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UpToDate® site CFS pages re-edited with "SEID" as though "SEID" were a done deal

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Dx Revision Watch, Mar 30, 2015.

  1. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    UpToDate® is a physician-authored clinical decision support resource:

    http://www.uptodate.com/home/about-us

    Its content is also used as a resource for CME (Continuing Medical Education) credits and the site is integrable with some EHR (Electronic Health Record) systems. It's a big site.


    There are at least three articles specifically on CFS.

    The patient information article can be accessed in full here:

    Patient information: Chronic fatigue syndrome (systemic exertion intolerance disease) (Beyond the Basics)

    http://www.uptodate.com/contents/chronic-fatigue-syndrome-systemic-exertion-intolerance-disease-beyond-the-basics?source=related_link

    (The page was last updated on February 24, 2015.)



    In order to access the full content of the two articles written for physicians, you need a subscriber log in. But you can read the Introduction texts for the two clinician targeted pages, here:

    Clinical features and diagnosis of chronic fatigue syndrome (systemic exertion intolerance disease)

    http://www.uptodate.com/contents/cl...rtion-intolerance-disease?source=related_link

    (This page was also updated on February 24, 2015.)


    and the article on treatment here:

    Treatment of chronic fatigue syndrome (systemic exertion intolerance disease)

    http://www.uptodate.com/contents/tr...rtion-intolerance-disease?source=related_link

    (This page was updated on March 19, 2015.)


    All three articles were originally authored and edited by

    Author Stephen J Gluckman, MD (Professor of Medicine, University of Pennsylvania School of Medicine)
    Section Editor Mark D Aronson, MD (Professor of Medicine, Harvard Medical School)
    Deputy Editor Lee Park, MD, MPH (Instructor in Medicine Harvard Medical School)


    As you'll see, these articles were revised shortly after release of the prepublication version of the IOM's report, to include "SEID", "CFS/SEID" and "CFS/systemic exertion intolerance disease (SEID)", as though the panel's recommendations for a new name and new criteria were already adopted.

    The patient article is peppered with "CFS/SEID" and "...chronic fatigue syndrome (CFS), also called systemic exertion intolerance disease (SEID)."


    Last week, I flagged up this issue on Twitter and a contact approached the site's editors.

    He raised the following points:

    • that it had come to his attention that the UpToDate® website features several articles about chronic fatigue syndrome which state that it is also called "systemic exertion intolerance disease" or "SEID";
    • that the change of name from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to Systemic Exertion Intolerance Disease (SEID) is only a proposal at this juncture, recommended by the Institute of Medicine (IOM) to the U.S. Government in their independent report published February 10, 2015 and titled: "Beyond ME/CFS: Redefining an Illness";
    • that it would be sensible to remove references to SEID or Systemic Exertion Intolerance Disease from the website and/or to refer to the disease as ME/CFS;
    • that he recommended referring to the IOM report, itself, as it is an important document and serves as an important reference in its own right;
    • that until such time as a response has been released from the U.S. Government departments who commissioned the review, it is not known if any or all of the IOM proposals will be accepted. And that these proposals, if accepted, will only apply to the USA;
    • that he considers the articles' authors and editors somewhat premature in updating the website and suggests they consider either an explanation or that they should revert to using the status-quo text.
    A response has been received from Lee Park, MD, Deputy Editor, Primary Care.

    Dr Park states:

    • that the author of the topic preferred to add the SEID into the topic.
    • that prior to the IOM report, they did not refer to the topic as ME/CFS but as CFS.
    • that he would pass this feedback onto the author to see if he would like to make any changes.
    • that he would defer to the author on this issue.
    • that the author (Stephen J Gluckman, MD*) was one of the peer reviewers on the IOM report.
    • that the editors changed the diagnostic criteria in the patient information section based on the new IOM report [criteria]. However, they should have also added [the report] as a reference and would do so.

    *Stephen Gluckman is listed on page vii of the Prepublication copy of the report under the list of independent Reviewers who had reviewed a draft version of the report.

    "Although the reviewers (...) provided many constructive comments and suggestions, they were not asked to endorse the report’s conclusions or recommendations, nor did they see the final draft of the report before its release." Source: IOM Report Prepublication copy


    As one of the report's independent reviewers, when Dr Gluckman re-edited these three CFS articles - hot on the heels of the report's pre-print release - he would have been aware of the IOM panel's remit and that the recommendations within their report were recommendations.

    That they had not been reviewed or approved or adopted, in full or in part, by HHS, CDC or any other agency with a stake in the IOM contract.

