Wednesday, October 14, 2009

Dear Sirs, I am sick....

According to Hillary Johnson, author of 'Osler's Web', the following
'letter' was written by a CDC staffer and was placed on a bulletin
board inside CDC for several years before being taken down due to
unwanted attention from a journalist. It provides a fair amount of
illumination on the Centers for Disease Control's attitude towards CFS
from the very beginning.

(original scanned document located at- )


                                     October 5, 1986

Center of Diseased Comptrollers
Bldg 6, Rm 127
Atlanta, GA 30333

Dear Sirs:

I am SICK. I saw your ad in the L.A. Times, and need your help. I am
so tired it took me 6 days to dictate this letter to my secretary.
Please send all available information, and I mean ALL, about CEBV,
ESRD, USAA, and Japanese Bee Encephalitis, PDQ. Also please send a
complete list of all physician's in the U.S., Canada, Mexico, the
Caribbean, South America, Europe, Africa, Asia (including the Indian
and Southeast Asian subcontinents), Greenland, Antarctica, and the
Marianas Islands who work with the above agents, along with their
addresses, telephone #'s, height, weight, hair and eye color, social
security #, number of living relatives, favorite colors, and how much
they charge (the more expensive, the better).

I would also like a list of recommended treatments for the above
conditions, in descending order of trendiness, including acyclovir,
gamma globulin, WXYZ-2, 3DPG, Vitamins A, B-1 thru 12, C, D, E, F, G,
H, I, J, K, L, M, N, O, P, and Q, Zinc, Cadmium, Cobolt, Neodymium,
Ytterbium, lecithin, morithin, lessismorithin, sensory deprivation,
walking on hot coals, alternating sensory deprivation and walking on
hot coals, purified fruit-bat guano injections, and bedrest. I have
already tried Valium, Lithium, Haldol, and thorazine, but they only
work when I take them.

Please, also inform me about how to get social security and workmen's
compensation for the above diseases. I have had them for over 40 years
now, and I am only 29 years old.

Thanks for all your help.

                                  I.M. Zappode

                                  2431 Western Blot

                                  Wornout, CA 98765

* * *
Would you want researchers with THAT attitude looking into YOUR disease?  If the researchers don't believe in it, are they really going to give it their all?
And the answer, for the past 25 years, has been No.  CDC staff made a number of jokes and snide remarks about patients being simply lazy or depressed or menopausal (disregarding the fact that a fair percentage were men and children who couldn't possibly be menopausal).
When Elaine De Freitas, a patient-funded researcher, found a retrovirus, CDC repeatedly claimed they couldn't replicate her research.  She repeatedly tried to help them replicate it, even sending them properly-mixed solutions.  Finally, she discovered that after telling them specifically that the blood samples she was sending should not be frozen because this would destroy the virus ... the blood samples were being stored in the freezer for several weeks!  It became apparent that CDC didn't WANT to find anything.
If they'd found something, they would have had to admit that their leader was wrong in attributing the problem to psychiatric reasons.  When Straus left the agency, he hand-picked Reeves to be his successor, and Reeves, too, has continued to attribute the problem to psychiatric factors, despite mounting evidence of a biologic basis.  The level of denial exhibited by both Straus and Reeves hasn't been seen since the Flat Earth Society!  Like Straus, Reeves will go to his grave insisting that he's right, we're just lazy and crazy, that the biological basis patients claim has never been proven to his satisfaction.  It's like trying to argue with a brick wall ... though you might be more successful with a brick wall, because you can always bring in a wrecking ball and knock it out of the way!
This is the abuse to which patients have been subjected for a quarter-century by the very people who are supposed to help them.

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