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).


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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.

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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"]

21 comments:

  1. Sally thank you so much for being there! It sounds positive so far! H.O

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    1. Let's hope the process continues in this way. :)

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  2. Thank you so much for doing this, Sally. It's extremely helpful. It must have cost you an enormous amount of effort to write this up after travelling and then sitting through the meeting. I really appreciate it.

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    1. The "wired" phase after an event like this can be remarkably useful. LOL

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    2. I am feeling wired just from reading it. Enormous thanks and well done.

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  3. Thank you, Sally. Excellent work. I hope you will consider applying to be a patient representative on the Guidelines.

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    1. I am giving it some consideration. Thank you for your voice of support.

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  4. Thanks so much for this appraisal Sally-you have saved me an awful lot of work! I will write up my thoughts from the meeting later. One thing which was not mentioned but might be important was the issue of "dual diagnosis, though"co morbidity" was. I have just listened to a Radio 4 piece on dual diagnosis. The issue of POTs OI Lyme celiac, Hyper-mobility Syndrome, Connective Tissue Disease , thyroid, adrenal insufficiency, head/neck trauma- possibly affecting the pituitary was featured in our discussion.

    It now strikes me that it would be useful to include dual diagnosis os people can be referred, seek help with any of these specific conditions.

    ATM, it's often dismissed for further investigation or support being labelled as" just part of ME".
    Comments would be welcome.

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    1. Interestingly this came up at our table. The thought was that for research it was useful to exclude co-morbid conditions, but that for diagnosis there should be no problem with giving more than one diagnosis. After all having ME doesn't mean you won't also be affected by something else and visa versa.

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  5. Thank you so much Sally for the effort you have put into this work, I have a lot of tears reading it,and trying to continue is difficult. I was diagnosed with Post Viral Fatigue Syndrome almost 25 years ago. The Immunology clinic I was referred to, at a large hospital, was helping me. Dr Williams was the brilliant M.E. consultant, but he was ill himself & he died, the clinic was closed down. I saw a Neurologist at about the same time, but was just left to get on with it, after the clinic closed. I am on my own & life had been very difficult, but I've always believed that eventually we would overcome. Your above sentence, "Having ME doesn't mean you won't also be affected by something else & visa versa" seems to escape some of the supposedly most intelligent people involved, yet Dr Anne McIntyre mentions this in her book written around 20 years ago. Thank you again

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    1. Thank you for your voice of support. There is so much good material that seems to have been lost during the years in which the psycho-social premise took hold. Let's hope that time is now ending.

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  6. Thank you Sally for both attending this meeting and also giving us a good idea of how it went. Much appreciated. Best wishes from Liverpool.

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    1. :) Your support is appreciated Tanya.

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  8. Thank you so much for sharing your account of the meeting! This sounds much more promising than I thought it would, but I'm trying not to get my hopes up too much.

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  9. Thank you so much Sally for all your efforts. This looks very positive and hopeful.

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    1. I hope things are changing, but only time will tell. xx

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  10. Hi Sally, wonderful article, thank you so much for all you do. You mention there being potential for 4 patient representatives on this committee - something I’d love to get involved in. Any ideas how the application process would work? Thanks!

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    1. I understand it will be advertised on the NICE website on the 21st of June. I believe it will also be shared by email to stakeholder groups, and via Twitter @NICEgetinvolved

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