"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Wednesday, June 30, 2010

Stalling 101: A CDC Primer

And so it begins...

Seems the cdc for some inconceivable reason (inorite), was unable to find XMRV in CFS patients according the the WSJ:

Chronic-Fatigue Link to Virus Disputed

Go figure.

"... Scientists at the Food and Drug Administration and the National Institutes of Health, including NIH infectious-disease specialist Harvey Alter, recently finished research that came to a conclusion similar to that of the Science paper—that XMRV, or xenotropic murine leukemia virus-related virus, is found in the blood of chronic-fatigue syndrome patients."

I've been waiting for this; and I think it's safe to say, this was expected. I knew the CDC would find as many ways as possible to halt, or stall as long as possible, the findings of associations between XMRV and CFS.

"Separately, scientists at the CDC, led by microbiologist William Switzer, concluded in a paper in another journal, Retrovirology, that they couldn't find XMRV in the blood of people with chronic-fatigue syndrome, according to people familiar with the situation. "

"...In an email between scientists familiar with the situation, viewed by the Wall Street Journal, a researcher said the two teams were asked to put their papers on hold because senior public-health officials wanted to see consensus—or at least an explanation of how and why the papers reached different conclusions, said the people familiar with the situation."

God forbid the CDC and the NIH didn't ride tandem from the get-go on this. Not surprised? Neither am I. So yeah, expect lots of waiting until 'consensus' is obtained. Can we please get someone with clout to fgure out Who lobbied for the delay of the paper(s)(Both the CDC and teh FDA/NIH were delayed according to WSJ), and then Who gave the go-ahead to publish the CDC paper that was released today (EDIT July 13,2010: Thank You Hillary!: Rubber Meets Road)? The plot sickens...

In the meantime? Please email AND snailmail (Since I don't trust emails ever find who they should in .gov) the following letter:

To the Inspector General at HHS (or whomever):

I learned from the Wall Street Journal on June 30,2010, that there is conflicting results between the CDC and the NIH's research regarding an association between XMRV and CFS, and that both studies results are not being published as intended.

While I am concerned about continuity between the CDC and NIH, I do not think it requires withholding of the results. I clearly understand that the association between CFS and XMRV is in its' early replication phase by other organizations besides the WPI, the National Cancer Institute and the Cleveland Clinic, who originally authored the XMRV/CFS association in Science, October 9,2009, and I find it very unfortunate that the CDC and NIH did not work in tandem on the related studies.  

Both results being published would only bring more focus on which study was possibly accurate, and/or inaccurate depending upon how each study was conducted, accordingly given possibly different assays and cohort methodologies. Accurate and inaccurate results are both crucial to understand how to proceed with the ground breaking findings of an possible association between XMRV and CFS patients.

If it is in your power, please help release the hold on these studies, and allow publication as and when it was intended. As a patient with CFS for 17 years, I cannot help but feel this delay will grind progress on CFS to yet another halt (Please modify to represent your personal CFS experience). Please let the science keep it's momentum on this crucial subject without prejudice, and without delay.
Kathleen Sebelius
The U.S. Department of Health and Human Services
200 Independence Avenue, S.W
Washington, D.C. 20201

Office of the Surgeon General
5600 Fishers Lane
Room 18-66
Rockville, MD 20857
Telephone: 301-443-4000
Fax: 301-443-3574

Dr. Wanda K. Jones
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Office of Public Health and Science
U.S. Department of Health and Human Services

Hubert H. Humphrey Building, Room 712E
200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)

(202) 401-4005 (FAX)

These are found on the CDC's website as of today. I used the vanilla address for lack of specifics found there (bld numbers, mailstops etc). I'm betting they can find them.

Rima Khabbaz, M.D.
Acting Deputy Director for Infectious Diseases
1600 Clifton Rd.
Atlanta, GA 30329

Thomas Hearn, PHD
Acting Director, National Center for Emerging and Zoonotic Infectious Diseases
Centers for Disease Control and Prevention
1600 Clifton Rd.
Atlanta, GA 30333

Anne Schuchat, MD (RADM, USPHS)
Assistant Surgeon General, United States Public Health Service (USPHS)
Director, National Center for Immunization and Respiratory Diseases (NCIRD)
Centers for Disease Control and Prevention
1600 Clifton Rd.
Atlanta, GA 30333

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  1. I started a petition!