely forgotten and ignored conditions.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizzWg0OVAMN8Xmk4X2rEQfD3FmeaDcAytrFX3E8ORyB2aLh9J3MSMdtzeJw616IGGfVlubhM0dUNvVgeowryj-d9GeDwm6nAu1eUib3Vm_c7M2pt5IS3Qrbq34oI3EjrkwoN6ZwnmISTzn/s1600/IMG_2850.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><br /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEX678DKP17G675p6870Zh-bF8eGPZt0bXUQ1P8PCFfhfX0bV3qp3PEClDuaQyYFz6g0NdvjxEyFk98aMJ3QYFMPSVEBKCbJqXUvqrGhGDFQUWE6yavTJnPDOF8umwvGbGW5D46l7jvfrf/s1600/Joe.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEX678DKP17G675p6870Zh-bF8eGPZt0bXUQ1P8PCFfhfX0bV3qp3PEClDuaQyYFz6g0NdvjxEyFk98aMJ3QYFMPSVEBKCbJqXUvqrGhGDFQUWE6yavTJnPDOF8umwvGbGW5D46l7jvfrf/s200/Joe.jpg" width="195" /></a>First speaker up was<b> Dr Joe McVeigh</b>, who outlined the problems with exercise and fibromyalgia. He explained that whilst exercise is important for maintaining health, that it must be conducted at a level manageable for each individual patient. He called this the “Goldilocks approach”, and explained that at no time should attempted exercise cause a patient to relapse.</div>
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<b>Professor Malcolm Hooper</b> next gave a strong talk berating the inadequacies and misleading conclusions of the PACE Trial. At one point, he suggested that the PACE Trial was potentially fraudulent and told us that he had once even said as much in The House of Lords. This elicited a spontaneous round of applause from the audience. Feelings run high amongst patients on the PACE trial, mostly because it has been used to support the NHS recommended therapies of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), both of which have been demonstrated to cause harm in patient surveys.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnj6WBvf7RWDdwDE-ewf4Y9Ah7rqWsVmyn29KIdfzkDBQzVVUubkhctepp4DNQIfJDdFU2LHFo-yYq00FZ82oCuidOtmLKAG5pXjPSE4OM_SiXWocZX_M8Q9ebOa2AWHPLwVD8fVZg2HlT/s1600/malcolm+hooper.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="202" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnj6WBvf7RWDdwDE-ewf4Y9Ah7rqWsVmyn29KIdfzkDBQzVVUubkhctepp4DNQIfJDdFU2LHFo-yYq00FZ82oCuidOtmLKAG5pXjPSE4OM_SiXWocZX_M8Q9ebOa2AWHPLwVD8fVZg2HlT/s400/malcolm+hooper.jpg" width="400" /></a></div>
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Professor Hooper questioned the motives of the PACE trial authors in promoting results that carry such marginal benefits and such great potential risks. He recommended that patients reference Dr Mark Vink’s paper, <a href="https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-2-124/JNNB-2-124.pdf" target="_blank">“The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review”</a>, any time they were asked to undertake these therapies.</div>
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After this lively and well received talk, the conference paused for a comfort break. The weather was uncharacteristically balmy for Northern Ireland, and some of the audience sat outside in the evening sun as they contemplated the issues raised.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfxjipE3jTnpqjN5f0bkgIQ2WeW85SJz1ZII4dk1nmkCWq_bLmXdPqge1BQFKVlbN8MxtWCVhKHv2EXWbY3kLcf_63RLn8uJQ2H5duAY3SXzDQ3esNV_H_dosE5EbKx3qkuxnSdYRjXcKD/s1600/natalie.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfxjipE3jTnpqjN5f0bkgIQ2WeW85SJz1ZII4dk1nmkCWq_bLmXdPqge1BQFKVlbN8MxtWCVhKHv2EXWbY3kLcf_63RLn8uJQ2H5duAY3SXzDQ3esNV_H_dosE5EbKx3qkuxnSdYRjXcKD/s200/natalie.jpg" width="147" /></a><b>Natalie Boulton</b>, carer to her daughter who has severe ME, spoke next. She opened by showing a clip from the video “Voices from the Shadows”, that gave the audience a disturbing insight into the annihilation caused by very severe ME. Natalie told us she had recently followed up with some of the patients from the video and found many of them had worsened, and that both Emily Collingridge and Lyn Gilderdale had since died. She spoke of the horror of the treatments doled out by psychiatrists who believed patients to be faking their illness. Hers was a genuinely moving and sobering talk.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm3XFAzz0ZMptgia_H-O34bzXzg_7AbqZe1IJL5s4x3FvAH6NkE9ZdFHfKVrjMJaLnG5mmzN-41ucUr56TYwUYrovkCfvi6-vn1OPcfrJNc7S_knZAGbkzXxU7Up01dB0SiNqB_VkK3944/s1600/Mad.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm3XFAzz0ZMptgia_H-O34bzXzg_7AbqZe1IJL5s4x3FvAH6NkE9ZdFHfKVrjMJaLnG5mmzN-41ucUr56TYwUYrovkCfvi6-vn1OPcfrJNc7S_knZAGbkzXxU7Up01dB0SiNqB_VkK3944/s320/Mad.jpg" width="320" /></a>Next <b>Professor Mady Hornig</b> from Columbia University, USA, gave a detailed and highly informative account of her work towards developing blood biomarkers. She explained how immunity and gut microbiota can be linked to the brain, its functioning and mood. She talked about the epigenetic changes that can occur in the microbiome during a person’s lifetime and the link to serotonin production. She also talked about measuring blood molecules such as cytokines before and after an exercise challenge in ME patients, and comparing these changes to healthy controls. These cytokines being the most promising as potential biomarkers. Although much of what she described cannot be simply summarised, the audience was left with a strong feeling that Professor Hornig is now working determinedly to solve the biochemical riddles produced by ME.