XMRV has most certainly brought ME/CFS to the forefront as far as the media is concerned. Even though we are not getting very far with XMRV being found in studies and progress in that area, all of the media attention is putting CFS in the spotlight. Now because of the recent XMRV link to ME/CFS being disputed by the CDC, and the delay in releasing the study information, the CFS community is in an uproar and rightly so. According to the New York Times article published today:
Researchers at the National Institutes of Health and the Food and Drug Administration, citing a need to re-evaluate their data, have delayed publication of a new study believed to provide evidence of a link between chronic fatigue syndrome and a little-known retrovirus.
The study, already peer-reviewed, was supposed to appear in the prestigious Proceedings of the National Academy of Sciences. The delay has sparked an outcry on blogs and social networking sites among chronic fatigue patients, who are desperate for answers about their debilitating illness and fear that important scientific data are being suppressed.
The CFS community has been waiting for over 20 years to be taken seriously by the CDC and here we are again – on the edge of finding a possible cause to our illness, and the CDC has conveniently found no link to XMRV. Yes, there have been other studies done as well that haven’t found links either but no one is replicating the original study that found the virus in the majority of the CFS patients tested. What is the problem? It doesn’t take a rocket scientist to figure out what is going on here. The CDC has never taken our illness seriously and why would they start now?
The New York Times did a great job with their article today, Delay in Release of Study on Chronic Fatigue Syndrome Prompts an Outcry, so read through it all, go to the links in the article and check out some of the other blogs and sites it refers to. Let me know what you think!
Martin White says
We need to continue to get our information into the major media and not just blogs, etc. NYT is good. Washington Post and other major magazines would be great. Also need to get on CNN and all the other major TV shows to really spread the word on XMRV, CFIDS and the CDC scandal that has taken place now for over 30 years and has put millions and millions of people at risk for possible CFIDS, cancers (leukemia, lymphoma) and other diseases associated with this and the Defreitas Retrovirus.
Keep emailing the NIH, CDC, FDA and Congress. Hit the media and keep hitting them with solid info and background. Cite http://www.oslersweb.com for good CDC/CFS background. Keep at it or we stay stuck in the mid 1980’s as the CDC would like to keep us there – reasons unknown for now. Later, after Congressional investigation into WHY the CDC kept this covered up will explain all.