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Why has CFS research engendered so little support? Cort Johnson's presentation to the NIH at the recent CFS Advisory Committee meeting in Washington

  [ 125 votes ]   [ 2 Comments ] • November 29, 2007

At the CFS Advisory Committee (CFSAC) report to the NIH on November 28 and 29, ME/CFS research reporter Cort Johnson, founder of the Phoenix Rising website, commented on the long term decline of the NIH's CFS Research Program, characterizing it as "The Do Nothing Program."

"...federal officials came out in impressive force during the recent Grantsmanship Workshop for ME/CFS - and ME/CFS advocates applauded their knowledge and concern," Cort stated. "So we have a conundrum. How has it happened that these knowledgeable and concerned people have presided over the worst decline in ME/CFS research funding in its history? Why are one or two or three studies funded a year in a disease that affects millions acceptable to the NIH?"

To read the full text of his comments and suggestions, go to the Phoenix Rising website at

Note: The CFSAC is a group of experts charged with advising the Secretary of the U.S. Department of Health & Human Services on ME/CFS-related issues. Each of the Committee's occasional presentations to HHS also includes brief comments from the public, such as this one. The CFIDS Association of America has published a summary of the meeting's proceedings.

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Article Comments Post a Comment

NIH CDC Class Action ?
Posted by: shartau
Dec 6, 2007
I have some trouble understanding why no class action law suit has been filed. First the CDC team sees no patients in Incline Village, Then funds were being deverted by the NIH Now again this problem seems is being ignored. WTHeck. ? The squuky wheel OR "The Band Plays On" Again. Sick And Tired of being Sick And Tired And Ignored. Do we have to strap on C4. Now that I have your attention !
Reply Reply

No C4- But a How To Organize a Class Action Suit sounds nice
Posted by: sscape
Dec 26, 2007
I would like to know how you organize a Class Action Suit. Really. I've wondered why there isn't one for a few years now.
Reply Reply
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