Roy S
former DC ME/CFS lobbyist
- Messages
- 1,376
- Location
- Illinois, USA
Craig Maupin, on his "The CFS Report", recently posted a blog with a PDF of the following letter; apparently from 1994. I've not seen this before. His blog is well worth reading. As some say the past is prologue.
(If anyone sees any typos I made transcribing it please let me know)
http://www.cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html
(HHS/National Institutes of Health letterhead).
Dr. Keiji Fukuda.
Medical Epidemiologist.
Centers for Disease Control and Prevention
NCID/DVRD/VEHB
Mail Stop A15
1500 Clifton Road.
Atlanta, Georgia 30333
RE: CFS Article
Dear Keiji,
I read over carefully your response to the Annals and the revision of the case definition article. A masterful treatment and response. I can see nothing standing in the way of its acceptance now. The publication form was signed and returned to Mr. Wolfe a few weeks ago. Let me know if it has failed to appear and I'll be happy to forward another copy.
Now that the definition is revised, we could project at leisure what will come of it. I'd be very interested in your frank opinion on the matter when convenient. My own sense is that a few years of use in the field will once again verify that there is no demonstrable or reproducible differences between individuals who meet the full CFS criteria and those who can be said to suffer Idiopathic Chronic Fatigue. This would beg the question of whether additional revisions to the definition are warranted, or its entire abandonment.
I felt for some time, Keiji, that those who have CFS are at a certain point along a continuum of illness in which fatigue is either the most dominant symptom or the most clearly articulated by virtue of impressions on the part of the patient or physician that such a complaint is important. I predict that fatigue itself will remain the subject of considerable interest, but the notion of a discrete form of fatiguing illness will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome.
I know that I suggested this possibility in the 1991 NIH workshop and again at the CDC a year ago. But, the field is moving inexorably to that conclusion. What I would most like to see is that fatigue is not abandoned as a subject for careful consideration because of further failures of CFS case definitions or frustrations arising out of shrill pressures to justify an entity of dubious validity such as CFIDS.
Several people have articulated reluctance over the past decade to embrace a symptom like fatigue as worthy of study. They liken it to the diagnosis of jaundice at the end of the last century to cover a range of vastly different conditions. I disagree. I think it possible to view fatigue more akin to pain than nausea, symptoms arising by virtue of very definite physiological derangements. Perhaps more akin to pain than nausea, because there won't likely be found one locus in the brain that serves to evoke nausea. Maybe, we would have been smarter to have suggested that model to begin with, rather than easing through CFS hypotheses as a default pathway for a failed viral hypothesis. So be it.
In any case, I commend you again on your efforts to forge an international consensus that has scientific merit and is politically acceptable. Your efforts in CFS work should continue. I think your potential impact on the field would be even greater if you assume the position vacated by Ann. You would have the ability to integrate better epidemiologic principles into all of the studies that the Institute funds. I hope you will consider the position more seriously. If I can be of assistance in your deliberations, let me know.
With best regards.
Very sincerely yours
Stephen E. Straus, M.D.
Chief, Laboratory of Clinical Investigation.
National Institute of Allergy and Infectious Diseases.
cc: Janet Dale
