Friday, 19 October 2018

Blog going into Hibernation

As many folk now know, I have recently been selected to sit on the Guideline Development Group for ”ME/CFS” as a lay member.

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.

I am still contactable via private messages, and I will still be around on social media, even if I say less out loud.

Onwards and Upwards

Sally K Burch

Tuesday, 10 July 2018

Yellow Card Confusion

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.

Click on image to enlarge
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.

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.

This is a problem. I wrote a blogpost  about the issue in February this year:
Yellow Cards & Psycho-Social Therapies

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!




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.

The Yellow Card website has a space to submit questions.  So I asked them the following:

There seems to be some confusion over the Yellow card system.  

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: 

"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."

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.  

"The Yellow Card Scheme includes a facility to report suspected adverse incidents associated with products used in psychological treatments."

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?


Today's Yellow Card Headings

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.

Thank you to both Jim Shannon MP and the Countess of Mar for following up on these issues.

Edit 11.30pm - 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! 

Links:

Question by Jim Shannon MP:
https://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2018-03-13/132337/

Questions by the Countess of Mar:
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/2018-06-20/HL8829/

Yellow Card website:
https://yellowcard.mhra.gov.uk/


Friday, 11 May 2018

Trust, in the context of ME



Trust issues run through every level of the ME experience.  

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.

To put things in context, I'll start with a little of my own story.

Before ME, I trusted that my body would heal. 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.  

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.

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.  "Three short brisk walks a day" she said.

I trusted this advice from my doctor.  I had no reason, then, to doubt.

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. 

My doubts started.  

So I went to the internet, and other patients told me a different story.  "Exercise can harm you!", "Don't do it!", and "Please be careful!" were the amongst the flood of messages that came my way.  

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: "Do only 60% of what you can do without symptoms" he said.  But I got no diagnosis!  With hindsight, I suspect this was so that I would not be pushed into Graded Exercise Therapy.

Did this consultant not trust other doctors to recognise my problems with exertion?

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 "No!" despite feeling almost desperate enough to try anything! 

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! "What harm can it do to try it?"  

No wonder ME is not taken seriously by the healthy world at large.    

Healthy people say things to us like: "We all feel more tired as we get older you know", or "Everyone has to push themselves to get things done", 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. 

So why are first-hand stories from the chronically ill not trusted?

This issue goes well beyond ME, and suffice to say that the media have cashed in on the "scrounger" narrative to try and imply, that all those who are long-term ill are actually just malingering. 

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.  

This is a tragedy in the making, and in my view everyone, including the currently-healthy, should be very distrustful of this label.

Back to ME now.  

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. 

Can we not even trust NICE to listen to patients? 

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. 

I have to wonder if NICE are swayed more by authority than by clear scientific evidence?  

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.  

Do NICE simply accept these assertions on trust?  Have they not investigated the flaws of the PACE Trial for themselves?  

Funding bodies also have a problem with patient trust.  

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. 

Do we really want yet more behavioural studies, whilst patients are dying in darkened rooms from severe ME? 


???

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: 

The days of blind trust in medical expertise are over.  

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.

My message to anyone with medical influence:

Do not ask us to trust that things will now be done right.  

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. 

Thank you.


***

PS I have intentionally not referenced this piece so that it can be read easily.  For more information I  recommend the writings of David Tuller on Virology Blog, and the patient discussions on the forum Science 4 ME.  


Friday, 2 March 2018

Supporting Dr Myhill's PACE Trial complaint to the GMC

I have copied below what I wrote to the General Medical Council in support of Dr Myhill's complaint regarding the PACE trial authors.  


Background:

Letters to the GMC:


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: 

Dr Myhill.co.uk: My Complaint to the GMC about the PACE authors

I have decided to make my complaint public, so that others might also be encouraged to write. 

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.

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.

Petition to support Dr Myhill's complaint:

There is also a petition that allows everyone, whether personally affected by the PACE Trial or not, to show their support.  

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.  

Change.org: I am showing my support for Dr Myhill's complaint to the GMC about the PACE authors.  



What I said:
(I said quite a bit in the end.  I think short letters could be just as effective.)

"DETAILS OF SPECIFIC HARM DONE TO ME

1. I have suffered damage because GET (Graded Exercise Therapy) has been widely promoted as therapy for ME.

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.  

