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NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Discussion in '2020 UK NICE ME/CFS Guideline' started by Andy, Oct 16, 2018.

  1. Amw66

    Amw66 Senior Member (Voting Rights)

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    6,261
    thanks Sarah I will have a look at this.
    Given that some are serotinergic the lack of side effects being highlighted is a bit worrying. Amitriptyline also has liver impacts.
     
  2. Sarah

    Sarah Senior Member (Voting Rights)

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    1,494
    Some notes on the chapter authored by Jennifer McIntosh in the Manual of Dietetic practice 5th ed:

    7.6.5 Chronic Fatigue Syndrome / Myalgic Encephalomyelitis under s.7.6 Neurological disorders.

    WHO classes as neurological disorder.
    Prevalence: 0.2-0.4% (DoH 2002, White et al 2007)
    Four times more common in women than men.
    Most common age at onset is 40-50 years.
    Less common in children, but children can devELOP CFS/ME, particularly during adolescence (14-15yrs).
    In the UK, NICE (2007) diagnostic criteria are used.

    It provides the NICE diagnostic criteria but misses off some of the optional 'and one or more of the following symptoms', lists NICE's 'red flag' symptoms to be investigated before a diagnosis is made, and gives descriptions for the classification as mild, moderate and severe.

    Prognosis:

    It goes on to state that a substantial no. have a fluctuating course. Significant minority become severely and perhaps permanently disabled. (Cairns * Hotopf, 2005, DOH 2002).

    Nutrition problems:
    - Weight gain due to reduced activity, increased eating to boost energy, comfort eating, meds.
    - Weight loss more common in children and those w/ nausea.
    - IBS: 60-70% of CFS/ME patients (Rao et al 2009) report IBS symptoms.
    - Nausea: some evidence of delayed gastric emptying
    - Food intolerances.
    - Osteoporosis due to lack of sunlight exposure and weight-bearing.
    - Reactive hypoglycaemia

    There are brief sections on nutritional assessment, clinical assessment and dietary assessment, including a list of the blood tests recommended by NICE, BMI and dietary and weight histories.

    Management:

    Pharmacological interventions for symptom control for sleep, mood disturbance, IBS, menstrual probs. Acknowledges some patients report sensitivity to medications, though there is no evidence for this.

    Most common prescriptions are for antidepressants and melatonin. SSRIs may be prescribed for anxiety. Side effects can include weight gain, food cravings and GI effects.

    There is also a section on pacing which describes it as energy management which attempts to maximise activity while avoiding setbacks caused by overexertion. It states the evidence to support pacing is equivocal.

    Also mentions activity management, sleep management, relaxation, relapse and setback advice and mindfulness cognitive therapy as other interventions that patients have reported finding helpful.

    Section on nutritional management refers to eating a balanced diet, small regular meals, adequate fluid intake, low GI foods and other practical advice. There are small dedicated sections on weight gain and reduction, nausea, food allergies and intolerances, bowel symptoms, supplements and CAM.
     
    Last edited: Mar 12, 2019
    MEMarge, Barry, Sly Saint and 8 others like this.
  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    1,522
    Hi A and S and young patient on GDC. Wondered if the committee is now complete as I believe the GDC met on the 29th March?
    I do hope the vibes were encouraging but I am not holding my breath........
     
  4. saranbonser

    saranbonser Established Member (Voting Rights)

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    27
    We still don't have a community paediatric nurse but meetings are going ahead.
     
  5. Tilly

    Tilly Senior Member (Voting Rights)

    Messages:
    350
    I feel sad reading this back through has BACME won? I fear so. Unless and effort is targeted and CBT and GET taken down we will loose a lot more children's childhoods and a lot more lives that can not bare the pain of ME that lasts a lifetime.
     
  6. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    If the published guideline is as hoped, then this will have major implications for health insurers. Where are they going to turn to for their ME/CFS expert advice, now their pet ones will no longer have credibility? How are they going to wriggle out of insurance payments if they can't accuse patients of not trying hard enough with bogus treatments? So long as NICE have not bottled out, the ramifications be ... interesting.
     
  7. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,234
    This seems easy to answer: if ME/CFS is no longer a diagnosis that is convenient for them, they will try to replace it with one that is. This is true also for rehab services.
     
    Missense, EzzieD, Forestvon and 11 others like this.
  8. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    I can't remember now - does the guideline not include diagnostic criteria also?
     
    alktipping and ladycatlover like this.
  9. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    That's not an obstacle. They will argue that doctors should prefer the FND diagnosis (or whatever other label they decide is convenient) because it offers a constructive way forward instead of succumbing to therapeutic nihilism. Or some other superficially valid argument.
     
    Midnattsol, EzzieD, Sean and 9 others like this.
  10. Barry

    Barry Senior Member (Voting Rights)

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    But surely a final diagnosis is not down to the GP?
     
    alktipping and ladycatlover like this.
  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    10,280
    Probably not. If there is an "expert" or clinic in the region then the GP would probably refer on for formal diagnosis.

    If the GP hasn't already referred you on or the referral might take too long then your employer might request that you see a specialist of their choice. I say request but you may find that the terms of your employment contract mean you can't refuse.

