Friday, 27 March 2015

10 Things ME Patients Need NOW!

I am fully convinced that without the support of other patients online, I would have pushed on in the earliest stages of my illness to become Severe! It is with this thought in mind that I explore what ME patients now need.

My experience when first ill, was that my (sweet, but uninformed) doctor told me to take 3 short brisk walks a day!! At this stage I was getting worse quite quickly.

Luckily, online patients soon warned me to stop pushing myself so I abandoned these walks. As a result my rate of decline slowed.  However, I was - and still am - struggling to recognise how little I needed to do, in order to prevent further damage.

In my view, it is therefore vital that front line medical professionals are made aware of the very significant harm that can be done by their failure to advise "rest and recuperation" for newly ill patients.

So what do we the ME patients need right now?  This is my wish list:

  1. Regional specialist clinics: These should be led by consultant physicians who are 100% behind the biomedical approach to ME as a physical illness (and who reject the biopsychosocial approach that promotes graded exercise and cognitive behaviour therapies).
  2. Early patient referral to one of these specialist clinics: This should happen as soon as the problem is evident, so that a full array of tests can be carried out, and the seriousness of the condition fully assessed. Waiting list times must also be kept short.
  3. Pacing and resting advice should be given at the earliest opportunity, and definitely prior to official diagnosis. The precautionary approach is important.
  4. Ongoing support should be offered on the practicalities of how to implement the dramatic change of lifestyle required.
  5. Medical professionals should recognise that a "cure" is not yet available, but be happy to work with the patient to control symptoms, and to slow illness progression.
  6. Medical professionals need to formally recognise the severity of the illness, and so give patients the support they need to access benefits, and to communicate with employers.
  7. Practical home support should be readily available for those who become more severe, with recognition that travelling to the doctor may not be possible.
  8. Hospitals need to be made aware of the needs of the most severe patients so that going to hospital, is not in reality more harmful than staying at home untreated!
  9. A re-education programme for front line Health Professionals needs to be established to rid existing professionals of the notion that exercise is beneficial, and that patients simply aren't trying to get better!
  10. And finally FUNDING - Patients need to see that governments are taking this illness seriously enough to research it with a per patient expenditure commensurate with other debilitating illness.
Here in Northern Ireland, the ME patient groups have been campaigning for a Specialist Clinic. We are very concerned that the Health and Social Care Board would prefer to offer us a Nurse or Physio led Fatigue Clinic.  That is not what is needed!

The charities in N.Ireland have been united in their call for a consultant led clinic.  This is what the Newry and Mourne ME Fibromyalgia Support Group* (of which I am a Trustee) has said: 

Click on image to enlarge

On a more personal note, I would like to see medical professionals giving early guidance on how to use tools such as a Heart rate monitor, a Fitbit or even plain paper charts to help with pacing.  I think these things have helped me.

I am sure there are many more things that we need, but this list would be a good start!
Have I missed anything obvious?

*Edit:  On 7/7/15 
Newry and Mourne ME Fibromyalgia Support Group became
Hope 4 ME & Fibro Northern Ireland


Other posts that may be of interest:

ME Awareness:
Living Death Disease?? Aug 2014

Just ME: Blog Index

Managing Illness through Pacing;

Northern Ireland Conferences and Campaigns:
#InvisibleME Symposium - Belfast March 2015
The Northern Irish Situation for ME & Fibromyalgia March 2015

Saturday, 21 March 2015

Congratulations Greg! BJN Nurse of Year: 3rd Place

The prestigious British Journal of Nursing Awards were distributed last night and Greg Crowhurst was awarded 3rd place in the Nurse of the Year category!  

This is no small achievement considering that Greg is, in his own words, "an unpaid nurse carer".

Greg has told me that his 3rd place award has generated substantial interest about the ME situation, and that he is optimistic he can use this to open lines of communication towards improved services for Severe ME.

Personally, I would like to take this opportunity to congratulate Greg on this award, and to wish him well as he continues to campaign for the needs of those most severely affected by ME.