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Jo9wqsF9aq_0HVFV3mpaUgqQWbLUp3xcu-wCaGw_srmUMINSTzM91Bxnp7Qkdn18RJq_aR_VOfK8uzxcCmGdk1a64BxhdBm0vS1YU0CXwAAQWEtkdbG2aQFr6NFpVoqhX1Ae84tkKkwC/s1600/Dr+Bell.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="172" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Jo9wqsF9aq_0HVFV3mpaUgqQWbLUp3xcu-wCaGw_srmUMINSTzM91Bxnp7Qkdn18RJq_aR_VOfK8uzxcCmGdk1a64BxhdBm0vS1YU0CXwAAQWEtkdbG2aQFr6NFpVoqhX1Ae84tkKkwC/s200/Dr+Bell.jpg" width="200" /></a><b>Dr Pamela Bell</b> then took the podium to talk about the problem with pain. Dr Bell has worked extensively in the field of pain, and is now chair of the Pain Alliance Northern Ireland. She emphasised the widespread nature of chronic pain and its disabling effects, noting that once pain becomes chronic it no longer serves a useful purpose in the body. She recognised the difficulties with effectively treating ongoing pain and explained that different types of pain needed different drug types to alleviate symptoms.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPial_gq5q3t-6Ao5V3NNEqGs_4Nd6X1cSE8X_ZjPfJQUheNk7KEaIrJ31pMXwBcYL4VBi_qFhdJE8VwNwHzWAgcQ7Q6uuC6706I2wPOmXzm4mGNx6siOzxmngZeyK6ImGRwiUoA4RQlTS/s1600/louise.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPial_gq5q3t-6Ao5V3NNEqGs_4Nd6X1cSE8X_ZjPfJQUheNk7KEaIrJ31pMXwBcYL4VBi_qFhdJE8VwNwHzWAgcQ7Q6uuC6706I2wPOmXzm4mGNx6siOzxmngZeyK6ImGRwiUoA4RQlTS/s200/louise.jpg" width="168" /></a>The final speaker of the evening was <b>Louise Skelly</b> from the Patient and Client Council of Northern Ireland. She spoke of her frustration at trying to bring about change to the current impasse with Health and Social Care Board in Northern Ireland regarding the care on offer for ME and fibromyalgia patients. She spoke of her determination to follow through with the campaign to improve the situation, and of the great need of these neglected patient cohorts.</div>
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Martina Marks then brought the conference to a close. Overall the atmosphere of the evening was one of both frustration, and of optimism. Frustration that change seems to be taking so long to happen and for the injustices that have occurred along the way, but also optimism that things are starting to gain momentum towards real medical advances for the future.</div>
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As the hall emptied, the lines of lonely shoes from the <b>#MillionsMissing</b> campaign were gathered up, their labels still attached, and some-one was heard to say: <b>“These are the folk we do all this for - they will not be left forgotten any longer.”</b><br />
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<b><br />PS Edit to add copy of the letter we wrote to all attendees:</b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4eIT2bxyabaZMOdx_JxO9BsvkaXeng6I7fER1YBcLpD9eTkHtZtrXETmoE50LEbRdYRi-AtCtPaMHeAhPL2ohlsYWpqvsI13PjStRRDIWxJyEUqq4MrPsOnPegNYQf0wYnPLD-VqOiv4_/s1600/hope+square.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="196" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4eIT2bxyabaZMOdx_JxO9BsvkaXeng6I7fER1YBcLpD9eTkHtZtrXETmoE50LEbRdYRi-AtCtPaMHeAhPL2ohlsYWpqvsI13PjStRRDIWxJyEUqq4MrPsOnPegNYQf0wYnPLD-VqOiv4_/s200/hope+square.png" width="200" /></a></div>
6th June 2016<br />
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<b>Dear “Chasing Competent Care” conference attendee, </b><br />
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We are delighted that you have taken an interest in the currently unacceptable care situation for ME & fibromyalgia patients in Northern Ireland. <br />
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A large part of the problem is that diagnosis is difficult without accepted biomarkers, and, that there are no specialist consultant physicians in Northern Ireland to whom GPs can refer patients.<br />
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Misdiagnosis is known to be a problem in the UK<span style="font-size: xx-small;">1</span>, and based on patient stories misrepresentation of these illnesses as mental health problems is prevalent. <br />
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Furthermore the NICE recommended treatments of Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) that are offered for ME, are now being widely questioned, and patient reports demonstrate clear harms from GET<span style="font-size: xx-small;">2,3</span>.<br />
