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UpToDate ME/CFS information

Discussion in 'General ME/CFS News' started by Webdog, Jun 13, 2018.

  1. Webdog

    Webdog Senior Member (Voting Rights)

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    As an aside, Komaroff is an editor for UpToDate's CFS content, which still promotes CBT/GET. The content screenshotted below was "last updated: Apr 10, 2018."
    https://www.uptodate.com/contents/t...yndrome-systemic-exertion-intolerance-disease

    uptodate2.png
     
    Last edited: Jun 13, 2018
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  2. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    have you got them on your list of websites you're challenging about CBT/GET @Webdog ?
     
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  3. Webdog

    Webdog Senior Member (Voting Rights)

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    Haha, you know me too well. ;)

    I have previously (unsuccessfully) complained to UpToDate about their CFS content. I fired off another message to them this morning.

    If anyone else wants to do similar:

    UpToDate's Editorial Policy: https://www.uptodate.com/home/editorial-policy
    End User Support Contact Page: https://www.uptodate.com/home/contact-us#end-user-support
    Email: customerservice at uptodate.com
    Phone: 1-800-998-6374 or +1-781-392-2000 Monday through Friday, 7 a.m. – 9 p.m. (Eastern)​
     
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  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    do you reckon it could be worth writing to Dr Komaroff himself??
     
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  5. Webdog

    Webdog Senior Member (Voting Rights)

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    I'm sure it is. The more letters the better. I'm a quantity over quality kind of advocate (I just send lots of letters and don't spend a lot of time getting them perfect). :wtf:
     
    Last edited: Jun 13, 2018
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  6. Webdog

    Webdog Senior Member (Voting Rights)

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    Got a quick note from UpToDate regarding their CFS page. I had asked them to 1) change the name of the disease to ME/CFS, and 2) remove the recommendations for GET/CBT. I felt these were the most glaring issues.
    @NelliePledge
     
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  7. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    @Webdog looks like another win then :thumbup::trophy@
     
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  8. Inara

    Inara Senior Member (Voting Rights)

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  9. Webdog

    Webdog Senior Member (Voting Rights)

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    Revisiting UpToDate again. After a strongly worded message yesterday, I got a ping back today.
    I requested UpToDate remove the old inaccurate ME/CFS content until the new content is available.
     
    Last edited by a moderator: Sep 13, 2018
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  10. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Great work @Webdog
     
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  11. WillowJ

    WillowJ Senior Member (Voting Rights)

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    UpToDate
    I think he is newly listed because he’s in the process of revising it. Someone else can likely say more.

    Hopefully they’ll have removed Gluckman, who seems to be incapable of sifting through the research problems in this area, when the revision is done.
     
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  12. Medfeb

    Medfeb Senior Member (Voting Rights)

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    That's what Dr. Komaroff has said. He was added as a section chief at the point that he agreed to work with them. UpToDate's last update incorporated info about the criticisms of the PACE trial and Oxford definition and AHRQ's decision to downgrade CBT and GET but then inexplicably still recommended CBT and GET.

    Gluckman is also the author on the Merck Manual guide which also recommends CBT and GET. - https://www.merckmanuals.com/profes...nic-fatigue-syndrome/chronic-fatigue-syndrome

    Before July 2018, that said "Cognitive-behavioral therapy and a graded exercise program are the only interventions proven helpful" but now says that they may help some people.
     
  13. Webdog

    Webdog Senior Member (Voting Rights)

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    Noticing some changes on the UpToDate website. There is no longer any mention of GET/CBT the front page. The article, however, still uses the bizarre term "CFS/SEID".

    https://www.uptodate.com/contents/c...yndrome-systemic-exertion-intolerance-disease

    I don't have an UpToDate subscription, and am trying to figure out if my wife has access through work. If not, I'll probably pay for a 30 day sub to read the full article and give further feedback.
     
  14. Inara

    Inara Senior Member (Voting Rights)

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    Thank you, so I misunderstood it.
     
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  15. Webdog

    Webdog Senior Member (Voting Rights)

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    I'll simply say it's not Komaroff and it's not Gluckman doing the updates and responding to my emails. :rolleyes:
     
  16. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Interesting. Glad you’re mailing them, whoever they are.

    That’s a small improvement but an odd conclusion as there’s some evidence that it doesn’t help anyone, even ICF. Better to not advertise these at all, IMO.
     
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  17. Webdog

    Webdog Senior Member (Voting Rights)

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    This is essentially what Healthwise said (in addition to citing NICE guidelines) when they downgraded GET/CBT, but didn't remove them. Healthwise asserted GET/CBT anecdotally remained helpful for some patients, and didn't want to completely remove this treatment option.

    It took another year before Healthwise agreed to completely remove GET/CBT from their ME/CFS content (and we still only have their promise that it will happen this fall).
     
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  18. Webdog

    Webdog Senior Member (Voting Rights)

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    Touched base with UpToDate today. Spoke with the deputy editor of infectious diseases at UpToDate (should be fairly easy to look up the name for anyone interested). She said the rewrite is still ongoing, but can't tell me the publication date. I was again told the new content should be in agreement with the CDC website.

    I stressed the urgency of having current (up-to-date?) ME/CFS information available to doctors as soon as possible so that patients can receive appropriate clinical care.
     
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  19. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    The name of the site is a total hostage to fortune. I wouldn’t be able to hold back on the sarcasm.
     
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  20. Webdog

    Webdog Senior Member (Voting Rights)

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    @dave30th @Medfeb

    UpToDate finally released their new "Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)" information on October 11. A subscription is needed to see the full content.

    I'm sorry to say that GET and CBT have not been removed, but they have been downgraded. Treatment-wise, UpToDate is where Healthwise was in their Fall 2017 update. Clinging to NICE and the idea that GET, can still be beneficial to a subgroup of patients, when done carefully.

    The CFS information is broken down into 3 different content sections, Clinical features and diagnosis, Treatment, and Fatigue (below). CFS is identified as a subset of fatigue patients (sigh).

    Clinical features and diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome
    https://www.uptodate.com/contents/c...ic-encephalomyelitis-chronic-fatigue-syndrome

    Treatment of myalgic encephalomyelitis/chronic fatigue syndrome
    https://www.uptodate.com/contents/treatment-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome

    Approach to the adult patient with fatigue
    https://www.uptodate.com/contents/approach-to-the-adult-patient-with-fatigue

    Some issues I still see are:
    • CFS used as the primary term, not ME/CFS.
    • CFS is identified as a fatigue illness.
    • Ancient research, including several papers from the 1980s, are often used as supporting evidence.
    • Although physical abnormalities are discussed, CFS is not explicitly stated to be a biological illness. Only that CFS "is an illness of uncertain cause." Depression is given as a possible cause of symptoms, and "Three observational studies verified that two-thirds or more of patients with CFS met existing psychiatric criteria for anxiety disorders, dysthymia, or depression after becoming ill"
    • GET/CBT is still recommended for some patients, but not as strongly. CDC and AHRQ are mentioned as no longer supporting GET/CBT, but NICE is cited in support of these treatments:
     

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