Dx Revision Watch
Suzy Chapman 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:
Dr Park states:
*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
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.
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: