07 July 2010

The Echos of Silencing Science

Science is beginning to verify the fact that my body isn't so well.  That my DNA, and that of a couple of my family members, is possibly ravaged by a retrovirus.  Politics is telling me that I needn't waste my time on such nonsense, and that this isn't an issue I should dwell upon.

On 06 July, a blog entry titled FDA/NIH Paper in Limbo; Patients Unite, authored by freelance science reporter Mindy Kitei on her blogsite CFS Central, (see link on right of screen), is published, suggesting that the NIH/FDA paper was in fact halted by high level government officials in the Department of Health and Human Services (Kitei, M., 2010).

Kitei. M., (2010), reports that Dr Steve Monroe of the High Consequence Pathogens and Pathology at the CDC stated that "When CDC, FDA, and NIH learned that separate studies had been conducted with differing results, a collective decision was made to try and account for these differences.”.  Marcus, A. D., (2010) reported similarly on the halted papers, quoting editor-in-chief Kuan-Teh Jeang, of the journal Retrovirology, as saying "My understanding was HHS [Department of Health and Human Services] wanted to get it straightened out. Both reports are from different branches of the government," (Marcus, A. D., 2010).  

Since then, however, it hes been reported by Kitei. M., (2010), that the CDC is responsible for halting the NIH/FDA Paper.   'Sources have told CFS Central that higher-ups in the Department of Health and Human Services (HHS) made the ultimate decision to hold up the study.' Kitei. M., (2010).  Kitei. M., (2010) goes on to state that the FDA/NIH paper was in final proofs when it was halted.

This, no doubt, will cause much angst among the ME/CFS community of patients and advocates, as it had been leaked that the FDA/NIH paper had found a positive correlation between ME/CFS and XMRV, and further addressed the issue of public blood supply infection.  The positive findings of the NIH/FDA paper will be some of the first which verify the findings of the Whittemore Peterson Institute.

I'm not sure about anyone else, but I prefer the sound of science, to politics.

References:

Kitei. M., (2010).  FDA/NIH Paper in Limbo; Patients Unite. Retrieved 08 July 2010 from http://www.cfscentral.com/2010/07/fdanih-paper-in-limbo-patients-unite.html

Marcus, A D., (2010). Chronic Fatigue Link To Virus Disputed. Retrieved 05 July from http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj#articleTabs%3Darticle

Marcus, A D., (2010).  CDC Team’s XMRV-Chronic Fatigue Syndrome Paper Is Out.   Retrieved 05 July from http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out/

4 comments:

  1. Emma-Kate, I certainly favor science over politics, but how do we know which science since none of us have seen the studies?!? Science is science, but it's like you said, publication is part and parcel of that science. Scientists must evaluate and, if good science, validate findings of published studies. I have the same problem that I've always had...we are getting upset because a study did not find the connection between XMRV and CFIDS/ME. The U. S. agencies involved need to come clean with our community! Thanks to your blog, I am understanding this issue more. Thank you! (This is Nance, one of your followers!) :)

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  2. Sign this petition @

    http://healthcare.change.org/petitions/view/xmrv_allow_science_to_progress

    I am writing today to request your action on a public health concern. Recently a link has been found to the debilitating disease Chronic Fatigue Syndrome (CFS), and a retrovirus, X-MRV. X-MRV has also been implicated by recent research in the development of aggressive prostate cancer. Since the original findings published in the prestigious journal Science, several groups have produced conflicting results. The Wall Street Journal has reported however, that the NIH and FDA were able to confirm the findings (underneath the direction of the NIH scientist who discovered the Hepatitis C virus, Harvey Alter). The Wall Street Journal has also reported the studies are being WITHHELD and subjected to additional tests due to the failure of the CDC to come to similar conclusions. No statement has been made as to the extent or nature of these additional procedures and tests.

    Tell the DHHS to allow the NIH and FDA to publish their papers without undue procedures and hurdles. Preventing these papers from being published diminishes the trust of CFS Patient groups in the CDC and its willingness to deal honestly with this disease. To allow CFS patients and those with Prostate Cancer the best hope of fighting their illness, we must have the best scientific information that our government is capable of producing. Allow the findings to be released with all speed and tell the DHHS to stop playing politics with science.

    Thank You,

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  3. I am not upset because a study failed to find a connection between XMRV and ME/CFS.

    No, I am upset because our government (Dept of HHS) has withheld a study which was already IN PRESS at PNAS. And it STILL has not been published. How can anyone say that the truth about XMRV will come out if our government is WITHHOLDING publication of a major paper?

    They have long since released the CDC's flawed study. Isn't it about time they released the NIH/FDA (Alter) paper for publication?

    Patricia Carter
    www.mecfsforums.com

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