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XMRV: International Letter Writing Day 2

Posted Jul 18 2010 3:53pm 2 Comments
On Monday 19th July we will take up the pen and fight with all our might. Fight until our voices are heard.

Join us for another INTERNATIONAL LETTER WRITING DAY. This is your chance to get involved and let the world know about XMRV. Use your voice and let the international press know about the unprecedented government censorship of important scientific data. Write to Kathleen Sebelius from the Department of Health and Human Services (HHS) and demand that the agency release the data immediately (email: Kathleen.Sebelius at

So far, the XMRV scandal has been under-reported. If we don't get the information to the appropriate people this important study will be buried. It may be hard to believe, but the very same thing happened 18 years ago to a young researcher named Elaine DeFreitas, who also discovered a link between a retrovirus and ME/CFS. The CDC destroyed DeFreitas' chances of funding and the research languished.

Link to email addresses:!/topic.php?uid=112160662164471&topic=38
Letter Templates
Letter suitable for press:
Dear xxxx

A new human retrovirus with similar characteristics to HIV, called XMRV (Xenotropic murine leukemia virus-related virus) has recently been found in a considerable percentage of the blood cohorts of ME/CFS (Chronic Fatigue Syndrome) patients by the National Institute of Health and the Federal Drug Agency of the United States and in up to 7% of healthy blood cohorts (this amounts to 20 million infected Americans; as a comparison there are only 1 million AIDS sufferers in the US). In a move which displays the state of panic, Dr Harvey Alter's findings have been blocked on the eve of publication at the prestigious scientific journal PNAS by the CDC (Centers for Disease Control). Dr Harvey Alter's paper confirmed the findings of the Whittemore Peterson Institute, Cleveland Clinic and National Cancer Institute who first identified the connection between XMRV and ME/CFS in Science in October 2009 .

Dr Alter's paper noted that transmission of the retrovirus is probable. The findings of NIH and FDA paper were leaked by Dutch journalists on 22nd June:

The following links are to articles which outline the unprecedented government censorship of a peer-reviewed medical paper

If you knew the history of ME/CFS, you would sense a sinister feeling of déjà vu. Please watch this video which records the outbreaks of ME/CFS in Lake Tahoe and Lyndonville in 1985.

I ask that you please take the time to familiarise yourself with this potentially massive discovery (XMRV has also been affiliated with MS, autism and prostate cancer) and to make your readers aware of the underhand tactics employed by the US authorities.

Yours sincerely,


Please note that Dr. Harvey Alter is an award-winning scientist who was responsible for the discovery of Hepatitis C.
He is the chief of the infectious disease section and the associate director for research of the Department of Transfusion Medicine at the Warren Grant Magnuson Clinical Center in the National Institutes of Health (NIH). Among other prestigious awards he was conferred with the Distinguished Service Medal, the highest award accorded to civilians in the United States government public health service, and the 2000 Albert Lasker Award for Clinical Medical Research.

Letter suitable for government agencies:

To the Inspector General at HHS (or whomever)
I learned from the Wall Street Journal on 30th June and Nature News on 2nd July, that there is conflicting results between the CDC and the NIH's research regarding an association between XMRV and CFS, and that the NIH’s 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 NIH and the CC, 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 groundbreaking findings of a possible association between XMRV and CFS patients.

If it is in your power, please help release the hold on these results, and allow publication as and when it was intended. As a patient with CFS for xxxx years, I cannot help but feel this delay will grind progress on CFS to yet another halt. Please let the science keep it's momentum on this crucial subject without prejudice, and without delay.

Yours sincerely,


Comments (2)
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Sounds like a good idea to me, Alex. We're trying to organise more letter-writing events on our XMRV Press Releases facebook group. Please do join us there.

Best Wishes,


Hi, the issues are so huge with XMRV that I would suggest an ongoing letter writing day every month. The 8th. of the month would be good, in recognition of the date in which the Lombardi et. al. paper was first published in Science Express.


Alex Young

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