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CBT and GET are based on the biopsychosocial premise that patients are no longer physically ill. The “PACE trial” <span style="font-size: xx-small;">4</span> that purports to provide evidence to support these therapies is now coming under considerable scientific scrutiny<span style="font-size: xx-small;">5</span>. Suspiciously, the PACE trial researchers are also refusing to share the data that would validate their claims<span style="font-size: xx-small;">6</span>. <br />
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The Health and Social Care Board in Northern Ireland is currently intending to roll out a Condition Management Programme (CMP) run solely by occupational therapists without the support of a medical consultant-led clinic. <br />
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The HSCB lead commissioner for ME and Fibromyalgia services has confirmed that this CMP was initially based on the PACE trial methods. It is now clear that CBT and GET show no long term treatment benefit<span style="font-size: xx-small;">7</span>, and as mentioned earlier harm from GET is widely reported<span style="font-size: xx-small;">2,3</span>. The current staff of the CMP pilot are doing their utmost to help patients within their remit but they lack the support of a consultant physician with specialist biomedical knowledge. <br />
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<b>It is time for change! Can you help us? </b>Perhaps you could alert health service providers to the difficulties faced by ME and fibromyalgia patients? Or write to the new Health Minister to appeal for change? <br />
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The display of empty shoes at the side of the hall is part of the #MillionsMissing worldwide campaign<span style="font-size: xx-small;">8</span> orchestrated by <a href="http://meaction.net/">MEAction.net</a>. The shoes represent those who are unable to participate in normal life because of devastating long-term illness.<br />
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<b>We urgently need the support of healthy advocates and sympathetic medical professionals so we can change the current apathy towards the plight of these patients.</b><br />
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Hope 4 ME & Fibro Northern Ireland<span style="font-size: xx-small;">9</span> is a registered charity run by patient volunteers. We support the scientific view that myalgic encephalomyelitis (ME) and fibromyalgia are a physical disorders, and that scientific biomedical research is our best hope towards their understanding. Thank you for taking an interest.<br />
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<b>We hope you will help spread our message of concern. </b><br />
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<b>Best wishes,</b><br />
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<b>Trustees and Committee of Hope 4 ME & Fibro Northern Ireland</b><br />
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<b>References:</b><br />
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1. The Newcastle NHS Chronic Fatigue Syndrome Service: Not all fatigue is the same. Newton JL, Mabillard H Scott A Spickett G (2010) <a href="http://www.ncbi.nlm.nih.gov/pubmed/21132135">http://www.ncbi.nlm.nih.gov/pubmed/21132135</a><br />
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2. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Tom Kindlon <a href="http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf">http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf</a><br />
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3. ME Association: Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS | 29 May 2015 <a href="http://www.meassociation.org.uk/2015/05/23959/">http://www.meassociation.org.uk/2015/05/23959/</a><br />
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4. PACE Trial: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext 5. Virology Blog: Trial by Error: <a href="http://www.virology.ws/2015/10/21/trial-by-error-i/">http://www.virology.ws/2015/10/21/trial-by-error-i/</a> and further articles on Virology Blog here: <a href="http://www.virology.ws/mecfs/">http://www.virology.ws/mecfs/</a><br />
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6. Valerie Eliot Smith has recorded events regarding refusal of PACE Trial researchers to share data: <a href="https://valerieeliotsmith.com/tag/pace-trial/">https://valerieeliotsmith.com/tag/pace-trial/</a><br />
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7. The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A review <a href="http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php">http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php</a><br />
