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  3. Guest, NICE have published their draft guideline for ME/CFS, click here to read about it.
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NICE ME/CFS guideline - draft published for consultation - 10th November 2020

Discussion in 'Information for NICE guidelines' started by Science For ME, Nov 9, 2020.

  1. Science For ME

    Science For ME Forum Announcements

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  2. Science For ME

    Science For ME Forum Announcements

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    This post will link threads for members to discuss sections of the guideline in preparation for the S4ME submission.

    Section 1.1 Principles of care for people with ME/CFS
    pages 4-8


    Sections 1.2 Suspecting ME/CFS; 1.3 Advice for people with suspected ME/CFS; 1.4 Diagnosis
    pages 8-11

    Section 1.5 Assessment and care planning by a specialist ME/CFS team

    pages 11-13

    Section 1.6 Information and support

    pages 13-16

    Section 1.7 Safeguarding

    page 16

    Section 1.8 Access to Care

    pages 17-21

    Section 1.9 Supporting people with ME/CFS in work, education and training

    pages 21-22

    Section 1.10 Multidisciplinary care

    pages 22-4

    Section 1.11 Managing ME/CFS Part 1 - Energy Mgmt; Physical Mtce; Physical Activity

    Section 1.11 Managing ME/CFS Part 2 - Symptom Management

    Section 1.11 Managing ME/CFS Part 3 - Psychological support


    pages 24 - 36

    Section 1.12 Managing coexisting conditions

    pages 36-7

    Section 1.13 Managing flares and relapses

    pages 37-9

    Section 1.14 Review

    page 39

    Section 1.15 Training for health and social care professionals

    page 40

    Terms used in this guideline

    pages 41-5

    Recommendations for research

    pages 45-7

    Rationale and Impact
    pages 47 - 71

    Evidence reviews and supporting documentation
    Separate documents - see links in above post.

    Apologies - this section was omitted when the threads were created:
    Context
    pages 71-2

    A reminder to anyone interested in adding comments to these discussion threads - the threads will be closed this Friday (27th November). After that you will have to wait until the draft submission is ready a couple of weeks later to have your final say. For details, see this announcement.
    https://www.s4me.info/threads/nice-draft-guideline-submission.17855/
     
    Last edited: Nov 25, 2020
  3. Science For ME

    Science For ME Forum Announcements

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    Trish here. I have been drafting the summary for the weekly News in Brief and thought this list of links to documents and responses so far might be useful. They have all been posted on this thread:

    Draft Guideline here
    NICE consultation page (including links to Evidence Reviews and Supporting Documentation and how to respond) here
    Statement from NICE here

    Professor Jonathan Edwards and Dr Nina Muirhead Expert Testimony here
    Summary of the guideline by Michiel Tack here

    ME Association here MEActionUK here Invest in ME here
    Action for ME article here survey here

    Trial by Error by David Tuller here The Science Bit by Brian Hughes here
    Centre for Welfare Reform here Science Media Centre here

    The Guardian here The Times linked here The Telegraph here
    Medscape here British Medical Journal here The Pharmaceutical Journal here
    _______________

    Added since 14th November:
    BMJ rapid responses here (including from @Andy and @Robert 1973)

    Last updated 16th Nov.

    For more, see the latest week's News in Brief.
     
    Last edited by a moderator: Nov 24, 2020
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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  5. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Location:
    Earth, in a fractal universe

     
  6. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Location:
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    Also

     
    sebaaa, Barry, rvallee and 25 others like this.
  7. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    First is A4ME

    Second is MEAction

    I have not read the docs and must sleep, but looks like seeds of good news.

    Devil will be in the detail
     
  8. Esther12

    Esther12 Senior Member (Voting Rights)

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  9. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    From

    https://www.sciencemediacentre.org/...deline-on-diagnosis-and-management-of-me-cfs/

    Prof Peter White,
    Emeritus Professor of Psychological Medicine, Queen Mary University of London, said:

    Genuine thanks to everyone who fought to make this happen.

    Usually not the gloating type, but ahhhhh feels so good to see Peter White cry as he watches his legacy go up in smoke.
     
    Last edited: Nov 10, 2020
  10. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I’m near tears with relief and happiness. I can’t read it all yet but just read this part of severe ME (sorry it’s coming up strange when I copy and paste):

    “Be aware that people with severe or very severe ME/CFS may experience some of the following symptoms that significantly affect their emotional wellbeing, communication, mobility and ability to interact with others and care for themselves:

