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MSD Manual (US): Chronic fatigue syndrome - updated Apr 2020

Discussion in 'General ME/CFS News' started by Sly Saint, Apr 30, 2020.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    6,691
    Location:
    UK
    Chronic Fatigue Syndrome
    (Systemic Exertion Intolerance Disease; SEID; Myalgic Encephalomyelitis; ME/CFS)
    By

    Stephen Gluckman
    , MD, Perelman School of Medicine at The University of Pennsylvania

    Last full review/revision Apr 2020| Content last modified Apr 2020
    Consumer Version
    https://www.msdmanuals.com/en-gb/ho...nic-fatigue-syndrome/chronic-fatigue-syndrome

    @dave30th
     
    DigitalDrifter, Andy, Medfeb and 4 others like this.
  2. alex3619

    alex3619 Senior Member (Voting Rights)

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    1,641
    Sigh. Don't they ever read the literature on ME exercise physiology? An entire branch of research is routinely ignored.
     
    Anna H, EzzieD, Leila and 10 others like this.
  3. strategist

    strategist Senior Member (Voting Rights)

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    3,837
    There is a lack of evidence that a positive attitude enables a recovery. Arguably studies like PACE show precisely that despite infusing hope and optimism in patients, this doesn't lead to an increase activity levels or a return to work. This is not science.
     
    Anna H, MEMarge, Michelle and 12 others like this.
  4. spinoza577

    spinoza577 Senior Member (Voting Rights)

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    440
    in my personal view this is absolutely no surprise.

    There is a lack of experience that my positive attitude - which I still had - enabled any recovery.
     
    ukxmrv, Yessica, alktipping and 2 others like this.
  5. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    10,131
    WTF??

    Not only is this ignoring that if PACE proved anything it was that this doesn't work.

    Charities who carried out patient surveys - the only real long term follow up & the only attempt to capture harms - discovered that not only do these therapies not work, they harm.

    Then, as @alex3619 points out, they completely ignore some of the solid research that has been done.

    The author of this paper should be held personally accountable for this paper. There is simply no excuse.
     
    Chezboo, Anna H, MEMarge and 8 others like this.
  6. Barry

    Barry Senior Member (Voting Rights)

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    7,451
    Yes OK, people who are seriously physically incapacitated will unavoidably become deconditioned. But if they are seriously incapacitated, independently of any deconditioning, they are hardly likely to be able to do the exercise needed to recondition are they? Is it really that hard to understand? If a pwME is deconditioned, it's because their body cannot tolerate exercise. How does science tolerate scientists who fail to see this?
     
    Squeezy, Chezboo, EzzieD and 10 others like this.
  7. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    7,451
    I guess this is the positive outlook that will encourage a pwME to do the exercise their body is physically incapable of :rolleyes: :(.
     
    Mithriel, Yessica and Peter Trewhitt like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,321
    Location:
    Canada
    Evidence-based medicine was a huge mistake, evidence #2942976.
     
  9. shak8

    shak8 Senior Member (Voting Rights)

    Messages:
    1,143
    Location:
    California
    The Merck Manual, especially the version for doctors, has been and still is worse than Cliff Notes.

    A letter to Dr. Stephen Gluckman a good idea.
     
  10. Willow

    Willow Established Member (Voting Rights)

    Messages:
    46
    Location:
    Midwest, USA
    They just can't let this meme go. I have lost all faith in the medical profession.
    :wtf:
     
  11. Grigor

    Grigor Senior Member (Voting Rights)

    Messages:
    338



    Oh dear...
     
    MEMarge, EzzieD, Sly Saint and 5 others like this.
  12. alex3619

    alex3619 Senior Member (Voting Rights)

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    1,641
    I don't think EBM was a mistake, but its a human endeavour, and has been infiltrated by people pushing their own agenda. EBM also took a wrong turn with EB Management. When the primary outcome measure is cost, saving money, then its inevitable it moves in the wrong direction. Nearly the whole world took this turn circa 1980, its not just EBM that went this way.
     