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8. #MillionsMissing A global day of protest for ME and CFS: <a href="http://millionsmissing.meaction.net/">http://millionsmissing.meaction.net/</a> with Belfast details here: <a href="http://millionsmissing.meaction.net/locations/united-kingdom/belfast/">http://millionsmissing.meaction.net/locations/united-kingdom/belfast/</a><br />
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9. Hope 4 ME & Fibro NI website: <a href="http://www.hope4mefibroni.btck.co.uk/">http://www.hope4mefibroni.btck.co.uk/</a> and Facebook announcements page: <a href="https://www.facebook.com/Hope4MEFibro/">https://www.facebook.com/Hope4MEFibro/</a></div>
Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com0tag:blogger.com,1999:blog-4941854812083391099.post-9215622365003889272016-05-25T19:54:00.000+01:002016-05-25T22:34:13.885+01:00#MillionsMissing & Northern Ireland<div class="separator" style="clear: both; text-align: left;">
Today is 25th May and the day of the global <b>#MillionsMissing </b>campaign, where empty shoes are being used to represent active lives lost to ME.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Zo3Z8j3jF5GI0sOiAbuKqxnqVwuayx0KJX40EQnXw2twAzAfZoCjOJ9HnpPkG86kHeU32MAjLJWaLP4QJVRE1vhq3iwrB6fH-yc7YZefX-u1JAs9SSSdh-AqH4fbS1JwanesW3ZjZC-E/s1600/shoes.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="107" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Zo3Z8j3jF5GI0sOiAbuKqxnqVwuayx0KJX40EQnXw2twAzAfZoCjOJ9HnpPkG86kHeU32MAjLJWaLP4QJVRE1vhq3iwrB6fH-yc7YZefX-u1JAs9SSSdh-AqH4fbS1JwanesW3ZjZC-E/s320/shoes.png" width="320" /></a></div>
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These are my shoes, but they don't get the wear they deserve. </div>
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Since March 2012 I have been unable to work, and incapable of walking normal distances. The soles of these shoes remain without the scuffs from the paths that I might have trod since the day that I got ME. </div>
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Of course I found other paths in life - not ones to "walk", but rather ones I've been pursuing in a more sedate manner. This blog is one such new path. </div>
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My activity with the charity <b>Hope 4 ME & Fibro Northern Ireland</b> is another.</div>
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In fact Hope 4 ME & Fibro NI are supporting #MillionsMissing campaign with an empty shoe demonstration at our up and coming conference - <b>"Chasing Competent Care" on Monday 6th June.</b> You may recognise the shoes in this flyer for the event!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtGDXes4B8lXrPx0jMIJloRsbuFTMMnewbbsopKrzOPeDZwv_hutBYEHmLrfY71dcXklCNAHfSqG4HcwWzmxcsJb4U_UaWgAg3HAPKCVWuupiYUOmUWiLQzKlBFsQLy_FFIl-0vBdqGXs3/s1600/MillionsMissing2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtGDXes4B8lXrPx0jMIJloRsbuFTMMnewbbsopKrzOPeDZwv_hutBYEHmLrfY71dcXklCNAHfSqG4HcwWzmxcsJb4U_UaWgAg3HAPKCVWuupiYUOmUWiLQzKlBFsQLy_FFIl-0vBdqGXs3/s320/MillionsMissing2.png" width="294" /></a></div>
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We hope to get a big attendance from patients, carers, medical professionals and other interested individuals. There has been a lot of interest to date. <i>(Click on the images below for more detail)</i><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1yKzguG_4SHzQf2HQ9m7B2xUu-hEv3YtT7j5-n_CGeZHMRqkLtkmSK3pQoi2C_0IhwQwkwHImorNMTe7Gs5WEfh6yOqhR-uN0obmlLgFJ4ENec72h02kXbv312JqjQ5Y5vfHNqOfLXRYe/s1600/CCCFlyer1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1yKzguG_4SHzQf2HQ9m7B2xUu-hEv3YtT7j5-n_CGeZHMRqkLtkmSK3pQoi2C_0IhwQwkwHImorNMTe7Gs5WEfh6yOqhR-uN0obmlLgFJ4ENec72h02kXbv312JqjQ5Y5vfHNqOfLXRYe/s320/CCCFlyer1.png" width="320" /></a></div>
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Care for the estimated 7,000 ME patients and some 22,000 fibromyalgia patients in Northern Ireland is almost non-existent and, where it is provided it is largely inadequate. <br />
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<b>To quote Joan McParland:</b></div>
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<i>"If you're a patient in NI and completely satisfied with your quality of life and having no hope for a better future, then just ignore and eat more cupcakes!</i><br />
<i>: the lack of a dedicated NHS Consultant</i></div>
<div style="text-align: center;">
<i>: the lack of supporting specialist NHS services</i></div>
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<i>: the lack of education within the medical community</i></div>
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<i>: the lack of awareness within the general public</i></div>
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<i>: the fact it's almost impossible to get an accurate diagnosis</i></div>
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<i>: the fact you will most likely be sent to mental health clinics</i></div>
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<i>: the fact you will be advised to exercise and little else.</i></div>
