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CDC Treatment Evidence Review - updated thread. Request for comment from 17th May 2021.

Discussion in '2021 USA CDC ME/CFS Diagnosis and Treatment Review' started by Medfeb, Jul 2, 2019.

  1. Trish

    Trish Moderator Staff Member

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    Just reading the abstract this looks like a step backwards. I thought the CDC had already rejected CBT/GET.

    I don't understand why they would repeat in the conclusion that CBT/GET were effective, even with caveats. They should have thrown out all the subjective outcomes for these unblinded trials. They don't even mention that there was no objective or long term benefit shown in any of the trials.
     
    anniekim, Simone, DokaGirl and 24 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Why IN THE HELL did they include non-ME evidence in an evidence review on ME? Does cancer research include non-cancer patients and include them in their reporting? Of course not that would be insane. And yet here they do just this. WTF? Either they did not understand the assignment or the assignment was improperly defined.

    Does not inspire confidence. This took, what, 3 years? And they pollute everything they do by including unrelated evidence. Come on. Many of the trials use Oxford criteria, so did they go back on the decision to deprecate them? WTH? This review is all over the place, it's basically a review of alternative medicine for the most part.

    3 years for this. JFC.
    No, this is far worse than this, it's the applicability to ME that is worse than uncertain when they freaking applied an OR function to "unexplained tiredness".

    Somebody screwed up this is unacceptably bad.
     
    anniekim, Simone, Amw66 and 15 others like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree that on the basis of the abstract this looks really hopeless. One statement stands out:

    Although graded exercise and CBT were more effective than inactive control therapies (usual care, usual specialist care, or an attention control) in improving fatigue, function, and other outcomes,...

    No, they weren't more effective. There was a modest improvement which because of the nature of the trials cannot be attributed to the treatment. I am afraid I was never convinced that the CDC had ditched GET and CBT for intelligent reasons and I think this makes it clear that they really don't understand.
     
    anniekim, Milo, Simone and 31 others like this.
  4. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    ugh. I assume that the US NGO's will submit comments? Also Dave Tuller @dave30th should submit comments, since he has already done a lot of work in this area.
     
    Last edited: May 17, 2021
  5. strategist

    strategist Senior Member (Voting Rights)

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    Under limitations they do not even acknowledge the problem with CBT and GET trials consistently failing to control for reporting bias.
     
    Milo, DokaGirl, Starlight and 16 others like this.
  6. strategist

    strategist Senior Member (Voting Rights)

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    Also what is wrong with these people for considering a key question whether diagnosing ME/CFS causes harm?
     
    Milo, DokaGirl, Starlight and 7 others like this.
  7. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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    Well, at least they included Crawley's Lightning Process study. I would hate to think that they'd ignore the guidance to omit Oxford studies and not throw that in there.
     
    Simone, DokaGirl, Starlight and 3 others like this.
  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,126
    Given the mood music over the last couple of years, this is no surprise imo. We've been successfully portrayed as engaging in an attack on science that is driven by a fear of the stigma of behavioural interventions and needs to be fought back against by brave scientists. And we've made a lot of influential enemies.
     
    Simone, EzzieD, Yessica and 5 others like this.
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    I saw this on recovery in their 'key points' on GET:

    I just looked through the report for the bits related to that.

    They provide a really incomplete explanation of the criticism of PACE's recovery claims:

    Then they say:

    The 28% recovery rate for GET from PACE is wrong. Also, the references provided seem odd there.

    They mention the protocol specified PACE results, but provide no table for this analysis:

    They also ignore the protocol specified PACE results elsewhere, like table 5: "Exercise vs. inactive controls: Summary of stratified results".

    Reading this makes me think that things are likely to keep getting worse.

    edit: I guess mentioning that there are criticism's of the PACE recovery spin is slightly better than things were 8 years ago. Didn't the old AHRQ review have a bigger section on this though?
     
    Last edited: May 17, 2021
    Simone, Amw66, EzzieD and 12 others like this.
  10. Ariel

    Ariel Senior Member (Voting Rights)

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    Is this going to be improved in the final version? I don't really understand the implications here; seems very bad.
     
    Simone, Starlight, EzzieD and 6 others like this.
  11. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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    I took a look on Twitter to see if there was any discussion of Roger Chou, in any context. Lots of chatter from people about chronic pain & opiods, and there's quite a bit of concern from interested parties. I only post this because I found a hashtag that popped up a couple of times wryly amusing, though of course there's nothing funny about it--that the new prescribing guidelines are a matter of

    #savingustodeath
     
  12. Hutan

    Hutan Moderator Staff Member

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    What an inept muddle this evidence review is.

    When I looked at the global situation, I thought we were seeing BPS proponents somewhat ceding ME/CFS, and concentrating on the rich pickings of other MUS and Long Covid. I thought recent gains in the UK would hold. I certainly did not expect that the earlier gains in the US would be vulnerable. And yet, here we are.

    I wonder if the delay in work on a replacement for the Cochrane exercise review is somehow related to this US evidence review.
     
    Simone, Starlight, EzzieD and 15 others like this.
  13. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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    I don't think they're connected, though it's possible (if there's a connection to anything, I would think NICE, although not sure the time frames allow for that speculation to be more than paranoia). I do think, however, that this is not a matter of ineptitude at all. I find it difficult to believe that anyone would've put this much work into something that produced this result based on conscious choices if they hadn't very purposefully ignored most/all of the sanctioned publications that have come down the pike in recent years. It's pretty much directly at odds with the document it's intended to replace, not to mention the IOM report. Doesn't seem like they cared that the CDC revised their case definition either.

