1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for 'CFS'.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 4th November 2024 is here.
    Dismiss Notice
  3. Welcome! Read the Core Purpose and Values of our forum.
    Dismiss Notice

NICE ME/CFS guideline - draft published for consultation - 10th November 2020

Discussion in '2020 UK NICE ME/CFS Guideline' started by Science For ME, Nov 9, 2020.

Tags:
Thread Status:
Not open for further replies.
Page 2 of 62
  1. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,374
    Location:
    Aotearoa New Zealand
    I agree that there's still scope for GET-like therapies to be promoted as meeting the guideline. But the guideline does stress that energy should be allocated to activities of daily living before exercise, and there's a good focus on physical maintenance rather than exercise. I don't think that we could have expected much more re GET.

    In contrast to some of the ambiguities around exercise, the last line can be celebrated unequivocally:

    :thumbup:
     
    Hutan, Nov 10, 2020
    #21
    Subtropical Island, janice, oldtimer and 43 others like this.
  2. Marky

    Marky Senior Member (Voting Rights)

    Messages:
    590
    Location:
    Norway
    The draft is very clear on GET and CBT not being curative treatments for ME, and that they never shud be pushed on the patient past their energy envelopes :)
     
    Marky, Nov 10, 2020
    #22
    Dolphin, lycaena, alktipping and 26 others like this.
  3. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Messages:
    3,860
    Location:
    Australia
    I am unfamiliar with the process from draft to publication. What is the likelihood of all the good stuff being revoked?
     
    Snow Leopard, Nov 10, 2020
    #23
    Subtropical Island, SedulousSloth, alktipping and 21 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,837
    Location:
    UK West Midlands
    Great progress

    every stage is a fresh battle

    once the guidelines are in place the next battle will be about how the organisations within the NHS actually deliver care for people with ME based on the guidelines as set out by the Committee. There will be attempts to do a facelift over existing ‘specialist’ provision (where there is any) and claim the new guidelines are met.

    Education of GPS and anyone in a role intended to be a specialist in supporting people with ME is going to be critical in this. Who controls the manual controls the implementation.
     
    NelliePledge, Nov 10, 2020
    #24
    Forestvon, SedulousSloth, Dolphin and 30 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,837
    Location:
    UK West Midlands
    Stick that in your business model Parker
     
    NelliePledge, Nov 10, 2020
    #25
    hinterland, alktipping, sebaaa and 19 others like this.
  6. Jim001

    Jim001 Established Member (Voting Rights)

    Messages:
    53
    I did note while reading (skimming) the 'expert reactions' in the Science Media Centre piece that they seemed kind of resigned about the language of the draft. As though they had gotten as much as they were gonna get.
     
    Jim001, Nov 10, 2020
    #26
    alktipping, sebaaa, Nellie and 14 others like this.
  7. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,374
    Location:
    Aotearoa New Zealand
    They've lost the ME/CFS battle, but there's still the MUS war. In fact it's not even a war- it's more like a largely uncontested MUS occupation with the occasional bit of guerrilla 'sniping'.

    And then there are the new territories of post-Covid-19 to expand into.
    (edit to remove a mixed metaphor).
     
    Last edited: Apr 19, 2023
    Hutan, Nov 10, 2020
    #27
    oldtimer, SedulousSloth, alktipping and 25 others like this.
  8. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    Something obvious that I've not thought about til just now - anyone planning to help submit a comment could think about pulling out sections to praise and say are important, as well as bits that need improvement. If the Royal Colleges of Don't Challenge Us, We Know Best are going to try to change the good bits then showing support for them would probably be useful.
     
    Esther12, Nov 10, 2020
    #28
    Subtropical Island, oldtimer, SedulousSloth and 35 others like this.
  9. Fizzlou

    Fizzlou Senior Member (Voting Rights)

    Messages:
    191
    Location:
    Cheshire
    Context P71 Draft

    “11 are not clearly defined. There is little pathological evidence of brain inflammation”

    Is there a study due out from Watanbe this year?

