"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Friday, July 9, 2010

The Paper Chase

This is an ongoing edited daily post, as more and more journalists, bloggers and patient advocacy organizations learn even more regarding the really really shocking news in late June, that the CDC and the NIH/FDA papers would be 'held' back from publication (Then as if by magic, the CDC's paper Was published the next day). All those letters, emails and phone calls may have won the day for us, but time will tell, and we cannot sit back and think it's over. We all know what the CDC is scientifically Incapable of, but politically Very capable of (Hopefully for not much longer).  Please continue to write! See Stalling 101: A CDC Primer for example of a letter to send, with some .gov contacts provided at the end. There are also more .gov contacts listed under the tab above entitled CFS .gov Contact Information.


Bloggers and Advocacy organizations continue to respond and update us since Friday, July 9th, 2010. Thank God for all of you, your making a huge difference.


UPDATES:


Phoenix Rising Dr. J Interview by Cort


A Different Kind of XMRV?


QUOTE: "“In my view the CDC paper should not have been published without a proper positive control, eg patient samples known to contain XMRV. If I had reviewed the CDC paper that's what I would have asked for.” " -- Dr. Racaniello


ENDUPDATES


Hillary Johnson's Rubber meets Road


Hillary Johnson's You Can't Fix Stupid which has one of the best quotes I have seen regarding the CDC's published paper in Retrovirology:


"To be fair to them, in their paper they do admit to most of the reasons their study is rubbish."


Thanks for that whomever was quoted from Phoenix Rising. I am still giggling!


COWARDLY ACTS and EVERYDAY REBELLIONS


The Big Squeeze


XMRV Link to CFS Accelerates Scientific and Media Interest




To sum it all up (But please at least read one of the above a day if you can manage it), Dr. ALter's XMRV CFS paper, according to all the above, may be published within a few weeks uncensored in PNAS.



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