A petition urging HHS permission to publish NIH & FDA XMRV article(s)

Change.org is “an online hub for social change that runs online communities for major causes.” Currently its Health Care causes community features a petition that ME/CFS/FM and prostate cancer patients & advocates may sign, for direction to elected officials in the House & Senate and the FDA, NIH, CDC, etc., calling on them to:

“Direct the DHHS to allow the NIH and FDA to publish their papers. 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 review the petition, go to “XMRV: Allow Science to Progress” at
http://healthcare.change.org/petitions/view/xmrv_allow_science_to_progress. If you decide to sign, you may check a box to ensure that your name will be withheld on the Internet. (And while you’re there, read the eloquent reader comments as well.)

Note: For background on the urgency of the situation, see ONE WEEK LATER: Outrage Over Suppression of FDA-NIH’s Positive Paper Despite July 1 Publication of Negative CDC Paper.” See also the Wall Street Journal article published June 30 – “Chronic Fatigue [Syndrome] Link to Virus Disputed” by Amy Dockser Marcus.

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4 thoughts on “A petition urging HHS permission to publish NIH & FDA XMRV article(s)”

  1. gapsych says:

    Do we really want the HSS to publish the studies now when they might not be valid?

    Sometimes in science, studies need to be reviewed, though not usually this late.

    Hopefully they are double checking to make sure the studies are valid.

    At this time, I think a petition is premature until we get more information.

  2. IanH says:

    The research should be published whether – or + findings are being reported. The only thing which should stop publication is poor scientific method casting doubt on reliability or validity.

  3. caledonia says:

    The studies have already been peer reviewed and were ready to be published. Of course the studies are valid. The government is holding them back for political, not scientific reasons.

  4. oerganix says:

    gapsyche, those papers have already been reviewed. If we don’t demand they be published, there won’t BE any more information. Perhaps you’re not aware that CDC has been trying to make out that CFS/ME is a mental disorder for nearly 30 years and has not spent their meager allotment of research money for CFS on finding the biomedical cause(s). They also arbitrarily changed the definition so it now includes lots of depressed and anxious people who do not have the biomarkers of CFS, thus diluting the cohort to the point it is meaningless.

    Patients familiar with this now call the CDCs brand of psuedo-CFS “Reeves Disease”. Even with this diluted cohort, the CDC should have found XMRV in a smaller percentage of healthy controls, as have other researchers in Japan and Germany. Finding NO XMRV is a signal that they couldn’t find it, not that it isn’t there.

    Since publishing in Science mag, the Lombardi group has continued to research XMRV and has now found it in 95% of CFS patients, in a cohort of international patients.

    Immediately after their research was published, head of CDC Reeves told the NYT he didn’t expect to find it. And their study was completed months ago, so they have had plenty of time to go back and review why they didn’t find what other real researchers have found. (The European Failure to Find studies were done by and for the psychitrists who have control over the ME/CFS field, so their quick and dirty studies were intended to squelch interest in XMRV as a possible cause.)

    This is politics. It is not a scientific debate. The CDC is trying to disappear CFS once again, as they have done for so long. In the internet age, they won’t get away with it this time.

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