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<i>: the fact HSCB have done nothing since 2009 other than</i></div>
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<i>agree the situation is 'frustrating.'</i></div>
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<i>: the fact HSCB are insisting future NHS services will offer </i></div>
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<i>only Condition Management Programmes claiming 'many'</i></div>
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<i>patients will return to work after 12 'talking treatments!'</i></div>
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<i>: the fact HSCB medical advisers have reversed the decision </i></div>
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<i>to give financial support for our medical professionals </i></div>
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<i>education training events unless we solely promote NICE </i></div>
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<i>Guidelines (includes GET/CBT and little else)</i></div>
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<i>: the fact parents are being put under investigation if their</i></div>
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<i>child does actually get a diagnosis of ME.</i></div>
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<i>: the fact, many medical professionals are interested enough </i></div>
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<i>to actually request educational material from our patient </i></div>
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<i>charity.</i></div>
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<i>: the fact none of the above will change by talking, moaning, </i></div>
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<i>groaning sessions, being frustrated, being angry or just</i></div>
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<i>accepting the intolerable situation. </i></div>
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<i>And more....</i></div>
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<i>OR if at all able, join us in the Stormont Hotel on 6th June</i></div>
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<i>OR send a family member or friend.</i></div>
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<i>OR request your name be added to a pair of empty shoes here.......</i></div>
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<i><a href="https://www.surveymonkey.co.uk/r/CKTTPB3">https://www.surveymonkey.co.uk/r/CKTTPB3</a></i></div>
<div style="text-align: center;">
<i>OR post, deliver your empty shoes to any 'Hope' trustee, addresses available on request by PM."</i></div>
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<i>*</i></div>
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<i><br /></i></div>
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Our event is advertised on #MEaction.net here:<br />
<a href="http://millionsmissing.meaction.net/locations/united-kingdom/belfast/">http://millionsmissing.meaction.net/locations/united-kingdom/belfast/</a></div>
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<br /></div>
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Also you can keep up to date with Hope 4 ME & Fibro NI activities on our announcements page here:<br />
<a href="https://www.facebook.com/Hope4MEFibro/">https://www.facebook.com/Hope4MEFibro/</a></div>
<div style="text-align: left;">
<br />
Please also check out the <a href="https://twitter.com/hashtag/millionsmissing?f=tweets&vertical=news&src=hash" target="_blank">#MillionsMissing tag on Twitter. </a></div>
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<br /></div>
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<b>Thank you for your interest. </b></div>
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<br /></div>
Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com6tag:blogger.com,1999:blog-4941854812083391099.post-51412996866292363452016-05-12T11:00:00.000+01:002016-05-22T18:11:29.518+01:00#May12BlogBomb Link List for 2016<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjA5mHRQFBr7QyrA7ycticsC21dXmbrAokZd_4cBw-IIPaz1J4_psjlxNsAodbhbJ39hok7XX-S_txSWsN3_y7j4w32mqp6SVwMJtgt6YPIkudjQRjz1kN95U667GYcXPkLOUrqUKyyQyw/s1600/2016+link+list.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="188" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjA5mHRQFBr7QyrA7ycticsC21dXmbrAokZd_4cBw-IIPaz1J4_psjlxNsAodbhbJ39hok7XX-S_txSWsN3_y7j4w32mqp6SVwMJtgt6YPIkudjQRjz1kN95U667GYcXPkLOUrqUKyyQyw/s200/2016+link+list.png" width="200" /></a><b>Thank you to everyone who has submitted May 12th Awareness posts to #May12BlogBomb for 2016. </b><br />
<br />
Please use the <b>#May12BlogBomb</b> tag on social media when you share this list and blogposts from the list.<br />
<br />
