http://www.bmj.com/cgi/eletters/335/7617/411
Latest eBMJ responses on White et al
~~~~~~~~~~~~~~~~~~~~~~~~
Imprudent Neglect of CFS History
15 September 2007
Erik Johnson,
Incline Village NV 89450
The proponents of various reinterpretations of
Chronic Fatigue Syndrome appear concertedly
neglectful that CFS has a verifiable history which can
be traced back to a very specific time and place -
and a particular pivotal phone call made by Dr
Peterson which set the entire process in motion.
It could have been different. The CDC might have
responded to any of a number of different doctors
who were reporting the mysterious illness across the
USA, but as it happened, Lake Tahoe seemed like a
more desirable place to conduct an investigation. By
such quirks is history determined.
The initial identification of the epidemic to the direct
creation of the partial symptom collation which was
called CFS can be traced in an unbroken chain of
events performed by specific people who are still
accessible.
There is no need for any confusion about what CFS
originally was meant to describe, because the story
is accurately depicted in Osler's Web, reiterated by
Dr Peterson's contribution to the Canadian Consensus
Guidelines, and the individuals involved are mostly
still alive, and able to answer anyone who cares to
ask about their experience.
When a group of people is selected to become
prototypes for a syndrome, does it not seem
spectacularly imprudent to conspicuously ignore them
and turn the illness into something else?
-Erik Johnson
Incline Village 1985 Yuppie Flu survivor
1988 Holmes et al CFS study group participant
Competing interests: None declared
This is, unfortunately, the history of CFS in a nutshell. Someone with the power to do so, so desperately wanted it to be merely hysterical depressed menopausal hypochondriacs that when it became apparent that patients like Erik and the school children in Lyndonville could not be written off as "menopause", the symptoms that differentiated CFS (or ME, if you prefer) from depression were quietly removed from the diagnosticcriteria. Voila, by redefining the illness into something else entirely, Straus & Co. succeeded in getting their way: lump a bunch of patients whose actual problem *is* menopause/depression/hypochondria in with those of us who had a post-viral system collapse, and hope that no one notices the deception which "proves" Straus's initial uninformed statements.
Others circulated the misinformation that CFS patients were reporting every symptom under the sun, which proved that we were just imagining things, or faking to avoid work. Small problem, those of us who really *do* have CFS (or ME, if you prefer) were reporting the same symptoms across the board, even without knowing other patients. I didn't know anyone with CFS when I got sick, and wouldn't "meet" Erik for another 15+ years, yet I reported the same symptoms as Erik, hundreds of miles away. That's either an incredible case of ESP, or proof that we have the same disease, because it's statistically impossible that we would choose the same symptoms from a list of zillions, and that thousands of other CFS patients would also choose the same symptoms from a list of zillions, if we really were "just faking".
Yes, there is a long list of symptoms possible in CFS, but eventually a neurologist clarified that every single one of them could be caused by Central Nervous System dysfunction -- there was that connecting link that made it all make sense. Except to those who were trying to re-define it into something else entirely for purposes of their own, and didn't want to hear that there was a logical explanation for the cornucopia of symptoms. This information was swept under the rug until the internet made it possible for people (like me) to make it public without CDC/NIH or the AMA having the opportunity to edit it out before publication.
They've now succeeded in defining CFS in such a way that neither Erik nor I really fall into the category any more, but they've also eliminated in the US the ME diagnosis that would encompass us. Like the fabled Man Without A Country, Erik and I (and many more like us) have become Patients Without A Disease, as the very patients who were the core of the investigation have been defined out of the disease that was created for them.
That's the real "inconvenient truth" -- that patients who were supposed to be the epitome of the disease called CFS now find that the "experts" say they musthave something else, but have taken away the historical Myalgic Encephalomyelitis diagnosis that would match our symptoms, leaving us adrift on a sea of rewritten history.
No comments:
Post a Comment