    What a lot of reading and wondering how this will translate into a change of care in real terms. But my first reaction is it’s a lot better and bigger than I had expected. Such a big effort from our advocates. Thank you.
     
    Fizzlou, Nov 10, 2020
    #29
    janice, SedulousSloth, Dolphin and 19 others like this.
  10. Sean

    Sean Moderator Staff Member

    Messages:
    8,064
    Location:
    Australia
    Initial impressions & thoughts:

    Page 9, 1.2.5
    Do not delay making a provisional diagnosis of ME/CFS.

    Very important. The sooner a patient can start managing their activity profile appropriately, the greater their chances of a better long-term outcome (though not necessarily a full recovery, of course).

    ----------

    "The committee reinforced there is no therapy based on physical activity or exercise that is effective as a treatment or cure for ME/CFS."

    :thumbup:

    ----------

    the impact of symptoms on psychosocial wellbeing

    Finally, they get the causal direction right. Only took them 30 years. But they got there.

    ----------

    A well deserved slap in the face for Crawley & co.

    ----------

    Page 18, 1.8.3
    Be aware that people with ME/CFS are unlikely to be seen at their worst...

    Page 20, 1.8.11
    For people with moderate ME/CFS or severe or very severe ME/CFS, consider providing or recommending aids and adaptations (such as a wheelchair, blue badge or stairlift) that could help them maintain their independence and improve their quality of life, taking into account the risks and benefits. Include these in the person’s management plan.

    Page 21, 1.9.1
    Advise people with ME/CFS that:

    • there may be times when they are unable to continue with work or education
    • some people find that going back to work, school or college worsens their symptoms

    Very important.

    ----------

    Still too much of the management plan speak, and assumptions about establishing baselines and stabilising symptoms and progressing from there etc, in there for my liking.

    Page 29, 1.11.22

    1. Advise people with ME/CFS after a flare that the time it takes to return to the level of physical activity they had before the flare varies from person to person.
    Also need to advise patients that it is possible to push too hard and end up permanently worse off, and that it is very easy for that to happen.

    The section on physical activity needs special attention and close analysis. (Page 27, 1.11.15-22)

    Same for the section on CBT. (Page 32, 1.11.43-50)

    ----------

    Only up to 1.13, and that will have to do for me for today. So maybe there is something on this further on in the document, but...

    I think there needs to be explicit recognition of and discussion about how relevant 'professional advice' is to long-termers, most of whom have figured out the (more ME-specific) practical management stuff a long time ago, and do not need another round of 'expert knows best' dumped on them.

    Particularly in light of the fact that at this stage that even most of the best pros* still don't know much about it or how to manage it, and are taking their clinical management clues almost entirely from patients, especially long-termers.

    *With some exceptions, of course, like Charles Shepherd and Lenny Jason.

    ----------

    Me too. It needs to be gone over with a fine tooth comb before it can be endorsed.

    But it looks pretty good so far. A huge step forward.

    ----------

    A huge thanks to the patient advocates on the review committee. I have no doubt it was at times a frustrating and draining experience, maybe even a bit disheartening.

    You done good. :thumbup::hug:
     
    Last edited: Nov 10, 2020
    Sean, Nov 10, 2020
    #30
    Subtropical Island, Forestvon, janice and 40 others like this.
  11. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,926
    Location:
    UK
    WOW, it's great in so many ways :)
    A time to celebrate :party: ....and read again.

    Yes , there will be strong pushback from the pychs, some clinics will still try and manipulate words to pursue their agenda...

    BUT, this is a HUGE step forward.

    Well done to those on the committee and to all who have done their bit to advocate/complain/push forward and chip away at the BPS/PACE wall, over the decades

    AND the evidence review happened before COVID and the thousands currently experiencing long-term effects.
     
    MEMarge, Nov 10, 2020
    #31
    Subtropical Island, janice, Wits_End and 38 others like this.
  12. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    I wasn't sure about that. Considering the problems that surround ME/CFS, my instinct is that it could be best to avoid those patients most likely to naturally recover (those only briefly ill) getting a diagnosis or having contact with ME/CFS specialists.