I will be accepting and collating posts during the day, and up to 5pm latest, so if you are a blogger with a post you have written that you would like to be included, please visit <a href="http://sallyjustme.blogspot.co.uk/2016/04/may12blogbomb-please-submit-your-links.html" target="_blank">this post to complete the submission form </a>. <br />
<br />
<br />
<b>My Awareness Posts:</b><br />
<br />
Just ME: <a href="http://sallyjustme.blogspot.com/2016/05/disposable-energy.html" target="_blank">Disposable Energy?</a><br />
<br />
Just ME: <a href="http://sallyjustme.blogspot.co.uk/2016/04/some-days-all-days.html" target="_blank">Some Days - All Days</a><br />
<br />
Just ME: <a href="http://sallyjustme.blogspot.com/2016/05/preparing-to-princess.html" target="_blank">Preparing to "Princess" for Team Princess Hope (Updated)</a><br />
<br />
<br />
<b>Guest Posts on Just ME:</b><br />
<b><br /></b>
Just ME: <a href="http://sallyjustme.blogspot.com/2016/05/guest-post-from-hellytheelephant-spoons.html" target="_blank">Guest post from HellytheElephant - The Spoons Don't Work. . .</a><br />
<br />
Just ME: <a href="http://sallyjustme.blogspot.com/2016/05/guest-post-by-merelyexistingisme.html" target="_blank">Guest post by MerelyExisting is ME: I wish . . .</a><br />
<br />
Just ME: <a href="http://sallyjustme.blogspot.com/2016/05/guest-post-from-sarah-louise-hashtag.html" target="_blank">Guest post from Sarah-Louise: A hashtag has just made me cry</a><br />
<br />
<br />
<b>Posts on Independent Blogs: </b><br />
<br />
A Life Less Physical: <a href="https://alifelessphysical.com/2016/02/03/your-fibromyalgia-toolkit/" target="_blank">Your fibromyalgia toolkit</a><br />
<br />
Alan's Album Archives: <a href="http://alansalbumarchives.blogspot.co.uk/2015/05/mecfs-awareness-week-at-alans-album.html" target="_blank">'ME/CFS Awareness Week At Alan's Album Archives'</a><br />
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Artifacts of ME: <a href="http://artifactsofme.blogspot.co.uk/2016/05/what-hell-happened-with-that-ms.html" target="_blank">What Happened with that MS Diagnosis Anyway?</a><br />
<br />
Brainless Blogger: <a href="http://brainlessblogger.blogspot.com/2016/05/may12blogbomb-work-compramises.html" target="_blank">#May12BlogBomb Work compramises</a><br />
<br />
carolinekaisereditor.com: <a href="http://www.carolinekaisereditor.com/2016/05/12/a-different-kind-of-tired/" target="_blank">A Different Kind of Tired</a><br />
<br />
Chronic Fatigue & Me: <a href="http://losheps0212.blogspot.co.uk/2016/05/1-week-about-me.html" target="_blank">1 Week About ME</a><br />
<span style="font-weight: bold;"><br /></span>
Chronic Mom: <a href="http://www.chronicmom.com/2016/05/3-things-to-remember-during-a-fibro-flare.html/" target="_blank">3 things to remember during a fibro flare</a><br />
<br />
Fed Up with Fatigue: <a href="http://www.fedupwithfatigue.com/fibromyalgia-awareness-2016" target="_blank">What I wish others knew about fibromyalgia and ME/CFS</a><br />
<br />
Fibrodaze: <a href="http://www.fibrodaze.com/fmad-online-events-2016/" target="_blank">International Fibromyalgia Awareness Day Online Events</a><br />
<br />
Fibro Warriors ~ Living Life: <a href="http://fibrowarriorslivinglife.com/2016/05/11/why-is-may-12th-international-cfs-and-fibromyalgia-awareness-day/" target="_blank">Why is May 12th International CFS and Fibromyalgia Awareness Day?</a><br />
<br />
Grieving for me because of M.E.: <a href="https://grievingforme.wordpress.com/2016/05/12/today-is-me-awareness-day/" target="_blank">Today is ME Awareness Day…..</a><br />
<br />
Gwenfar's Garden: <a href="http://www.gwenfarsgarden.info/2016/05/garden-visiting-with-me.html" target="_blank">Garden visiting with ME</a><br />
<br />
Jan's Place: <a href="http://tanithsplace.blogspot.co.uk/2016/05/what-do-we-want-from-person-with-me.html" target="_blank">What do we want? From a person with M.E.</a><br />
<br />
Just A Spoonful Podcast: <a href="https://justaspoonfulpodcast.com/2016/05/12/may-the-12th-be-with-you/" target="_blank">May The 12th Be With You</a><br />
<br />
LENNAE'S WORLD: <a href="https://lennaesworld.com/2016/05/12/me-awareness-symptoms-with-me/" target="_blank">ME Awareness, Symptoms with ME</a><br />
<br />
Katie Cupcake Life With ME: <a href="https://katiecupcakelifewithme.com/2016/05/11/knowing-your-limits-does-not-make-you-negative-may-12-blog-bomb-chronic-illness-post/" target="_blank">Knowing your limits does not make you negative! </a><br />
<br />
Laura's Pen: <a href="http://wp.me/p3GD0A-hb" target="_blank">The M.E. Adventures comic: energy and exertion</a><br />
<br />
LavenderDojo: <a href="http://lavenderdojo.blogspot.com/2016/05/thyroid-immune-interactions-rt3-and-tgf.html" target="_blank">Thyroid-immune interactions; rT3 and TGF-beta1</a><br />
<br />
liebjabberings: ME/CFS: <a href="https://liebjabberings.wordpress.com/2016/05/12/mecfs-writers-personal-and-professional-inextricably-entangled/" target="_blank">Writer’s personal and professional inextricably entangled</a><br />