    This was deliberate.
     
    Simone, Starlight, EzzieD and 12 others like this.
  14. Trish

    Trish Moderator Staff Member

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    To be honest I think that point is irrelevant. A university was commissioned to do a systematic review of research on diagnosis and treatment of ME/CFS. If they use flawed review methods here, presumably they would do the same for any other research review, not just for ME/CFS. I can't see that the harassment narrative, which is largely UK based, would have anything to do with it. They have simply done a shoddy review job.


    The Request for Comment document says this:
    https://www.regulations.gov/document/CDC-2021-0053-0002

    I think pointing them in the direction of the NICE evidence reviews would be helpful, given that they were much more critical, and presumbably based on the same research papers.

    The NICE process was published for consulatation with the evidence review and draft guideline together all at the same time. Here, it's just the evidence review at this stage, and it will be used as a basis for the guideline yet to be written. I guess it is still possible for the guideline writers to draw the same conclusion that NICE did, that there is not sufficient evidence to support the CBT/GET approach.

    Edit to add:

    Reading further, they also want wider comment:

     
    Last edited: May 18, 2021
    anniekim, Simone, Starlight and 12 others like this.
  15. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Apologies for just popping in -- but if this actually was done by people affiliated with the Cochrane back group as seemd to be discussed at the beginning of this thread and here + follwing posts, then the outcome wouldn't come as a surpise to me.
     
    lunarainbows, Simbindi, Ariel and 4 others like this.
  16. rvallee

    rvallee Senior Member (Voting Rights)

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    I don't think this can be improved upon. This is the kind of bad where if it were submitted for a class the only proper response is to demand to do it again, correctly this time, or get a 0.

    One thing I don't think the people involved in this, at the CDC or NIH, get is that they will get absolutely no credit for anything they are doing. If there is ever progress, it will be despite their worst efforts, they will get absolutely no recognition for having been part of the solution because they simply never bothered putting in any effort.

    So I don't even understand why they bother. They can claim to check the minimal legal requirements for now, I guess they just don't expect that there will be an after. But this counts against, as part of the problem, not as a contribution to the solution.

    I will make that point in my comments, and in the future. I think that point should be made more. I get that they will not understand it right away but it needs to be made. This is not trying, this is not bothering with a minimal effort. It counts against, which means everyone is unhappy. The people who did this tripe are unhappy because they feel it was a waste of time. And so it was. We are unhappy because it contributes to the problem. They will get blamed for it in the end, unhappy about both the process and the outcome.

    I'd much rather they just say what they mean and stop pretending. It's not as if it makes any difference, but the lies are just an added insult to injury, injury which they aggravate and amplify, doing the wrong thing for the wrong reasons.
     
    EzzieD, Aslaug and Art Vandelay like this.
  17. Trish

    Trish Moderator Staff Member

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    As a reminder, here's a link to the page on the CDC website that links to the protocol for the review. (November 2019)
    https://www.cdc.gov/me-cfs/programs/evidence-review.html

    I have just glanced back through this thread and it seems, if I have it right, that the previous review excluded Oxford defintion studies, yet this one has included them. A huge step backwards if that's true.
     
    alktipping, Milo, Simone and 12 others like this.
  18. Science For ME

    Science For ME Forum Announcements

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    The forum staff believes it is important that the CDC receives well-informed feedback on this evidence review given that it will inform the development of ME/CFS management guidelines in the US and elsewhere.

    We've set up dedicated threads for each section of the document in the Members Only Advocacy Planning sub-forum. We encourage members to post their feedback in the relevant threads. We hope that this will serve as a useful resource for individuals and groups drafting responses.

    Links to the feedback threads:
    2021 CDC Evidence Review: Comments on 1. Introduction, Background, Purpose, Methods
    2021 CDC Evidence Review: Comments on 2. Key Q1: Frequency of non-ME/CFS conditions
    2021 CDC Evidence Review: Comments on 3. Key Q2: Benefits and harms of ME/CFS diagnosis
    2021 CDC Evidence Review: Comments on 4. Treatment - CBT and other behavioural approaches
    2021 CDC Evidence Review: Comments on 5. Treatment - Medications
    2021 CDC Evidence Review: Comments on 6. Treatment - Exercise therapy
    2021 CDC Evidence Review: Comments on 7. Treatment - Dietary interventions, supplements, alternative therapies
    2021 CDC Evidence Review: Comments on 8. Discussion, Abstract, Conclusions, Limitations, Future Research

    These will be pinned to the top of the Advocacy Planning forum thread list during the consultation period, so you can find them easily.

    We won't be creating summaries of the feedback as posts are made. We will consider whether we develop a Science for ME response later in the 3 month consultation period, after reviewing the level of posting. If you are interested in being involved in the development of an S4ME response based on the posted comments, please let a moderator know.
     
    Last edited by a moderator: May 20, 2021
  19. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I'm in favour of a S4ME response, and can probably contribute. I need to look through the review first and decide, and also see if the CMRC PAG wants to submit a response (though I suspect we might not due to other commitments).
     
  20. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Some questions. Perhaps @Medfeb knows the answers...

    (i) Do organisations have to pre-register in any way, or can anyone submit a response?
    (ii) Is this a draft of a final product, or is this document used to, for example, create a set of guidelines/recommendations?

    It's really not very user friendly to just upload a 400-page document, is it? At least the NICE guidelines are in a digestible format.
     

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