With his permission, I have copied his Facebook post from this morning:

"I CANNOT THANK THE BJN enough for the incredible honour of having been shortlisted for Nurse of the Year Award. It would not have been possible without the profound experience my wife and I have shared, growing always in love, understanding and partnership, through every moment of indescribable agony she has experienced with Severe Myalgic Encephalomyelitis (M.E.)

The award is a confirmation of all that is good and noble about the nursing profession, for even though I was only a runner-up last night, it is still an extraordinary achievement for an unpaid nurse carer to be recognised and validated in this way.

I had to make the difficult decision not to attend the Ceremony in person. It highlights the stark reality of caring for someone with this devastating, neglected neurological disease. My priority has to be my wife's health. In the end there is no greater choice.

People involved in the care of people with Severe/Very Severe ME have to make these choices every single day. I was proud to have been with the person who needed me, despite the loss and the cost.

My absence, on some small level, was a reminder of the many who could never attend such a wonderful, sparkling gathering, for the environment itself, the noise, the light, the people, the perfumes, the food, the movement, the alcohol, are impossibly out of reach for a person with Severe ME.

I would have loved to attend the award ceremony, the height of my nursing career.

Living and caring as I have for my wife, with an illness profile as great as someone with heart failure, late-stage AIDS, Multiple Sclerosis or a person undergoing chemotherapy - for well over twenty years, I have witnessed unspeakable, intense physical suffering, without a moment's relent, hope of medical treatment or a cure.

When you are thrown in at the deep end of this neglected, devastating neurological illness, it redefines your whole life. In the absence of medical respect, representation and expertise, especially within the profession you love passionately and believe in, you have to speak up, you have to try to forge a pathway through it, to help your loved one and all those who suffer like her.

It opens your heart. It creates a true vision. You cannot daily witness what I have seen, you cannot hear the pain-filled unjust stories that I have heard, nor been gutted by the pain of yet another death, down all these many years, without making a stand, fighting for the truth, challenging the status quo, the misrepresentation and mistreatment that allows the most ill to be completely abandoned and neglected, abused, left to die, horrendously. It is that serious.

The BJN award is about the shining of a light. Last night it illuminated serious neglect. Just being shortlisted has helped raise the profile of people with Severe ME, shining a much needed light upon their abandonment and their plight, greatly inspiring me to never stop fighting for the separation of ME and CFS and the creation of new biomedical care pathway."

Greg - Once again, WELL DONE! 

I'm sure I speak for the whole ME community, when I say that the work you are doing is making a difference. Thank you. 


Further Information:

List of Nurses Shortlisted for BJN Awards: Shortlist 2015

Sunday, 15 March 2015

Do you STOP soon enough?

Life is not linear, and so even within the constraints of living with ME there are moments when we want to DO things.

The difficulty, for me, is making myself rest immediately after doing that thing, whatever it may be.

You see doing "a thing" feels good!

Probably because the stimulus of the activity releases hormones like adrenalin, and these can mask warning symptoms and so delude my body  into believing that it is coping okay.

Sadly, it is my experience that I have to pull back, slow up, and start resting much sooner than I'd like.  And usually much sooner than my body starts giving me those warning signals!

This is one of the toughest things about having ME: if I don't stop soon enough, I risk making my condition worse long term, and that is just not fair on anyone....  least of all my family.

So I have to think beyond what I want in the moment... 

Take today, I went out and did some agility training with my dog.  (I use a mobility scooter, so it's not like I'm running around or anything mad like that.)  Anyway, I had a lovely hour with club friends and I came straight back in afterwards.

I had wanted to stay and out longer - wasn't I good?

Once back inside however, the excitement was hard to wind back down.  I usually feel "okay" at this point, so it is easy to just carry on doing a bit more of this or that.  The point is, I'm not "tired" yet, but if I carry on doing things until I AM tired, then I really have messed up!

So, I have to force myself to sit down, recline my chair, put my feet up and RELAX!