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.  

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. 

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.

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. 

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.  

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”?  

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. 

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:

 https://www.slideshare.net/SallyBurch/heart-rate-monitoring-and-nice-guideline-for-me 

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.  

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.

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.  

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. 

 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.  

2. I have been turned down for benefits because the physical nature of my disease was not properly recognised.

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.)

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:

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. 

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. "


*******


I hope by sharing these details, I will give others confidence to also share their stories.  

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.  

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.

That needs to change.  It is time the truth came out. 

The PACE Trial has harmed me.  
The PACE Trial has harmed countless ME patients world over.
The PACE Trial authors need to be held to account NOW.

If you have been affected please write your own letter to the GMC

Then encourage everyone you know to sign, Dr Myhill's supporting petition.  

You might also like to contact your MP 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.  link to text   link to video 

And finally there is another related petition running asking that CBT & GET are immediately removed from the NICE guidelines  please also sign this petition: 

Tuesday, 27 February 2018

Yellow Cards & Psycho-Social Therapies

“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)?”

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.

“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.

Details of the Yellow card system are given here: https://yellowcard.mhra.gov.uk/

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.

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.

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.

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”.

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.

It is time for these psycho-social therapies to be be properly challenged.

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.

So please ask:

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)?

And:

What possible reason could there be for protecting these psycho-social therapies from scrutiny?

UPDATE: 10/3/18 Jim Shannon MP asked the question about the Yellow cards here:

Top of page 11, question no 98:
https://publications.parliament.uk/pa/cm/cmquestionbook/noq.pdf


Questions tabled on Monday 5 March 2018

"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)"

UPDATE - A further blog post 10/7/18  Yellow Card Confusion


Tuesday, 16 January 2018

NICE stakeholder meeting for CG53

Today I attended the stakeholder engagement meeting for the NICE CG53 guideline on "CFS/ME".

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).


--------------------------------------

NICE stakeholder meeting for CG53: 16th January 2018
Impressions from the meeting by Sally Burch


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.

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.  

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.

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.

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.

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.

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.


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.

Onwards and upwards? I hope so. 


With Mark Baker and Andy Hugh.

___________________________



NICE Stakeholder Engagement Meeting for CG53 16th January 2018
Points to consider from Sally Burch 

Patient Representative for Hope 4 ME & Fibro NI

1.    Remove all reference to “fatigue” from the name of Myalgic Encephalomyelitis.  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.   

2.    Remove CBT & GET from the CG53 guideline. 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.

3.    Advice given to the patient should be honest and transparent. 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.

4.    Patient Protection from HARM must be paramount:  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:
a.    Advising GPs to facilitate requested home visits 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.
b.    Advising Social Services that manifestations of ME could be mistakenly regarded as a safe-guarding issue. 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.
c.    Advising GPs to list the potential manifestations of ME 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.
d.    Advising hospital staff, including A&E departments, on the need to accommodate ME patients 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.
e.    Advising all professionals to consult with severe patients (or their spokespersons) on each patient’s specific needs 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.
f.     Advising all health professionals to carefully weigh the need for additional medical investigation or procedures 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.
g.    Advising GPs that “Rest and Recuperation” is appropriate advice for patients suspected of having ME. 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.
h.   Management advice on the use of Heart Rate monitors should be expanded to include warnings. 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.

5.    The make-up of the Guideline Development Committee 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:
a.    Psychiatry should play no part in creating the primary guideline for ME.  ME has a physiological aetiology.  The issue of counselling for secondary mental health issues should not require a psychiatrist to sit on the development group.
b.    Those who benefit financially, or reputationally, from the continuance of the current CBT/GET treatment paradigm should have no place on the development group.
c.    Patients and carers who have direct experience of Severe ME should be consulted on the care advice offered for patients with the extreme sensitivities of Severe ME.
d.    An individual with clear understanding of statistics and research methodology should be included in the group. 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.
e.    Those who produced the existing guideline should be excluded from the new development group, in order to ensure that a new approach can be properly considered.

6.    When the new guideline is issued, there should be extensive publicity through out the medical world highlighting the change of approach.  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.

NICE must leave no room for doubt about the physiological nature of ME.

Note: 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. 

[Edited 18th January to add the picture and this link to Linda Crowhurst's piece "An Honest Appraisal"]