    That stakeholder agencies have issued no statements or responses to the report and no information has yet emerged about any intention to put the report and its recommendations out for formal or informal consultation.

    That no timeframes for review, revisions, decisions or potential implementation have been published.

    And yet, Dr Gluckman has gone in within days of the report's pre-print publication and re-edited these articles from "CFS" to "CFS/SEID" and from "chronic fatigue syndrome (CFS)" to "chronic fatigue syndrome (CFS), also called systemic exertion intolerance disease (SEID)" and inserted criteria based on the [proposed but not yet approved or adopted] SEID criteria as though the panel's recommendations are a done deal.

    Thoughts?


    Suzy Chapman for Dx Revision Watch
     
    Last edited: Apr 1, 2015
  2. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    UpToDate was pretty useless for us before this. I can't see the whole articles, but I hope something has improved.
     
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  3. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    You should be able to see the Patient information article.

    I haven't yet located cache pages for the articles before they were edited from Feb 24, so I can't compare with the previous version.
     
    Last edited: Mar 30, 2015
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  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    ack! they did not remove the CBT/GET recommendations and it still seems a bit patronizing (will need to look at pages for other diseases to compare before complaining,though)
     
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  5. Denise

    Denise Senior Member

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    fwiw - A former writer for Up-to-Date told me that editors often point out (to authors) articles they wanted included in content.
     
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  6. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    The content is a concern, but the focus of this thread was to draw attention to the fact that an independent reviewer of the Report has changed the CFS pages, which were originally authored by him, to incorporate the "SEID" name and criteria when these IOM recommendations have yet to be accepted, approved or adopted.
     
    Last edited: Mar 30, 2015
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  7. PennyIA

    PennyIA Senior Member

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    Agree... I saw the CBT/GET recommendation and got kind of upset. SIGH.

    And you can see how they tried to keep a lot of the old things - like how important it is to rule out other things, but oh... that it doesn't mean you can't have other things. And my doctor that I wish I could find a better replacement for? Lives and breathes by UpToDate.
     
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  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I can see how it is difficult to use a name that isn't coded.

    But as far as citing the report and criteria, I don't really see any grounds to prevent that from a non-government entity... the material has been published, and whether DHHS accepts it or not seems immaterial to anyone other than DHHS.

    Seems to me that everyone else is free to cite, not cite, or selectively cite any of the materials as they see fit.
     
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  9. Nielk

    Nielk

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    It doesn't seem that what they are doing here is citing the report. They are basically stating that the new criteria and the SEID name is already functional, which they are not.
     
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  10. zzz

    zzz Senior Member

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    Ah, Stephen J. Gluckman. Just as the Kardashians became famous for being famous, Gluckman became a CFS authority by acting as a CFS authority.

    In reality, he has no knowledge or expertise in CFS whatsoever - and basically admitted that in a phone conversation with my doctor.

    For full details on Stephen J. Gluckman and his spectacular lack of qualifications, please see the first post in the thread Why your doctor may not be listening to you, along with this post and this post.

    Gluckman's blundering around with the name change is typical. UpToDate® needs someone who knows something about this illness to do completely new articles.

    I would strongly recommend reading these posts I cited to understand the depths of this man's ignorance and bias.
    That's assuming that he read the whole report, which is an awfully big assumption in Gluckman's case.
    Yes, the guy is simply completely incompetent, as a review of the posts I cited will show.
    I took out a short-term membership in UpToDate last summer just so I could get the entire text of these articles, which I still have. Aside from the name change, everything else is the same in the current articles, with one exception: The second list of criteria under symptoms in the main article has been updated to reflect the SEID definition. Other than that, everything is the same - most of it is identical word for word. The Treatment section of the main article is completely unchanged, with CBT and GET as the top two treatments, completely ignoring the fact that these are not recommended in the IOM report. In fact, the treatment section is word for word identical to what it was previously, with the exception that the alternative name "SEID" has been added. This gives the completely erroneous impression that these treatments have been deemed appropriate for SEID, which they most definitely have not been.
    The articles are simply what they were before, with the name change and minor exception I mentioned above. As I noted in the previous posts of mine that I cited, they are basically a 1990 view of CFS, and not even a very good one for 1990. In other words, they are OutOfDate.

    The rest of UpToDate is quite good, however. It is very widely used, and doctors pay hundreds of dollars per year for a subscription.
    Yes, basically Gluckman just changed the name and left everything else intact. This includes the article references. The most recent of the four references cited in the main article is dated 2006. Of the four references, one is by Stephen Straus and another is by Simon Wessely - the foremost American and British psychobabblers respectively. The other articles, which are presumably unchanged in the whole as their first parts imply, cite Wessely and his cohorts extensively. Gluckman leaves no doubt as to where his sympathies lie.
    A huge number of doctors do - yours is no exception. Basically, these articles are a disgrace, and need to be replaced. The fact that so many doctors rely on UpToDate means that this is a very influential source of information.
     