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Lightening the Shadow: <a href="http://www.darlanagel.com/blog/seven-years-may-be-a-turning-point" target="_blank">Seven Years May Be a Turning Point</a><br />
<br />
Little Wings: <a href="http://corinaduyn.blogspot.co.uk/2014/05/living-with-me-is-like-having-to-re.html" target="_blank">Living with M.E. is like having to re-invent yourself everyday</a><br />
<br />
ME/CFS Self-Help Guru: <a href="http://www.mecfsselfhelpguru.com/2016/05/what-i-want-you-to-understand-about-mecfs-for-may-12th-international-awareness-day.html" target="_blank">What I want you to understand about ME/CFS for May12th International Awareness Day</a><br />
<br />
ME Australia: <a href="https://meaustralia.net/2016/04/14/me-and-cfs-awareness-day-what-are-you-doing-on-may-12/" target="_blank">ME and CFS Awareness Week: 11 - 17 May</a><br />
<br />
<div style="font-weight: bold;">
</div>
MEcuperating: <a href="http://mecuperating.com/2016/05/04/living-with-m-e/" target="_blank">Living with ME</a><br />
<br />
Melanie Schickedanz on Huffington Post Blog: <a href="http://www.huffingtonpost.de/melanie-schickedanz/me-krankheit-pflegefall_b_9867802.html" target="_blank">Am 12. Mai ist der internationale ME-Tag</a><br />
<br />
ME Support: <a href="http://www.mesupport.co.uk/index.php?page=the-power-of-creativity" target="_blank">The Power of Creativity</a><br />
<br />
motherinlawsblog: <a href="http://motherinlawsblog.blogspot.co.uk/2016/04/dont-roll-your-eyes-at-me.html" target="_blank">Don't roll your eyes at ME!</a><br />
<br />
My Spoonie Life: <a href="http://jennyhelenmyspoonielife.blogspot.co.uk/2015/11/why-public-opinion-of-me-needs-to-change.html" target="_blank">Why the public opinion of M.E. needs to change</a><br />
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Sarah at Saje: <a href="https://sarahatsaje.wordpress.com/2016/05/06/isolation-and-me/" target="_blank">Isolation and ME</a><br />
<br />
Slightly Alive: <a href="http://slightlyalive.blogspot.co.uk/2016/05/for-may-12-2016-me-is-not-mysterious.html" target="_blank">For May 12, 2016: ME is not a "mysterious" disease.</a><br />
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Spoonseeker: <a href="http://spoonseeker.com/2016/05/10/out-of-the-blue/" target="_blank">Out of the Blue</a><br />
<br />
Sue Stevenson: <a href="https://suestevensonwriter.wordpress.com/2016/05/12/the-slow-rise/" target="_blank">The Slow Rise</a><br />
<br />
The Get Up and Go Guru: <a href="http://www.getupandgoguru.com/never-give-up-cfs-international-awareness-day-2016/" target="_blank">Never Give Up! – ME / CFS International Awareness Day 2016</a><br />
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The Person Who Disappeared: <a href="https://thepersonwhodisappeared.wordpress.com/2016/05/09/what-is-me-a-special-post-for-me-awareness-week/" target="_blank">What is ME? A special post for ME awareness week</a><br />
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<br /></div>
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Tips for ME: <a href="https://tipsforme.wordpress.com/12may2016" target="_blank">10 insights on life: Awareness through ME</a></div>
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Trishrhymes:<a href="https://trishrhymes.wordpress.com/2016/01/04/me-and-me/" target="_blank"> ME and me</a><br />
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Undies on the Outside: <a href="http://www.undiesontheoutside.org/#!blog-post/s9oci" target="_blank">Behind the Undies on the Outside Challenge</a><br />
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Utting-Wolff Spouts: <a href="https://uttingwolffspouts.com/2016/05/12/12th-may-how-i-dread-this-day-or-awareness-and-compassion-fatigue/" target="_blank">12th May, how I dread this day, or: Awareness and compassion fatigue</a><br />
<br />
Verbena Days: <a href="https://verbenadays.wordpress.com/2016/05/06/imagine-me/" target="_blank">Imagine ME</a><br />
<br />
<br />
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<b>****************</b></div>
<b><br />Previous Link Lists can be found here:</b><br />
<b><a href="http://sallyjustme.blogspot.co.uk/2015/05/may12blogbomb-2015-link-list.html" target="_blank">#May12BlogBomb 2015 Link List</a> </b><br />
<b><a href="http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html" target="_blank">May 12 Blog Bomb Link List</a> (2014)</b><br />
<br /></div>
Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com6tag:blogger.com,1999:blog-4941854812083391099.post-44008586174153723012016-05-12T08:30:00.000+01:002016-05-12T08:30:17.766+01:00Guest Post from HellytheElephant: The Spoons Don't Work. . .<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0mPxxpTizQPuUaKygpj_hcLTEm46VvzsYXBLgvXB7Pyo52rKCQ9hyphenhyphenfRWzHitwEJL1JQapJCdnuVmHAJ7z8ORHrmliVO6rFOq3kWof8mugguPBYMibsje2yhpN4_a5nHREGXySO38LHJSu/s1600/ac.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0mPxxpTizQPuUaKygpj_hcLTEm46VvzsYXBLgvXB7Pyo52rKCQ9hyphenhyphenfRWzHitwEJL1JQapJCdnuVmHAJ7z8ORHrmliVO6rFOq3kWof8mugguPBYMibsje2yhpN4_a5nHREGXySO38LHJSu/s1600/ac.png" /></a></div>