  13. Sean

    Sean Senior Member (Voting Rights)

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    3,684
    The fact that medicine had to start promoting an 'evidence based' approach is the problem. What were they doing before?
     
  14. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,321
    Location:
    Canada
    It's for that reason that it's a mistake. It's far too permissive of woo and open to abuse. The problem is in execution, not in the underlying principles. Opinions have the same evidentiary value as basically anything else. It's much closer in practice to pre-science natural philosophy, debate matters more than evidence and eminence matters even more. Thought-terminating clichés are not only valid, they are commonly used, sign of a completely broken system whose only purpose is to perpetuate itself.

    It's a fixable problem but almost every effort goes in the wrong direction, there is a huge demand to lower the barrier even more, despite already being far below ground. The whole thing is rotten top to bottom.
     
  15. alex3619

    alex3619 Senior Member (Voting Rights)

    Messages:
    1,641
    ... and will continue to do so until they move from cost and subjective outcomes to effective objective outcomes. Cost can be a secondary measure only, and really only a factor in evaluating what to try first.

    To be fair a lot of EBM is still doing the right thing, and uses objective outcomes, but it tends to not be in the mental health division of things like Cochrane.

    There is a huge problem, that I have discussed very little, of over-interpreting research. The data is good, what doctors take away from that data is not. This seems to be the case for two areas in particular, the first being mental health (I also have a problem with even the label, its a misnomer), the second being diet and nutrition. Much of the research in both areas is over-interpreted, or is basically misleading, largely because they have poor methodology, poorly formed hypotheses, or a lack of sound outcome measures.

    My current bugbear, aside from lack of quality ME research, is in optimal diet claims. Every study I have seen looking at low carb versus high carb treatment of type 2 diabetes, and some other conditions, shows low carb is better. The studies that claim high carb is better presumed it was, then looked at what version of high carb is better. Even studies claiming to have tested low carb often have their low carb level at still very high carb. Our own national researcher the CSIRO even had a diet study showing all diabetes measures are much better on low carb, and its been ignored for many years. This problem of high carb extends to other areas of nutrition science as well, including fasting.

    Under-researched medical conditions are a whole class of their own though. What I see, and this is personal opinion, is that when doctors do not know stuff, including because there is no research, they go back to basic principles. They then tend to presume the basics must work. This is hope and a prayer based medicine, not evidence based.
     
    Andy, Arnie Pye, Milo and 6 others like this.
  16. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    618
  17. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    618
    Is there anyway that this can be retracted?? Anyone??
     
  18. Michelle

    Michelle Senior Member (Voting Rights)

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    181
    Like @Michiel Tack in the Medscape CME thread, I'm baffled that the same guy who authored that CME--which is quite good--could have authored this piece of crap. WTF?!! Does Merck have some agenda that Medscape does not? I'm so confused by this.
     
  19. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    9,617
    Location:
    Germany
    This is bullshit. By studiously avoiding CBT and the medical profession generally I have been able to have all the discouraging and grumpy thoughts I want over the last 6 years and have improved substantially (I could claim "recovery" in the BPS sense, but unfortunately my grumpy pedantry prevents me from being so flagrantly promiscuous with the use of words). Thank goodness my general sense of negativity and pessimism wasn't redirected.

    And the above evidence is at least as good as anything Mr Gluckman has to rely on.
     
    Andy, Arnie Pye, Amw66 and 9 others like this.
  20. Kalliope

    Kalliope Senior Member (Voting Rights)

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    4,546
    Location:
    Norway
    Trial by Error: Merck Manual Still Disseminates GET/CBT Advice

    The graded exercise therapy/cognitive behavior therapy treatment paradigm for chronic fatigue syndrome—also imposed on those diagnosed with myalgic encephalomyelitis, CFS/ME, ME/CFS, and other variants–is like the undead. This concept keeps reemerging from the fetid intellectual swamplands that spawned it, no matter how many times it is revealed as nonsense.
     

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