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Submissions on Draft Scope for the NICE Guideline Review, 2018

Discussion in '2020 UK NICE ME/CFS Guideline' started by NelliePledge, Jul 27, 2018.

  1. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    Moderator note:
    This thread is for submissions made and submitted by various stakeholders on the draft scope for the NICE ME/CFS Guidelines Review.

    End of moderator note

    Action for ME have published their response to NICE


    The key points we highlighted in our response include:

    • Post-exertional malaise (PEM) should be listed as the hallmark symptom of M.E., and describe the impact of PEM. PEM is what makes M.E. unique compared to other conditions, and that explaining is vital for health professionals to understand the condition.
    • It should be highlighted that a wide-range of professionals should make use of this guideline. We recommended that NICE indicate that this guideline is relevant for benefits assessors, employers, schools, and social services, as all of these professionals require a good knowledge of M.E. to provide appropriate support for children and adults with the condition.
    • The main outcomes should include objective measures, such as a sustainable return to work or education, either part-time or full-time. Including these ensures that there has been a verifiable change in a person’s condition, and that assessing their capability is not solely based on perceptions.
    We have also submitted a response jointly with members of Forward M.E., a group of M.E. charities and campaigners convened by the Countess of Mar.
    Last edited by a moderator: Jul 30, 2018
  2. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    It looks pretty good, actually. Some things appear to have been taken onboard, and they're more anti-GET/CBT than they have been.
  3. Keela Too

    Keela Too Senior Member (Voting Rights)

  4. Sarah

    Sarah Senior Member (Voting Rights)

    I think Action for ME have misapprehended the meaning of outcome measures in assessing evidence as meaning the outcome measures that should be monitored by healthcare providers when assessing patients.
    Luther Blissett, JemPD and Inara like this.
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Very likely. I think I made that mistake at first. I am glad someone else was more on the ball.
  6. Keela Too

    Keela Too Senior Member (Voting Rights)

    That section was not very clear
  7. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    I did the same thing. Although the point stands for both cases. We don't want clinics claiming false improvement ratings.
  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Am just jotting down things from the #MEAction one that I am not sure about:
    p7 for concentration and memory: ADHD medication and other mild stimulants

    also have you made sure everything included complies with their checklist?eg insertion of tables It says they will return it, unread, if you don't.
    JaimeS, Inara and NelliePledge like this.
  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    1. My Localme one; https://drive.google.com/open?id=1cj3Xyd1Yao2Bq2F6lRRX3VJg-BH2X3hR

    2. VIRAS who are also on S4ME:

    I had forgotten about the 2015 CQC initiative!
    Wondering what they did with it?
    Will follow it up!

    Glad I mentioned CQC responsibility in my NICE submission...

    The Care Quality Commission (CQC) describes their campaign as follows:
    #InvisibleConditions campaign
    For one week in November, we’ll be highlighting five different ‘invisible’ conditions on our social media accounts:

    Monday – M.E. / Chronic Fatigue Syndrome
    Tuesday – EDS
    Wednesday – Hearing loss
    Thursday – Mental Health
    Friday – Arthritis
    We want to hear from you about your experiences of care. Join the conversation on Twitter using the #InvisibleConditions hashtag, or tell us about your care through our website.
    Inara, Luther Blissett and Keela Too like this.
  11. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Hello! They've confirmed receipt, and not noted any problems. We've been a bit flexible with format before and not had any issues.

    Re: meds for brain fog, I think my feeling on that was that we at least want the questions asked. It's not about coming to conclusions at this point, but looking for evidence.

    If the questions aren't asked, then there's no chance of them getting in or getting refuted. It's important to at least look at the major symptoms, the treatments some clinicians use for each, and then the evidence for those options, even if the guideline eventually decides 'don't use these'.

    For example, I know lots of clinics experiment with antidepressants, antipsychotics and stimulants in their ME patients even though it's not in the NICE guidelines. I don't think that kind of experimentation is usually in our best interests, since the drugs may simply placate patients or make them more docile without addressing underlying problems.

    There's some minor evidence about modafinil that we want the GDG to look at, as well as some negative antidepressant studies. I think stimulant (ADHD drugs) studies also show a negative response, and that's worth including.
    Inara, NelliePledge, JaimeS and 2 others like this.
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    So have I misunderstood, as it seems to suggest ADHD drugs are potential treatments?

    "Many of these symptoms can be addressed through commonly available treatments
    that are relatively cheap to deliver and can improve quality of life. There are
    interventions suitable for common symptoms:

    ●Post-exertional malaise: pacing; breaking large activities into smaller ones with
    rest in between
    ●Orthostatic intolerance: drugs that increase blood volume; beta-blockers
    ●Pain: bodywork; pain medications
    ●Sleep: prescription or over-the-counter sleep medication
    ●Concentration and memory: ADHD medication and other mild stimulants"

    (also what is 'bodywork'?)
  13. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Maybe @Jenny TipsforME and @Nathalie Wright can help? I didn't write that section.

    ETA: I don't know about body work (massage, maybe?) and I have no strong feelings either way re: stimulants.
    MEMarge and Inara like this.
  14. Cinders66

    Cinders66 Senior Member (Voting Rights)

    AFAIC the jury is out onstimulants for concentration and memory, I've seen mixed remviews in the mild - still at school work - and certainly in the severe where these problems are more extreme, I don't think they're the answer at all as they prevent rest, no stimulant allows for ten minutes brain activity, an hours rest, once in you're "on". . My experience with Ritalin and modafonil was bad. The mild, some find them help with clarity and focus in their daily lives but other s say they just give illusion of false energy with inevitable crashes. I'm not sure enough context is given withOut trivialising the brain issues as fixable with drugs. Saying that I do think they should be available for the right type of patient.
    Inara and adambeyoncelowe like this.
  15. Adrian

    Adrian Administrator Staff Member


    Attached Files:

    Inara, Sly Saint, Skycloud and 6 others like this.
  16. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

  17. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    I see the thread has been posted on S4ME Facebook and my Avatar is rather prominent on the post. I hope if NICE are monitoring Facebook they’re not scared by my evil minion. I picked it for the colour and wild hair not the teeth :laugh:
    Graham, mango, Barry and 8 others like this.
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

    Hutan, Sly Saint, Inara and 2 others like this.
  19. Eagles

    Eagles Senior Member (Voting Rights)

    (Thread merged)

    ME Association: NICE ME/CFS Clinical Guideline Review: ME Association Submission re: Scoping Report | 02 August 2018


    As part of the continuing review of the current NICE guideline for ME/CFS, the ME Association as a stakeholder in the process responded last week to the draft scope report.

    This submission is set out for you to read below and the original is available as a download.

    We are very grateful to everyone who took the time to share their own opinions with us...
    Last edited by a moderator: Aug 3, 2018
  20. Andy

    Andy Committee Member (& Outreach when energy allows)

    Hampshire, UK
    Seems pretty good.

    This stuck out to me though (my bold)
    No mention of the potential to develop new symptoms for the duration of PEM.

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