From Winter 2009-2010 Forum

In September, the Centers for Disease Control and Prevention (CDC) posted on their website that they had "received just over 1,000 e-mails in response to a request to its 5-Year CFS Strategic Plan." Among others, they listed the National CFIDS Foundation as one who "provided comments". We immediately e-mailed the CDC's webmater since that was absolutely false. After a week of getting not having our name removed, Attorney Bernard Kansky sent the following letter to the CDC:

"Letter to William Reeves and the CDC
Re: CDC Posts Response to Input on its Draft 5 Year Plan, CFS Strategic Research Plan dated September 1, 2009
Dr. Dr. Reeves & Staff:

This office represents the National CFIDS Foundation, Inc., of Needham, MA, an organization referred to in a recent September 1, 2009 post from the CDC website as having commented on the 5-Year CFS Strategic Research Plan. The Officers and Directors of the National CFIDS Foundation, Inc. are unaware as to how and by whom this misleading and incorrect information was posted. The Officers and Directors of the National CFIDS Foundation, Inc., have offered no comment or input on the proposed 5-Year Strategic Research Plan nor does the Foundation have any plans to do so inasmuch as your Plan does not have anything to do with CFIDS or Myaglic Encephalomyelitis (ME).

The CDC states: (Chapter One, Course WB 1032 in their "Overview of CFS," that "There is no definition for CFIDS… the name Myalgic Encephalomyelitis (ME) was coined in the 1950's to clarify well-documented outbreaks of the disease: however ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." The National CFIDS Foundation, Inc. has always indicated that CFIDS is Myalgic Encephalomyelitis. In your own statement quoted above, ME/CFIDS has nothing to do with CFS according to the newest CDC's 2005 definition of CFS.

Therefore, on behalf of the National CFIDS Foundation, Inc., demand is hereby made that you, your staff and any and all persons and entities responsible for this gross, misleading and entirely incorrect allegation on your CDC website, immediately remove and retract any and all reference to the National CFIDS Foundation, Inc. as having provided any input on the 5-Year CFS Strategic Research Plan. The webmaster of the CDC's website was contacted over a week ago to remove the name of the organization but, aside from asking for a link, which was promptly provided, the webmaster has failed to remove the Foundation's name and has not bothered to contact the Foundation since.

It is now demanded that a correction be made immediately and that a copy of said correction be instantly forwarded to the National CFIDS Foundation, Inc.'s address at info@ncf-net.org. In addition, damand is hereby respectfully made for you and your staff to forthwith provide the identities of the person and/or entity or entities who or which caused this misleading and erroneous information about the National CFIDS Foundation, Inc. to be wrongfully published globally. It is expected that you and your staff will cause there to be an immediate retraction of the wrongful listing of the National CFIDS Foundation, Inc. as being one of several organizations which has provided (suggestion of positive) input to the CFS 5-Year Strategic Research Plan.

This alleged input is made even more egregious inasmuch as the National CFIDS Foundation, Inc.'s position is that the CFS 5-Year Strategic Research Plan does not address ME/CFIDS and is therefore more time and money wasted which cannot provide any treatment, cure or satisfactory management program for the ME/CFIDS patient community.

I trust that you and your staff have no misunderstanding as to your obligation to immediately and instantly correct this flagrant error and to thereby mitigate to the extent possible, the substantial damages caused by this erroneous posting."

Just days after receiving the letter, Sarah D. Wiley, the Associate Director for Policy at the National Center for Zoonotic, Vector-borne, and Enterec Diseases of the CDC, which is over the CDC's "CFS" group, called the NCF to explain that the NCF's name will be removed from that posting later that same day. The entire posting would be rewritten, she explained, since "internal policy was not followed" but she believed "it was an honest mistake" as many who e-mailed and contacted the CDC identified themselves as members of the NCF. The NCF had contacted the webmaster on September 9th. Hours after the CDC called on September 23rd, Scott Brown, who identified himself as working for the "CDC website inquiries", e-mailed that the correction would be made. Sarah Wiley called the mistake "inadvertant". By the next day, our name had been removed although the article was not rewritten.

Does the NCF think replacing William Reeves, M.D. will do any good? No. Someone higher is calling the shots. An example of how they've always viewed the work on this illness can be seen in this letter posted on a bulletin board of the Centers for Disease Control and Prevention for many years and seen by journalist and PWC/ME Hillary Johnson. Years after she saw it, the letter was still prominently displayed:

"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 III/LAV/HIV, RSV, HAV, HBV, SV40, G-BS, RSV, RSVP, DRG's, OMB, FDA, NIH, INH, NIMH, SPBSQSA, ABC's, D&C's, T&A's, S&M, ASPCA, UCLA, HMO'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 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. Zappod Wornout, CA 98765"

Is the NIH treatment of CFIDS/ME any better? It was the NIH who misnamed CFIDS/ME "Chronic Epstein-Barr Virus" and the CFS head honcho of the NIH, Dr. Steven Straus, suggested the name of "chronic fatigue syndrome" and was on the committee named by the CDC that renamed it after it was proven that "Epstein-Barr Virus" was merely a secondary virus or a trigger to the disease. In a recent issue of The Scientist, a Professor of Physiology and Edocrinology at the University of Baltimore wrote how the NIH is "no longer the best science-funding" agency as it had been for 60 years but, instead, changed in 2008 to "antithetical and counterproductive to achieving" good science (Vol 23, No 9) and actually accomplished to "downgrade the quality of science".

Sarah Wiley was told by the NCF that a much larger problem is that myalgic encephalomyelitis was taken off the CDC's diagnostic code and that ME was not even addressed by the CDC and that ME was what we were addressing. She agreed that was a "larger problem to address" but didn't suggest that it woud be addressed would anytime soon. The NCF does not plan to curtail any of their research funding waiting for the CDC to address ME.

[Ed. Note: Those in the CDC announcement that they said had given input to their plan: "International Association for Chronic Fatigue Syndrome, American Academy of Environmental Medicine… CFIDS Association of America, Connecticut CFIDS & FM Association, National Women's Health Network, rocky Mountain CFIDS/FMS Association, Phoenix Rising, Wisconsin ME/CFS Association, Share Care & Prayer, CFS Acts, National CFIDS Foundation, Invest in ME-UK". The National CFIDS Foundation's name has since been removed. Their 5-year plan has since been announced and, as expected, has nothing to do with CFIDS/ME.]