    I find it difficult not to read the guidelines on the assumption that they will be being put into practice within a network of clinics run by people like Crawley and her BACME colleagues. That makes me feel nervous about any talk of specialist care. I don't know how fair that is. Are other people assuming the same?

    I'm still only a tiny way through it, and I suspect I'll need to read more than once to understand how things connect together too.
     
    Esther12, Nov 10, 2020
    #32
    alktipping, sebaaa, cfsandmore and 15 others like this.
  13. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,736
    Thanks everyone. We can't get into discussions about the specifics of the GL, as you all know, but I wanted to pop up and say that all your supportive comments for the lay members have really made this (very long) process worth it. :)
     
    adambeyoncelowe, Nov 10, 2020
    #33
    janice, Roy S, oldtimer and 66 others like this.
  14. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    2,181
    Location:
    Aotearoa New Zealand
    Yes, I've been wondering about that, too :nailbiting:
    This. Could be very important I think.
    A quick skim through this nauseating murk makes me suspect one of their main lines of argument will be that the draft recommendations are not evidence-based and therefore deprive patients of evidence-based therapies, in the hope that if they repeat it often enough it will start to sound true (they used the word 'evidence' a whole 11 times on that not very long page of comments).

    So any submission probably needs to reiterate at least briefly, yet again, what evidence there is against GET & CBT plus the fact the the so-called evidence for their use is no evidence at all.
     
    Ravn, Nov 10, 2020
    #34
    Subtropical Island, MEMarge, SedulousSloth and 28 others like this.
  15. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    I assume they must have done. S4ME, presumably, being seen as 'just' an ordinary stakeholder means that we haven't yet received any notification from NICE that the draft is out. Stakeholder engagement comes after publicity it seems for NICE.
     
    Andy, Nov 10, 2020
    #35
    Forestvon, alktipping, sebaaa and 15 others like this.
  16. Saz94

    Saz94 Senior Member (Voting Rights)

    Messages:
    3,632
    Location:
    UK
    This is much better than I expected. I'm really surprised, considering that there are so many BPS people on the committee. Massive well done to all the non-BPS people on the committee!
     
    Saz94, Nov 10, 2020
    #36
    janice, SedulousSloth, Dolphin and 26 others like this.
  17. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    Andy, Nov 10, 2020
    #37
    janice, Dolphin, mango and 28 others like this.
  18. Saz94

    Saz94 Senior Member (Voting Rights)

    Messages:
    3,632
    Location:
    UK
    I want a mug saying 'BPS tears' on it.

    (Probably shouldn't say that, should I? They're probably watching the forum for evidence of ME patients being mean about them. Oh well. Go cry yourself to sleep Mr Sharpe. Goodness knows you've caused us 10000x the amount of tears over the years.)
     
    Saz94, Nov 10, 2020
    #38
    alktipping, sebaaa, cfsandmore and 15 others like this.
  19. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    Trial By Error: NICE Draft Rejects GET, Lightning Process, and CBT-As-Cure
    https://www.virology.ws/2020/11/10/...ejects-get-lightning-process-and-cbt-as-cure/
     
    Andy, Nov 10, 2020
    #39
    Kalliope, mango, alktipping and 20 others like this.
  20. Saz94

    Saz94 Senior Member (Voting Rights)

    Messages:
    3,632
    Location:
    UK
    My main worries are:

    (a) BPS people trying to get it changed by arguing that GET is "evidence-based".

    (b) the BPS people will try to take control of the narrative by claiming that NICE has bowed to pressure from patients, rather than listening to the science. Unfortunately, a sizeable amount of the general public will likely accept that narrative, because (1) it's what they've been being told for decades and (2) it fits with other (false) popular narratives where privileged people complain that marginalised groups are oppressing them. And, how many doctors will listen to the BPS people and believe that NICE is being wishy washy and bowing to pressure from militant patients? I certainly know one doctor who will see it that way.
     
    Saz94, Nov 10, 2020
    #40
    Forestvon, Woolie, Dolphin and 18 others like this.
Page 2 of 62
Thread Status:
Not open for further replies.

Share This Page