    Last edited: Mar 30, 2015
  11. Sean

    Sean Senior Member

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    As you all know, I am not opposed to the SEID name. But I am certainly opposed to it being treated as a done deal like this. Shouldn't be used in any official capacity until and unless it is formally accepted (and only after wide ranging consultation with all legitimate parties, including patients).
     
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  12. Snow Leopard

    Snow Leopard Hibernating

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    The "UpToDate" article was horribly dated, with mostly 90s articles, as of last year, I doubt it has been improved much, if at all since then.
     
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  13. SOC

    SOC Senior Member

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    So much for "up to date." Sheesh. :rolleyes:
     
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  14. acer2000

    acer2000 Senior Member

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    The way doctors use UpToDate is kind of scary. They see it as a substitute for actually reading the literature to learn about a condition. Its kind of like how "regular" people use WikiPedia.
     
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  15. Snow Leopard

    Snow Leopard Hibernating

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    Doctors over here just use Wikipedia (not joking).
     
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  16. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Thanks for this comparison with the previous versions of the texts.

    The blanket incorporation of the "SEID" term within these articles also misses a key recommendation within the report that "CFS" should no longer be used as the name of this illness.
     
    Last edited: Mar 31, 2015
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  17. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Absolutely, Sean.

    I shall be writing to the editor, Lee Park, MD, later today, CCing to Dr Gluckman.
     
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  18. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    I have no problem with any organization, commercial or NGO, or academic institutions or individuals citing recommendations within reports or referring to proposals from published research or review papers or from discussion documents, as long as it is made quite clear that what is being cited are proposals and that they are properly referenced and presented within the context of their source and in the context of their current status.

    That is not what is being done within these articles.
     
    Last edited: Mar 31, 2015
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  19. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Page 241, IOM Report, Prepublication copy:

    Extract:

    DISSEMINATION STRATEGY

    DISSEMINATION ACTIVITIES

    Online Outreach

    (...)

    HHS should undertake a thorough audit of all of its online resources to ensure
    that the information presented reflects the new criteria and terminology.
    Examples of third-party websites that have been cited by health care
    providers as leading sources for new information include (De Leo et al.,
    2006; Glenn, 2013)

    • Epocrates (www.epocrates.com),
    • Mayo Clinic (MayoClinic.com),
    • Mdconsult (www.mdconsult.com),
    • Medscape (www.medscape.com),
    • Skyscape (www.skyscape.com),
    • Uptodate (www.uptodate.com),
    • WebMD (www.webmd.com), and
    • Wikipedia (www.wikipedia.com).​
     
    Last edited: Mar 31, 2015
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  20. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Here's another site jumping the gun.


    MedicineNet.com


    http://www.medicinenet.com/chronic_fatigue_syndrome/article.htm

    Chronic Fatigue Syndrome (CFS) or Systemic Exertion Intolerance Disease (SEID)

    Medical Author:
    Charles Patrick Davis, MD, PhD
    Medical Editor:
    Jerry R. Balentine, DO, FACEP


    Throughout this nine section article the editors have replaced "CFS" and "Chronic fatigue syndrome" with:

    "Chronic fatigue syndrome (CFS) or systemic exertion intolerance disease (SEID)"

    "CFS/SEID"


    "CFS or SEID"

    etc.


    On Page 1 it says:

    "In 2015, the Institute of Medicine proposed a new name for this syndrome - systemic exertion intolerance disease (SEID)."


    But there is no caveat on the first page or the page index that the IOM recommendations have not yet been approved or adopted.


    On Page 5, at the end of section:

    "How is chronic fatigue syndrome (or systemic exertion intolerance disease) diagnosed?"

    it states:

    "Below is the new proposed criteria for SEID; the new report used an older designation (ME/CFS) but the criteria are for SEID; this fact shows the medical terminology problems when new names of diseases are proposed."


    But the proposed SEID criteria don't appear to have been inserted into the text.

    The text was reviewed on 2/27/2015.

    So, despite the fact that MedicineNet.com does acknowledge the SEID term as an IOM proposed term and refers to the (apparently missing) SEID criteria as "new proposed criteria", nevertheless, it has replaced "CFS" for the conflation term, "CFS/SEID" throughout the article - a term that is not being recommended by the IOM.

    What a dog's breakfast.
     
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