And in that moment, I feel like a small child told to go to bed while the party is still happening! 

So I'm wondering now about everyone else.... Do you STOP soon enough?
And how do you manage to curb those childish voices in your head that urge you to just push on a little longer??

I guess it is something with which we all struggle....  


PS I've written a bit about Pacing in these posts.   However it is one thing knowing what I should be doing, it is quite another managing to gracefully put it into practice!  ;)

Managing Illness through Pacing;
Pacing and Unpredictable Events Sept 2014
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014
Thoughts on Travel and ME Mar 2014
The Dilemmas of Exercise and M.E.  Dec 2013

Thursday, 12 March 2015

Greg Crowhurst - Short-listed for Nurse of the Year!

On the 20th March the British Journal of Nursing will announce the Winners of their 2015 Nursing Awards.  This year is especially exciting for the ME community because Greg Crowhurst of Stonebird has been shortlisted for Nurse of the Year!

I am sure the whole ME community will join with me in congratulating Greg on this amazing achievement, and in wishing him every success on the night!

At the end of last year I wrote a statement in support of Greg's application, and now seems a very appropriate time to share it.  (All images are Greg's)

This is what I said:

"Nursing for Greg has always been much more than just a career choice.  Only a few years after qualifying as an RN Greg left the structure and security of conventional practice to nurse his profoundly ill wife, Linda, at home.  Then, as now, medical help for severe myalgic encephalomyelitis (ME) was not readily available; with the condition often being mis-portrayed as a psychiatric problem.

Against this difficult backdrop, Greg not only kept abreast of the latest biomedical findings, but also wrote two books, and numerous articles, on caring for patients with the extreme neurological problems of Severe ME. 

Further, he took up the cause of publicizing the nature of Severe ME through his Stonebird website, Carer’s Fight blog, YouTube videos and podcasts. Through these outlets, he has helped to warn many new sufferers of the dangers of over exertion, and has given personal and hauntingly honest testimony about the decades of relentless suffering that Severe ME can cause.

I first encountered Greg in 2012 through his e-media campaign of Severe ME infographics. At the time, I was struggling to come to terms with my own diagnosis, and the severity of my illness was increasing at an alarming rate. 

Greg’s steady stream of material helped me to face up to the fact that I needed to change my “push on” approach, and so avoid making my condition worse.  I remain moderately affected, but I can thank Greg, at least in part, for the wake-up calls that made me act differently.

I continue to follow Greg’s campaigning, and his insightful writing always give me pause for thought.  It is strikingly obvious that Greg has dedicated his nursing career not only to Linda and the high maintenance needs of her care, but also to bettering the situation of ME sufferers everywhere."

Best of Luck on the Night Greg!  
Further Information:

List of Nurses Shortlisted for BJN Awards: Shortlist 2015
Greg's Website: Stonebird
Greg's YouTube Channel: Greg Crowhurst Videos
ME Publication: Crowhurst G (2005) Supporting people with severe myalgic encephalomyelitis.Nursing Standard. 19, 21, 38-43. Date of acceptance: September 28 2004.
Blog post I wrote last summer inspired by Greg and Linda: Living Death Disease

Some more images from Greg: 

Thank you Greg for all that you do!  xx

Edit to add link to post on the outcome: Congratulations Greg! BJN Nurse of Year: 3rd Place

Thursday, 5 March 2015

#InvisibleME Symposium - Belfast

Maeve Hully Chief Executive
of the Patient and Client Council
(All photos by Horace Reid)
This meeting took place in Riddel Hall, Belfast, on Monday 23rd February at 6.30pm. Details of the background to the meeting can be found HERE.

After registration and a buffet supper the meeting was opened by Maeve Hully, the Chief Executive of the Patient and Client Council. Maeve outlined some of the background to the meeting including a description of Martina Marks’ passionate plea to the Patient & Client Council. It was this plea that put ME and Fibromyalgia firmly on the PCC agenda.

