Further to Mary's comments yesterday about the way the government committees approach and disparage CFS and CFS patients, read http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=317x1629
Dr. David Bell, who treated the 1984/85 Lyndonville epidemic, commented about CDC: they could have made one worthy contribution: they could have prevented the skepticism that now rules supreme in the medical profession at large. All they needed to do was admit, “Yes, these people are ill.”
Instead, the head CDC researcher into CFS originally made statements that the problem was these were simply depressed menopausal women ... which I'm sure was news to the parents of the 5 year old patients and the wives of the male patients!
Then, instead of saying that this epidemic had a great deal in common with the brain disease Myalgic Encephalomyelitis, CDC decided to re-name it "Chronic Fatigue Syndrome", with the expressed intention (documented by their own memos via a FOIA request) to make it sound frivolous and unworthy of Disability benefits. They succeeded: many, if not most, CFS patients are denied the benefits they are legally entitled to. Most of those who succeed in getting their benefits get them for co-existing conditions, like depression or arthritis, rather than for CFS.
In 1995 -- 12 years ago -- Dr. Mark Loveless, an infectious disease specialist who runs an AIDS and CFS clinic at Oregon Health Sciences University, testified to Congress that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death". His statement was supported by data from clinical research conducted at OHSU and by the experience of other CFS experts.
Yet, even that expert testimony based on objective data did not convince CDC to stop insinuating that the problem was minimal and purely psychological. It was not reported in the mainstream media, so it didn't do anything to change the minds of the general public, either.
Even when, a year ago, CDC reported having found objective biological evidence of CFS, they in the very same press conference reverted to their old ways of stressing "stress" as the cause, rather than the virus documented by numerous non-CDC researchers and reported by most patients. By slipping that word into the press conference, they ensured that the psychobabble connection would continue to be reported, and, in fact, one of the stories carried in newspapers nationwide skimmed over the biological evidence to continue to perpetuate the myth that patients are just emotional basket cases with no biological reason for their symptoms.
Doctors who were only half-listening (if that much) pooh-poohed the idea that a virus you had months ago was causing problems now; what I actually said was that I had problems continuously since the virus in February, not "I had a virus in February and my problems started in November". It was in November that the problems got bad enough that I had to stop working because of them, but I had never returned to normal after the virus.
And again a dozen years later, when I relapsed so severely that I lost my job, the doctor never quite got it that I had never returned to normal after the virus, and tried to find more recent reasons for the symptoms instead of acknowledging that the effects had been continuous since the virus in February 1987. In remissions, I felt "better", but I never felt "normal"; even in remissions, I had to take precautions and watch my energy expenditure.
But, encouraged by the CDC's stance that the problem was purely psychological, that doctor took the view that I say I have CFS to avoid the stigma of admitting to mental illness by saying it's depression. Frankly, nowadays, most people understand that depression is a biochemical problem and not a character flaw, so there's a heckuva lot less stigma to depression than there is to CFS, which (thanks to CDC) is still viewed as laziness more than an actual biologically-based illness.
The real irony here is that if I had filled out my Disability paperwork claiming depression (or any other mental illness), I'd have been approved pretty quickly on my word alone; but because I said I had CFS, my word wasn't as believable as that of a crazy person! The judge keeps sending it back claiming "no objective evidence" ... what objective evidence is there that the guy babbling religious drivel on the street corner isn't putting on an act and is perfectly normal once he's home? In fact, I have objective evidence -- blood tests and orthopedic problems that can't be faked -- but the judge doesn't want to acknowledge it because he's blinded by the initial diagnosis of CFS.
The big political question here is, if CDC continues to ignore tons of biological evidence and claim the problem is just people who can't handle a little stress, why has Congress not stepped in to do something about it? Remove all the people who unreasonably continue to espouse a psychological cause and replace them with researchers who will acknowledge that there's ample biological evidence, that anti-depressants have repeatedly been proven useless, that the only medications which have shown promise are anti-virals.
A virologist is better-suited to researching this illness than someone whose acknowledged expertise is in Effects of Stress, yet that is who CDC currently has in charge of researching CFS. There's an old adage, "if the only tool you have is a hammer, everything looks like a nail". And if you want to see stress (or depression), you will hammer the facts until they fit your paradigm.
One of my doctors carefully eliminated reference to any symptom that wasn't compatible with the depression diagnosis he desperately wanted to make. If I didn't have the fever, then I didn't have CFS. If I didn't have the swollen glands, then I didn't have CFS. If the only symptom he noted was fatigue, then I <triumphant shout> had to have depression! Small problem ... my contemporaneous notes indicated I had far greater problems than mere fatigue. I offered to stake my notary commission (which required an extensive background check for character and honesty) on the accuracy of my own notes, and friends verified that they had observed some of the objective symptoms I noted, whereas they had never seen or heard anything that led them to believe I was depressed.
All my friends have received 3 AM e-mails that prove that I may collapse into bed at 5 or 6 PM, but I do not sleep straight through to 7 or 8 AM as the doctor's notes indicate. Until I got some fairly strong sleeping pills, I was sleeping in 1-2 hour increments, not 15 hours at a time.
It's the things that are left out that are the most important! And the political version of this illness leaves out the initial virus, leaves out the proof for 20+ years of brain lesions, leaves out the viral damage to the heart muscle, leaves out that all the symptoms are not a "random collection of every symptom known to man" but are specifically those which can be caused by a Central Nervous System dysfunction.
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