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IOM Report Hits The Mark, By Emphasizing the Hallmark Symptom of This Disease 

(Craig Maupin, February 10, 2015)

 After months of waiting, the IOM's much anticipated report on ME/CFS --Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness-- was released today.    

The IOM report deserves support. For the IOM report to be a success, the report needed to emphasize what makes this illness unique.   The IOM succeeded in that task.

   The IOM report will benefit those who suffer from this disease in the following ways:

1. The report emphasizes the distinct clinical features of the disease. Post-exertional intolerance is the symptom most likely to differentiate this illness.   Systemic exertional intolerance disease --SEID--- fits.   Period.

2. This disease IS a systemic disease. Research into pathogens, circulatory abnormalities, and immunological abnormalities is a must if we are to make progress. Such progress will be more difficult under a “fatigue syndrome” OR a pain-centered/brain-foremost term.

 3. There will be those that want the primary symptom of fibromyalgia --myalgic-- to be emphasized, rather than post-exertional intolerance. Fibromyalgia – having a multimillion member patient set--- possesses a different symptom set, an extremely different response to exercise/activity, and different findings in regard to immunological and circulatory dysfunction.
         Under the “fatigue syndrome” or “myalgic” research rubric, having the key features of the disease understood, properly diagnosed, and researched will be more difficult.  The CFSSEP's pain and brain foremost approach has demonstrated this problem, year after year.

  The report addresses a continuing problem of putting deconditioned or unmotivated patients into research studies DIRECTLY, by putting the illness on a firm foundation clincically. For the first time, we have a clinical definition based on the defining features of the illness, rather than political needs, special interests, or personal attributions.

To create an effective a definition for this disease, the approach of a long laundry list of symptoms had to be discontinued.   This doesn't preclude the secondary symptoms of being used, but it does emphasize what makes the illness unique.  

There is a great deal of skepticism toward the report and the new name, SEID (systemic exertional intolerance disease).   This skepticism has an understandable historic foundation, given the health department’s disturbing past handling of this disease. 

 However, one of the most difficult things to say is:  "I was pleasantly surprised".   We simply don't have a history of being pleasantly surprised by any health department efforts for SEID.    I was pleasantly surprised by the report, and I admire those who say the same - honestly and with courage.  Whether those who supported the IOM from the start admit it or not, those who opposed the report probably played a role in pushing the IOM in a better direction as much, if not more so, than its supporters. 

  In the coming days, there will be those who say emphasizing post- exertion intolerance doesn't fit their traditional advocacy approach, wasn't properly vetted, is imperfect, so we must comfortably return to the past, to our traditions.   Many will claim that the report doesn't add one of their own symptom requirements as a hallmark, so we must reject its proposal altogether.     

For me, those criticisms fall short of the primary goals I have as a sufferer of this illness -- better research, better clinical accuracy, less public apathy.  Though no name or definition will solve our problems, I would rather see accuracy in clinical diagnosis and scientific research, than "tradition".    

 To break with the past, there has to be a start.    An effort has to be made to put the hallmark clinical feature of this illness on the map. This report is a good faith effort to do so.  Though no day is perfect, today was a surprisingly good day. Perhaps the first day the US Health Department made a good faith effort to break from its plagued past in handling a disabling and devastating disease.