Jim Wells MLA. Minister for Health 
Maeve then handed over to Jim Wells MLA, Northern Ireland's Minister for Health, Social Services and Public Safety.  Mr Wells described how the experience of watching a friend of his fall ill with ME, and in doing so change from being an active outgoing and busy individual to one confined mostly to her home, had influenced his view on the real and physical nature of the problem. He spoke about his involvement with the ME patient community and how he has in the past supported events run by the Newry and Mourne ME Fibromyalgia Support Group.  He recognised the need for improvements in patient care in N.Ireland.

Lorna Bryson
The first group of patients were then called to give their testimonies.

First up, Lorna Bryson gave her account of growing up as a teenager with ME and being told by doctors that she was making things up to avoid going to school!  She described the frustration of the brain fog that prevented her from reading or writing. She spoke without notes, straight from the heart, and the audience was visibly moved. Her final words, on being denied stronger pain-killers because of her young age, was harrowing but she carried it off with dignity and admirable strength.

Samantha Knox and her partner Paul
await their turn to speak. Eloise also
said "Hello"!
Next, young couple Samantha Knox and her partner Paul took turns tell their story. Samantha became ill with fibromyalgia after the birth of their daughter, and at first all her problems were put down to either baby blues or post natal depression.   Paul then spoke very movingly about how he couldn't understand how every day she seemed to be hurting in a different place, and that at first he had believed the doctors when they said it was all in Samantha's head! In fact he left her as a result of the stress of the situation. As these two spoke it became clear that they were now very much working together to cope with their own difficult situation and also in their demand for better recognition and treatments for fibromyalgia.

There can be no doubt that these illnesses change lives.
Me - Sally Burch - saying my bit.

Indeed that was the theme for my presentation.  I described my life both before and after the onset of ME and made a plea for better care.  I did a practice run at home have shared it on YouTube HERE in the hope that it might be useful to others.

Margaret Peacock spoke next, and described how there were two Margarets - the one before Fibro and the one afterwards.  She spoke about how she set up Fibromyalgia Support Northern Ireland to provide a sympathetic network of patient support meetings in the face of so little real care.

Last in this group of patients was to be Thomas McParland, Joan McParland’s husband and carer.  However on finding himself feeling too emotional to speak on the night, Fiona McLaughlin kindly stepped in to read his moving account of the seven years Joan spent in bed, and the harrowing times they had when professionals (that should have been helping them) declared that she was making everything up! Having not heard Joan’s full story, I found this testimony particularly emotional to hear.

Patient testimonies made a clear impact on the audience
At this point in the evening, I retired to a quiet alcove in the old part of Riddel Hall to lie down on a convenient couch and close my eyes.  My husband Tim, returned to the meeting and I've used his notes and the accounts of others to fill in details of the remainder of the night.

Iain Deboys Commissioning Officer
for the Health and Social Care Board
Next to speak was Iain Deboys Commissioning Officer for the Health and Social Care Board.  It was very clear that he had been moved by the patient testimonies, and that he appeared to agree that care in N.Ireland was decidedly lacking. He also said he recognised that there was a problem getting GPs to read and implement guidelines about these conditions. His solution was to suggest an expansion of a Condition Management Programme (CMP) that has been trialed by the Northern Trust.

He said that his team had visited the Lothian ME/CFS service in Scotland, and that he felt that this model should be used as the basis for the service provided in Northern Ireland, indeed the CMP was following that model. He spoke about a two hundred and fifty thousand pound investment for services as being "a start". He brought two speakers, Rosalind McLaughlin and Sinead King to describe the CMP, and they gave an account of the 12 session programme that offers lifestyle advice and management techniques for coping with illness.

Note: This is not a service model that could be supported by the charities in attendance at the meeting.  The fact that the Lothian service is clearly based on the theoretical psychiatric bio-psycho-social model of the illness makes it entirely inappropriate for patients with an organic disease.