    • severe and constant pain, which can have muscular, arthralgic or neuropathic features
    • hypersensitivity to light, noise, touch, movement, temperature extremes and smells
    • extreme weakness, with severely reduced movement
    • reduced ability or inability to speak or swallow
    • cognitive difficulties, causing a limited ability to communicate and take
    in written or verbal communication
    • sleep disturbance such as unrefreshing sleep, hypersomnia, altered
    sleep pattern
    • gastrointestinal difficulties such as nausea, incontinence, constipation
    and bloating
    • neurological symptoms such as double vision and other visual
    disorders, dizziness
    • postural orthostatic tachycardia syndrome (POTS) and postural
    hypotension.
    Recognise that symptoms of severe or very severe ME/CFS may mean that people:
    DRAFT FOR CONSULTATION
    1 • 2
    3
    4 • 5
    discussing and regularly reviewing with the child or young person how they want to be involved in decisions about their care (taking into account that their parents or carers may act as advocate)
    taking into account that children and young people may find it difficult to describe their symptoms and may need their parents or carers to help them.
    6
    7 Awareness of severe or very severe ME/CFS

    need a low-stimulus environment, for example a dark quiet room with interaction at a level of their choice (this may be little or no social interaction)

    are housebound or bed-bound and may need support with all activities of daily living
    need careful physical contact when supported with activities of daily living, taking into account possible sensitivity to touch
    need aids such as wheelchairs
    cannot communicate without support and may need someone else they have chosen to be their advocate and communicate for them
    are unable to eat and digest food easily and may need support with hydration and nutrition (see the section on dietary management and strategies)
    have problems accessing information, for example because of difficulty with screens, noise and light sensitivity, headaches affecting their ability to read, or brain fog affecting their concentration.

    Personal care and support for people with severe or very severe ME/CFS should be carried out by health and social care practitioners who are:
    • known to the person and their family members or carers wherever possible
    • aware of the person’s needs.
    Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks to the person (for example, worsening their symptoms). For people with very severe ME/CFS, think about discussing this with the person’s family or carer on their behalf.”

    Thank you so much to everyone who was involved in this. It’s got everything that I desperately was fighting for when trying to access hospital care, but couldn’t get. It explains so many symptoms of severe ME that are disbelieved, and the accommodations that I need.

    thank you :heart:
     
  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    I wouldn't jump to triumphalism. Wessely's comments at the SMC seem to indicate that he thinks that little need change. A lot depends on the details and how those details are likely to be implemented by those running services. Looks as if there's a lot to read!
     
  12. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Their entire strategy has always been lying through their teeth to save their own careers. It's all they care about. They already pretended that they never told patients to push themselves in the PACE trial, when that literally contradicts the entire point of CBT and GET in the trial (as well as having the pacing group as a sort pseudo control grp) . Whatever direction the wind blows they will follow, if it benefits their careers, reputation or financial situation.

    White just couldn't hide his bitterness and disdain like the rest of them, he was simply too proud and in some weird way I respect him for it.
     
    Last edited: Nov 10, 2020
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I wonder whether the ME Association or the other charities got anything in advance as clearly the five experts quoted by the Science Media Centre did.
    This was posted at 8:33 PM:
     
  14. Daisybell

    Daisybell Moderator Staff Member

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    Wow! Ive read as much as I can in one sitting and I’m delighted.... it goes further than I had dared to hope.
     
  15. Hutan

    Hutan Moderator Staff Member

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    It is great, but there will be stuff for us to comment on too. e.g.

    i.e. CBT being mentioned (albeit as part of a list of possible management actions), when supportive counselling is not.
     
    Last edited: Nov 10, 2020
  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    OT: I was just mentioning a premature victory lap from the 90s, where over-excitement and over-interpretation about a draft DWP decision to class ME as a neurological condition for the sake of welfare claims led to a concerted push-back by Wessely and others, and then decades of problems. You get a sense of this from page 21 (then in reverse order back to page 1) here: https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

    Maybe I've just been burnt too many times, but I'm drawn to staying cautious about things.
     
  17. Simone

    Simone Senior Member (Voting Rights)

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    Seems like they’re jumping the gun. GET isn’t scrapped. The guidelines say that unstructured or general exercise programs, or exercise programs based on fixed increments aren’t recommended, and they use GET as an example of an exercise therapy which uses fixed increments. So programs with fixed increments are bad, but tailored exercise (which most GET programs are anyway) is fine.

    The description of exercise therapy sounds like any standard GET program: establish a baseline and then slowly increase exercise, but they do mention the energy envelope and the need to stay within it. And they say that patients should be informed of the possible risks and benefits of exercise, without explaining what they are, and say that some people get worse, some find no benefit and some do benefit from exercise.

    The bit about managing relapses seems to suggest that relapses are to be expected and aren’t a reason to stop the treatment. At least the old trope about symptom exacerbation being a normal part of reconditioning is gone, but there’s no mention of stopping treatment if the patient gets worse either.

    Given they say that exercise should not be recommended based on deconditioning, it’s unclear what the recommendation for exercise is based on? What rationale do the guidelines offer for why people whose core symptom is exertion intolerance should be undertaking exercise as a therapy, now that deconditioning has been discredited?
     
    Roy S, oldtimer, Wits_End and 32 others like this.
  18. Marky

    Marky Senior Member (Voting Rights)

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    This is an historic draft. Its really really good for ME-patients. Buzzing.
     
  19. Hutan

    Hutan Moderator Staff Member

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    Terrific content about providing practical assistance:
    There's more about assistance for carers, social care needs assessments, and content on safeguards that may stop allegations of parental abuse:
     
  20. Marky

    Marky Senior Member (Voting Rights)

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    The committee on why they wont support GET
     

    Attached Files:

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