JAMA article: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

CFS_for_19_years

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Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
An IOM Report on Redefining an Illness
Ellen Wright Clayton, MD, JD
Viewpoint March 17, 2015


http://jama.jamanetwork.com/article.aspx?articleID=2118591
(Journal of the American Medical Association)


Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystem and often long-lasting disorder, with manifestations that can cause substantial morbidity and can severely impair patients’ health and well-being. It is estimated that between 836 000 and 2.5 million individuals are affected in the United States.1,2 Patients with ME/CFS are typically unable to perform their normal activities, and as many as one-fourth are homebound or bedridden, sometimes for extended periods.3 As a result, the personal and social effects and ramifications of this disease are enormous.
The committee concluded that a new name—systemic exertion intolerance disease—was warranted to capture the essence of this disorder until causation and pathophysiology are better delineated by research. Although patients differ in their triggers and manifestations, the salient feature of this disorder is that any kind of exertion—physical, cognitive, emotional—can adversely affect these patients in many aspects of their biological function and in their lives, frequently severely and often for a prolonged period. “Myalgic encephalomyelitis,” for which many people who provided input to the IOM study through testimony and public comments advocated, simply does not describe this disorder. “Chronic fatigue syndrome” fails to depict the complexity of this disease and is also unacceptable to many patients and their advocates, who reported that this term leads clinicians and others to belittle or even dismiss their disease. The new name, which should be accompanied by a new International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) code, also distinguishes this definition from previous ones. Thus, patients who meet these new criteria should be diagnosed with systemic exertion intolerance disease even if they also meet criteria for earlier variants of ME/CFS.
There are many good paragraphs in this article. I'd copy and paste the whole thing if it weren't for copyright issues. :(
 
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Ember

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Dr. Clayton doesn't mention that the Committee was under contract to “conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients:”
The Committee should review the efforts that have already been done, including the 2003 ME/CFS Canadian Consensus Definition, the 2007 NICE Clinical Guidelines for CFS/ME, the 2010 Revised Canadian ME/CFS Definition, the 2011 ME International Consensus Criteria, and data from the ongoing CDC Multi-site Clinical Study of CFS.
Do all these criteria represent “earlier variants of ME/CFS?”
 
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oceiv

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I was just about to post this article. IMO, this is an A-rated article. The last two paragraphs call for increased funding and greatly increased research. :thumbsup: Thanks, @CFS_for_19_years

Give this article traffic and help bump it up in your favorite search engine rankings by searching for it by title in your favorite search engine.

Direct link:

http://jama.jamanetwork.com/article.aspx?articleID=2118591



Search for this article by title in your preferred search engine:

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

(It's now the third result in a Google search)



Share on Social Media (Twitter, Facebook, Google, Reddit):

If you want a shortened link, here's one I just created (just copy and paste): http://bit.ly/1FClpTj

Possible hashtags: #MoreFundingNow #mecfs (just copy and paste)



Why it's so good:

It strongly calls for doctors to treat ME/CFS/SEID patients better, diagnose them earlier. It decries the lack of funding for our illness and calls for more funding and research. It emphasizes the seriousness of our disease.



@Sasha @SOC @Soundthealarm21 (thought you might be interested)
 

Ember

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Dr. Bateman: “I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, can not be used to describe someone who meets published ME criteria.”

Dr. Clayton: “The new name, which should be accompanied by a new International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) code (sic), also distinguishes this definition from previous ones. Thus, patients who meet these new criteria should be diagnosed with systemic exertion intolerance disease even if they also meet criteria for earlier variants of ME/CFS.”

These statements from the IOM Committee and its members need to be sorted out through the ICD-10-CM.
 

SOC

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Thanks, @oceiv! This kind of post gives PWME with limited ability to search out and read all the available articles (and that's a lot of us for various reasons) opportunities to participate in some constructive advocacy by supporting good articles. The amount of detail you gave -- how to support it, where it is, background info, and simple assessment is extremely helpful.

Three thumbs up to oceiv! :thumbsup::thumbsup::thumbsup:
 

halcyon

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The recommendations on the new ICD-10 code are so confusing to me. In the ICD-10-CM, ME and CFS are two distinct diseases, at two different codes, in two different sections, that explicitly exclude each other.

What section do they propose putting SEID in? As they didn't seem to be very impressed with the ME name or ICC definition, I'm guessing they wouldn't put it in G (diseases of the nervous system) with ME. I think the only other place you could put SEID would be R (symptoms, signs, and abnormal clinical and laboratory findings) with CFS.

The statement from Dr. Bateman further confuses me. So ME is a distinct disease from CFS/SEID? Why does the report talk about them as though they were the same thing? Why not just rename R53.82 from CFS to SEID then? What disease is the report talking about? Are they really two different diseases?

It's disappointing because they really could have cleaned house here. Pick up after the mistakes of the past. If you're going to trash CFS, go all the way. Delete R53.82 from the ICD. The only reason it's there is because the CDC didn't recognize Tahoe as ME right? If you really want a new name, just add it to the index, pointing to G93.3. Done and done. The disease of 1000 names becomes the disease of 1001 names, but at least we all know, from a technical standpoint, that we're talking about the same disease.

The ICD tracks diseases, not definitions. You can define a disease any way you wish, but that doesn't mean that each definition should get its own code in the ICD.
 

CFS_for_19_years

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@halcyon, my thoughts exactly, although I've got too much brain fog to put it all into words as you did! My other thought was, am I now supposed to insist that my doctor place another diagnosis in my chart (SEID along with it's new code, whenever it comes out), in addition to the CFS diagnosis and code that are already there? The article makes it seem so.