My own view, no doubt echoed by the majority of patients, is that a programme like this might be somewhat useful, but only after patients have been properly assessed, diagnosed and treated by a medical expert, such as could be found at a specialist clinic led by a consultant physician who has a special interest in the physical nature of ME and Fibromyalgia.

These three speakers did not stay after their presentations and left immediately, without taking questions from the floor. However, I am at liberty to share with you that Joan McParland, Antoinette Christie and Jeannette Marley followed Mr Deboys out the door to put their questions to him in the corridor!  Joan had had the foresight to bring a sheet of typed out questions with her, which she handed to Mr Deboys, requesting that he make a written reply.  She also demanded that the Northern Trust claims that, “many people” have gone back to work after completing the condition management programme, be removed from online descriptions of the programme.  She told Mr Deboys that she had Freedom of Information replies that clearly demonstrated the fact that only ONE person had returned to full-time employment to date!  He agreed that the word “many” should be deleted.

After that excitement the next to speak was Dr Pamela Bell of the Pain Alliance of Northern Ireland. She spoke only briefly, cutting her presentation short to allow the meeting schedule to catch up. She emphasised the dilemma of misdiagnosis, but expressed hope for the future.  Her presentation slides (and those of other speakers) have now been made available on the Patient & Client Council page HERE.

Dr William Weir spoke in considerable detail about ME and this short summary does not do his presentation justice. He delved into some of the history of ME and outlined some of the current research findings that all point to an organic cause for ME.  He believes that a viral aetiology will eventually be demonstrated for the illness, and he also praised the work of Professor Mark VanNess. He further explained that the PACE trial was now regarded as a failed study.  He voiced the opinion that the Northern Trust pilot, based on the PACE trial methods, was not taking the right route. He said that for good practice, a clinic would be to need to be led by a consultant physician, and not led by either an occupational therapist nor a physiotherapist. He clearly stated that promoting the psychological approach for ME was counter-productive.

Keith Anderson
Specialist Nurse, Scotland
Keith Anderson the Specialist Nurse for ME, chronic fatigue and fibromyalgia from Scotland spoke next.  He described how his clinic was set up in 2004, and how it had built over the years by offering referred patients sympathetic support and guidance on symptom management. He talked about being able to visit the most ill at home, and also how he could help with DLA and ESA appeals. His presentation was so warmly received that some-one from the floor asked him to move to Northern Ireland!

The next group of patients were then called to the floor to give their testimonies.  There was some disappointment voiced that these patients would not be heard by key decision makers who had now left for the night.

Martina Marks
Martina Marks has both ME and Fibromyalgia. She explained how she first became ill in 1997 after a car accident. She didn't get a diagnosis until 2005 when she was told she had Fibromyalgia, but even then she got no support or advice and was left confused and isolated.  By 2009 her symptoms began to change and at one point she became housebound for a period of 3 months, yet her GP made her feel like she was wasting his time. It was only when she found the Newry and Mourne ME Fibromyalgia Support Group in 2011 that she finally felt some hope.  She finally consulted Dr Weir privately and was told that she also had ME. She feels that a specialist here in Northern Ireland is essential, because early diagnosis gives the best prognosis.

Anne Smyth told her story about 30 years of illness with ME.  She explained that she had been working as a social worker when she became ill that she spent 14 months bedbound - an agonising time when there was no care or intervention available to her.  Although she improved, she has had four major relapses and felt she has missed out on life.  She found the support offered by charity ME Support Northern Ireland invaluable because 30 years on there is still "a huge level of ignorance".

Antoinette Christie speaking with Catherine Burrell and
Anne Smyth listening after their own testimonies.
Catherine Burrell became ill with ME in 1999 when she was only 18 and although she recovered to some degree she then relapsed in 2005 and has now been moderate to severe for the past 10 years.  She explained how post exertional malaise causes her many distressing symptoms, and how she describes the fatigue as if a "vacuum was sucking out every ounce of energy".  Even social interactions leave her struggling and often bedbound for days afterwards.

Last to speak was Antoinette Christie the chair of ME Support Northern Ireland. She described the horror of having her youngest son fall to ME aged eleven.  At the time she was advised to keep him doing normal things, and so he continued to walk three miles to and from school each day, until one day he could do it no more!  From that day, he ended up bed bound for four and a half years!  Antoinette described how her son effectively returned to being a baby, and  how each morning she would look into his room hoping he had survived the night! She explained then the shock she experienced when reaching out for help only to find there was none!

Only a parent can understand this sort of terror she said! It was this that led her to form ME Support Northern Ireland, and to start fundraising for biomedical research into the illness. She concluded by pointing out the need for services for the most severely affected and also the need to educate schools and Welfare Officers about the severity of ME.

Heather Moorhead, NI Confederation
for Health and Social Care
Heather Moorhead then took the chair.  She said that because the evening had over run on time there would be no round-table discussions, but she acknowledged the harrowing stories and asked the audience for their priorities and ideas for the Patient and Client Council campaign.

A number of patients expressed disappointment at this and so Heather extended the meeting to accommodate some discussion.

A question was raised about how services are commissioned, and it was agreed that although Jim Wells would set policy that it was the Health and Social Care Board that made decisions - however there needed to be greater clarification of the commissioning process.

Another voice from the floor asked about how to better educate GPs and in particular whether they should have more of a duty to educate themselves. It was agreed that a campaign of awareness aimed at GPs was a priority.

Another patient claimed that Northern Ireland was currently the worst country in which to have ME, she spoke about current medical ignorance and made a plea for a consultant led service.  She said it would not do to say that Northern Ireland did not have anyone suitably qualified, because we should be sending professionals to America to learn from expert consultants already working in the field.

Margaret Peacock spoke of the need for more support for patients, and more awareness of where patients could go for help.

A question was asked about whether there was a legal requirement for including these illnesses in GP training programmes, to prevent another generation of medical professionals who haven't got a clue!

Then a patient asked about the HSCB remit to adhere to NICE guidelines for the provision of a consultant led service. Apparently Iain Deboys had promised this consultant led service in 2012, but had being claiming lack of finance as an excuse for poor services since 2008.  The speaker gave figures of spending in other areas of health and suggested that there was now a "discriminatory pattern of expenditure".

A couple of different people called for disciplinary action against doctors and professionals who showed skepticism of ME and Fibromyalgia as real illnesses.  This idea received applause.

A question was asked about the offer of two scholarships to train registrars at the Mt Sinai Clinic with Dr Enlander. Why was this generous offer not taken up?

Further discussion arose around the need for international speakers to help educate our professionals, and also the need for better communication strategies to encourage attendance at events.

Wrapping the evening up Heather gave thanks to the various speakers, and the patients who had shared their stories.  She explained that the next step would be a meeting of the Steering Group which included members of the participating charities, and that these issues would be looked at to find a way to take the initiative forwards.

Whilst I missed much of the action at the time, I hope that this give a reasonable record of events on the night.  Thanks to Tim Burch, Joan McParland, Horace Reid and Ian McIlroy for their assistance with this report.

Post giving some background on N.Irish situation.

The Northern Irish Situation for ME & Fibromyalgia

Could the recent #InvisibleME meeting held on 23rd February be a game changer for ME & Fibromyalgia treatments in Northern Ireland?

Certainly patient participants left last Monday night’s meeting with a new mood of optimism, and a real sense that our voices had been heard!

This post gives the background to the situation in N.Ireland.  An account of the meeting itself can be found here: InvisibleME Symposium.

Northern Ireland's ME and Fibromyalgia services are erratic at best and non-existent at worst.

A "Fatigue Clinic", that operated in the Belfast City Hospital, closed last year when its lead consultant Dr Welby Henry retired. Apparently, this clinic was not a formally commissioned service, but only run on a “special interest” basis.  Patients were thus left with no expert consultant to whom they could be referred by their own General Practice doctors (GP).

Currently this unhappy situation is compounded by the fact that doctors in Northern Ireland receive no formal training on ME and GP surveys have demonstrate that most GPs are not fully confident diagnosing or treating either condition. Indeed it seems misdiagnosis is common.  Some patients have described finding themselves in front of unbelieving doctors and being told to "pull themselves together" or being offered only psychiatric treatments for their physical problems.

Obviously this situation cannot go unchallenged!

The Patient and Client Council (PCC) works with patient groups to facilitate change.  Their attention was drawn to the problems ME and Fibromyalgia patient encounter by Martina Marks (Chair of Newry and Mourne ME Fibromyalgia Support Group) when she passionately presented the situation to a PCC meeting back in 2013.  As a result, the PCC came on board to help open the channels of communication between patients, charities, medical professionals, and key decision makers in the Health and Social Care Board (HSCB).

The wheels of change move slowly however, and impatient for progress the Newry & Mourne ME Fibromyalgia Support Group continued with their mission to educate medical professionals. Since forming four years ago, this group have brought a number of international front-line medical researchers to Northern Ireland.  Medical professionals who attend these conferences have been rewarded with Continuous Professional Development points from the Royal College of Physicians.

Joan McParland, the founder and co-ordinator, of the Newry and Mourne group leads this campaign with such determination and vigour that it would be easy to forget that she herself spent seven years bedbound with ME, and that she still struggles through debilitating illness daily!

Looking back, it seems now that an event in February 2014 marked a turning point. Professor Mark VanNess from the Workwell Foundation, California spoke to a packed house in Stormont, Belfast, about the problems ME patients face with exertion. He detailed how Graded Exercise Therapy (GET) can by physiologically harmful due to the broken aerobic pathways of ME patients. His message was well received.

At this Stormont meeting the Newry & Mourne Group also organised a silent protest, and made the request that Northern Ireland adopt the Canadian Consensus Guidelines for ME (known as CCC).

Subsequently an online petition: “Adopt CCC for ME in N.Ireland” was created. In just a couple of months this was signed by over 1200 people and in June 2014 the petition was presented to the Local Assembly by Local Assembly Minister Dominic Bradley along with a justification for the plea.

Note: Northern Ireland, although part of the United Kingdom of Great Britian and Northern Ireland (UK), has its own Local Assembly where decisions can be taken independently of the main UK government.  Thus it is legally possible for N.Ireland to adopt the CCC whilst the rest of the UK does not.

After much work behind the scenes a motion was tabled to the Speaker of the Local Assembly by Dominic Bradley MLA. The motion reads:
"That this House calls on the Minister of Health to adopt the Canadian Consensus Guidelines for the accurate diagnosis of ME/CFS, and further, to establish a regional specialist ME/CFS consultant post to lead a multidisciplinary team which will diagnose and treat patients with ME/CFS and the associated syndrome Fibromyalgia."

Following this motion being tabled, the Newry and Mourne Group have been informed that the matter will go up for parlimentary debate at a date still to be confirmed.

#InvisibleME meeting on 23rd February 2015

It was against this backdrop that the PCC renewed their efforts to find out what the charities had to say, and also to set up meetings with representatives of the Health and Social Care Board.  Establishing these meetings was not an easy task and there were a couple of false starts.

However eventually the #InvisibleME Symposium date was set and the charities given the go ahead to promote the event, by urging their GPs and MLAs to attend.

The four charities involved in promoting the event were:
Newry & Mourne ME Fibromyalgia Support Group
ME Support Northern Ireland
Fibromyalgia Support Northern Ireland and
ME FMS Awareness Northern Ireland

Three of these charities also put forward patient representatives to tell their stories about life with ME and/or Fibromyalgia.

The Newry & Mourne Support Group took the opportunity to prepare a new banner to illustrate the years lost to these debilitating illnesses. The banner, shown below, was prepared by Richard and Debbie Deboo in the weeks prior to the event, and it was displayed for the first time at the #InvisibleME symposium.

More details on the symposium itself  HERE.