Action on the NIH/FDA and CDC Papers Scandal - What you can do

Updated July 6th, 2010 Stay Tuned for more updates

Patients with ME/CFS are often too sick to leave their homes or their beds so it is only natural that when news was released that BOTH the NIH/FDA paper and the CDC paper were being held from publication there was immediate response across the internet to "let the papers go".

However, the CDC paper was published in Retrovirology on July 1st, and now all efforts are to have PNAS release the unedited version of Dr. Harvey Alter's NIH/FDA paper which was reported to confirm the findings of the WPI that XMRV and ME/CFS are associated. You can follow chronology of the NIH/FDA and CDC papers Scandal by clicking here.

Action- What you can do

Petition started by Judson Wallace for all U.S. residents to sign.

"Recently a link has been found to the debilitating disease Chronic Fatigue Syndrome (CFS), and a retrovirus, X-MRV. 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 scientist who discovered the Hepatitis C virus, Harvey Alter). The Wall Street Journal has also reported the studies (already picked for publication in the Proceedings of the National Academy of Sciences) are being WITHHELD, as the CDC was unable to duplicate the findings as well."

Write Letters - Blogger Toadlily provides a letter to write to government agencies concerning the interference of the government in the publication of the NIH/FDA paper and the CDC paper. She also provides addresses of who to send the letters to. A valuable resource for patients and the public to act for change.

XMRV Writing Campaign  Patients are organizing to to write letters to the media and their governments. This link contains writing templates and  email addresses for you to contact.

1. Change the Subject line so it won't be picked up by spam filter
2. Be respectful in the letters you write. To the media, put a face on the story. Describe cases of  ME/CFS, describe what it is like waiting for a validated XMRV test, mention the outrage of government suppression of science. To the government, concentrate on facts and the horror at the suppression of science. Also emphasize, government exists to serve you. Public servants are accountable to the public.

The Profile Pic Campaign
This profile pic is free for distribution. Activists are asking patients and the public to upload this profile pic up to their facebook, twitter and blogs in order to draw attention to XMRV.The hope is that the more it spreads that people will begin to ask the question.

A video made to inform the public about the danger of XMRV and it's link to ME/CFS asking that the both papers be published. This is a video you can pass on though it would be correct to say "CDC paper published, NIH/FDA paper is still being held". You can pass this video on through the internet and inform the public about XMRV and that the government is interfering in the publication of results regarding its association to ME/CFS

We hope that demonstrations and leaflets will follow at bloodbanks and hospitals by the families and friends of those who are ill, and those who are still well enough to demonstrate. Meanwhile, the housebound and bedbound will continue to use the internet to put pressure on the government and public to release the paper. 

(Actions taken by the ME/CFS community to see the NIH/FDA paper published will be tracked here)

1 comment:

  1. Andrea,

    Your tireless efforts for the ME/CFS cause are awe-inspiring. I signed the petition, posted the link to it on my Facebook wall, posted the XMRV video re: the release/withholding of papers, etc.