Over the last year, I have been reading as much as my tired and foggy little brain will let me, not only about the nuts and bolts of ME (I am all too familiar with that!), but about how to communicate the experience to the average chronic-illness-virgin. I am also a chronic pain sufferer and it is similarly difficult to explain to the average person what it is like to be in bad pain that is apparently never going to get better, and has no specific cause. <br />
<br />
Whilst friendships with healthy people have withered and fallen like crusty brown leaves to the ground, I have made new and warm connections with the very elderly and the chronically ill. I do not kid myself that this would have been probable (or even desirable) before I became a refugee, fleeing the world of wellness and finding a safe haven with those who are generous with the little they can offer.<br />
<br />
Nevertheless there IS a need to explain my deeply baffling illness. There are times I need to defend my corner, and need to know how to articulate the fuzziness of our illness to a ‘healthy’.<br />
<br />
I have discovered there is a whole new vocabulary for our diminished energy supplies, the best known being the ‘Spoon Theory’. For me at least I find it frustratingly unhelpful. In brief the idea is that a bunch of spoons, real or imagined, can be used to explain how the energy of a chronically sick person is drained: Eating breakfast: one spoon gone, taking a shower, minus another spoon and so on until spread like jam on the nearest mattress-‘spoonless’.<br />
<br />
This similie doesn’t work for the simple reason that on any given day I never know how many spoons I have to start with. Sure, I know if I have slept badly and wake grumpy and in pain, it will likely be a beast of a day, but it is not always so easy to predict. Some days are slow to get started and then I find a surprising burst of energy after my nap. Other times I feel quite good and energised first thing, only to crash at 11am and am forced to retreat to my bed for the duration. The explanation is obvious: someone is nicking my spoons!<br />
<br />
There is also the Energy Envelope (the amount of energy I have most days would feel easily into an envelope), Energy Account ( at the bank of un-co-operative where I can never get an accurate statement and someone keeps withdrawing my money), and Marbles (as with the Spoons, how do I know how many marbles I have or use?)…and don’t get me started on losing my marbles which becomes more likely with every day that passes..<br />
<br />
Why am I getting so steamed up about a handful of spoons, a virtual bank account and a lot of glass balls? Maybe it is because if I had a more ‘recognised’ long-term illness I would be getting treatment, not similes. <br />
<br />
We are told we must have a new way of seeing things, a new attitude to being sick. We must work 24/7 at being ill and in addition we must advocate for ourselves in a world that is baffled by our illness, and is barely funding research to help us LIVE again.<br />
<br />
It seems that when the medical profession can’t understand or cure something, they then turn the responsibility back to the patients. It can only be our own fault to have allowed ourselves to become ill with something that defies explanation: our punishment is to be forced to waste our minuscule energies on into ‘managing’ the unmanageable. Doctors telling us to pace more,is like the captain of the Titanic complaining that the ship is only sinking because the deckchairs are poorly arranged.<br />
<br />
It is good that many people find the spoons etc helpful, and yes, I know most of these ideas come from patients themselves. Maybe I was just not drawn that way. I don’t believe that life can be codified so readily. Whilst there are activities that always take up a lot of energy, most things vary according to other elements that are completely outside my control: the season, time of day, other infections, my cycle,OTHER PEOPLE, receiving good/bad news, and for me how Mr H is- as there are two of us chronically ill at the elephant house. I would have to be a master statistician to analyse the spoons out of that lot!<br />
<br />
ME is no respecter of our plans, schemes and attitudes. To paraphrase the saying ‘ ME goes on regardless, whilst you are busy making plans’<br />
<br />
********<br />
<br />
This post was first published on the <a href="http://forums.phoenixrising.me/index.php?entries/the-spoons-dont-work.1943/">Phoenix Rising Blog</a> by HellytheElephant and is reproduced here with permission. The elephant picture is the one used by HellytheElephant as a profile picture.Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.com1