    The problem with cr@p like FND and MUS and PPS and all that BS is you can probably shoe horn almost anyone into them, certainly an ME patient.

    If you happened to be an "expert" with ties to insurers with a preferred diagnosis or with financial links to rehab clinics that work with people with a preferred diagnosis & no biomarker.....
     
  12. Simbindi

    Simbindi Senior Member (Voting Rights)

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    Location:
    Somerset, England
    In light of the recent 'protest' resignations from the committee from 3 professional members with known conflicts of interests and/or clear ideological attachments in response to a finalised guideline that has objectively and thoroughly reviewed the evidence, I wonder if NICE will learn anything from this occurrence, and whether or not this will inform committee make up on other reviews?
     
    Hutan, Michelle, ladycatlover and 4 others like this.
  13. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Regarding the references to Professor Chris Burton, this blast from the past in 2004 makes for a good read, and very telling, predated NICE 2007!
    https://www.bmj.com/rapid-response/2011/10/30/re-gps-are-powerless-without-better-models

    Rapid response to:

    General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study
    BMJ 2004; 328 doi: https://doi.org/10.1136/bmj.38078.503819.EE (Published 03 June 2004) Cite this as: BMJ 2004;328:1354
     
    Michelle likes this.
  14. Simbindi

    Simbindi Senior Member (Voting Rights)

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    Location:
    Somerset, England
    I'm wondering what impact the experience of being on the committee has had on those BPS/MUS members who PWME were concerned about at the time they were selected, but have actually signed off on the final guidelines and not resigned.
     
    lycaena, Hutan, Kirsten and 4 others like this.
  15. Hutan

    Hutan Moderator Staff Member

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    I was just looking at this thread for an old moderation report and saw @Simbindi's post. @Keela Too; @saranbonser; @adambeyoncelowe - can you say anything about whether other committee members changed their views about anything? Did any of you change your views as a result of looking at the evidence, or talking with others on the committee? Did anything surprise you?
     
    Lilas, Ariel, Binkie4 and 8 others like this.
  16. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I'm not sure if anyone changed their views. Rather, I think people thought certain things were untenable with the current evidence base.

    Then again, there was broad on agreement on most things. Everyone genuinely seemed to want to help patients.
     
    Lilas, EzzieD, Skycloud and 12 others like this.
  17. Trish

    Trish Moderator Staff Member

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    UK
    I don't doubt that everyone wanted to help patients. And I can imagine that, knowing it was necessary to reach a consensus, committee members probably did their best to remain polite and to listen to each other and reach agreement.

    However, that's very different from agreeing on everything. It may not have been spelled out in meetings, in order to retain harmony, but I can't imagine everyone on the committee was entirely happy with some of the things that ended up in the guideline. Because of the composition of the committee, compromises were necessary in order to reach agreement.

    For example, our S4ME guideline group have highlighted in our commentaries several parts of the guideline that we are very concerned about, such as the sections on CBT as the modality to help with activity and symptom management, and the sections on physical activity and exercise programs, and on sleep hygiene. None of which is evidence based, and all of which have significant potential for ongoing harm in the hands of current therapists who may hold on to their current views and make inadequate tweaks to what they say and do.

    I don't blame the patient reps at all for these problematic areas being in the guideline. I'm sure without your presence and that of others with a good understanding of ME, these sections would be a whole lot worse. For example, the section on physical activity and exercise programs is to some extent saved by the caveat that patients should stay within their energy limits.

    But if the selection of the guideline committee had not been an attempt to 'balance' between users/ supporters of the old guard BPS approach and those who recognised the lack of evidence of efficacy and the harms of that approach - if the committee had instead consisted of people who understand science and evidence, and who listened to patients' experiences - then there would have been no need for those sorts of compromises.
     
    Jan, livinglighter, Ash and 13 others like this.
  18. Barry

    Barry Senior Member (Voting Rights)

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    Agree with all you say in your post Trish. But if NICE had not gone for the 'balance' they did, it is very possible that attempts to get the new guideline pulled completely might have succeeded. As it was, it looks like NICE did everything they could to pre-empt any attempt for the BPS brigade to argue there was bias against them. Given we now know how hair-trigger some of the behind-the-scenes machinations got, it is possible that only failed because there was no chink of bias they could try to prise open and exploit.

    Any new guideline was always going to be a compromise, and we could so easily have been looking at something much worse. Or if some had had their way, still stuck with the old guideline.
     
    livinglighter, Lilas, Hutan and 6 others like this.
  19. Trish

    Trish Moderator Staff Member

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    I'm not disagreeing with you Barry, given the politics around this. I'm just hoping next time around there will be no necessity for compromise. I don't suppose I'll live long enough to see it, but I do see hope for the future, and am grateful for this first step.
     
    Jan, livinglighter, Ash and 9 others like this.
  20. Sean

    Sean Moderator Staff Member

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    Location:
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    I accept the need for compromise in order to get the worst stuff out of the guidelines, and generally get things moving in the right direction.

    But I don't like it one bit, particularly given how skewed the game was to start with.

    We still have a long way to go.
     

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