"The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

[chrisb]

they kept stating that people misunderstood what they meant by CBT and GET,

If, as you say, they kept quoting PACE it must be assumed that what they meant was CBT and GET as defined within the PACE protocols. If they meant something other than that they should have defined their terms, and stated the evidence upon which they relied. That could clearly not have been PACE if their definition was changed.

 

[Charles B.]

It might coincide or overlap--but Kennedy is an anti-vaxxer from the left, not the right. that's a big difference. I don't know that your assumption about his audience is warranted. You're right about attitudes toward long Covid online, but I don't share your belief that these are Kennedy's audience. His audience would perhaps more likely believe long covid exists and is being caused mainly by vaccines.

Even if the audience is more favorably predisposed to left wing policies, contempt for ME/CFS is a longstanding point of bipartisan consensus. Again, I don’t see anyone listening in sprinting to the vanguard of ME advocacy. Nor do I see their views permeating any discussions on disease processes or treatment possibilities. Even if they did, they wouldn’t be any more pseudoscientific than some of the myriad theories surrounding ME over the years, and some of those aforementioned theories have been championed by folks involved with ME awareness/advocacy.

Just to be unequivocal on this, I don’t endorse any of the Kennedy positions in this space beyond his admission that patients in our community are routinely dismissed and excoriated by physicians. Hardly a heterodox stance.

 

[Sly Saint]

 

[Joni]

It's difficult to imagine that the CDC who had the fake letter Hillary Johnson copied down from a bulletin board in 1986 were very concerned about coming up with a fair and less misleading name.

This 1986 Fake CDC letter was discovered on a bulletin board at the CDC Viral Exanthems Branch during a visit by Hillary Johnson, while researching her book, Osler's Web. Johnson wrote on her now discontinued blog: "The letter below was displayed on a bulletin board during the late 1980s in the corridor of the division at the Centers for Disease Control that has been responsible for investigating "chronic fatigue syndrome" for the last twenty-five years. It was written by an anonymous CDC scientist. Larry Schonberger, the government epidemiologist who supervised the agency's Lake Tahoe investigation from his office in Atlanta, took it down--reluctantly--after one of his colleagues observed me copying its contents into my notebook. 'This will come back to haunt us,' the staffer told Schonberger. The actual letter came to me via the Freedom of Information Act."<a href="https://me-pedia.org/wiki/1986_Fake_CDC_letter#cite_note-1"><span>[</span>1<span>]</span></a><a href="https://me-pedia.org/wiki/1986_Fake_CDC_letter#cite_note-2"><span>[</span>2<span>]</span></a>

Letter​

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, CMV, HSV, VZV, HPV, HTLV II1/LAV/HIV, RSV, HAV, HBV, SV40, G-BS, RSV, RSVP, DRG's, 0MB, FDA, NIH, INH, NIMH, SPBSQSA, ABC's, D&C's, T&A's, S&M, ASPCA, UCLA, HMD's, AIDS, Ayds, USAID's, IUD's, BCP's, HBP, CHF, ESRD, USAA, and Japanese Bee Encephalitis, PDQ. Also please send a complete list of all physicians 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 I, 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-l thru 12, C, D, E, F, G, H, I, J, K, L, M, N, 0, P, and Q, Zinc, Cadmium, Cobalt, Neodymium, Ytterbium, lecithin, morithin, lessismorithin, sensory deprivations 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 benefits 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