Posted by Cort Johnson It was as if someone had transported the CFSAC committee to a different planet. Down from their small perch on at top of the building into the main lobby with the banks of lights shining down and three cameramen following their every move one wondered if this might be what the future looks like. The people
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Teflon Woman
Posted by Cort Johnson With her smile and her ingratiating matter Dr. Hanna is the NIH’s Teflon woman for ME/CFS. As Dr. Reeves punches up his next dazzling 20 minute PowerPoint presentation Dr. Hanna throws her few tidbits into the mix and shuts up. It’s remarkable how little interest there has been in what is arguably the most important federal
ContinueThe Alpha Dog
Posted by Cort Johnson Tantalized by the opportunity to make a difference the ME/CFS community let loose on the CDC over the past year. To its credit the CDC’s review process allowed for that. Missing the Forest for the Tree – The CDC, however, is not the main game in town – they’re not the alpha dog we vitally need
ContinueCFSAC Nominations in Play
Posted by Cort Johnson The CFSAC is the federal advisory committee on chronic fatigue syndrome. It advises the Secretary of Health on the federal response to ME/CFS including research, treatment and disability. Among the agencies it interacts with are the Centers for Disease Control, the National Institutes of Health and the Social Security Administration. FIve slots are open, one of
ContinueCDC Grows MORE Isolated
Posted by Cort Johnson It’s seems that the CDC has figured this disease out. How else to explain their absence at the 3-day CAA/NIH sponsored brainstorming session recently held at Cold Harbor (“From Infection to Neurometabolism: a Nexus for CFS”). Thirty researchers from across the US and Canada were there but not one showed up from the biggest CFS team-
ContinueCDC Quickly Breaks First Promise
Posted by Cort Johnson CDC/CFSAC BLOGS #2 International Workshop – Clinical Management of CFS The aim of this workshop (to be held summer 2009) is to establish a collaborative international consortium of investigators who will present and discuss evidence- and practice-based findings related to the treatment, and management of CFS. CDC’s Five Year Strategic Draft Plan – May 2009
ContinueThe Wave Begins? Swine Flu, ME/CFS and the CDC
Posted by Cort Johnson THE CDC/CFSAC BLOGS #1 Dr. Ken Friedman, board member of the IACFS/ME, just reported the first documented case of a person coming down with chronic fatigue syndrome (ME/CFS) as a result of getting the swine flu virus. This is what he said: Regrettably I must inform you that the first case of post-swine flu CFS has
ContinueLooking Back – At the CFID’s Association
Posted by Cort Johnson John Herd’s recent post on the past and future of ME/CFS advocacy provided a welcome change in tone from many of the strident posts we’ve seen lately and provided much room for thought. An important part of the post, however, was more of the same; while the post’s tone was mild the post itself too often
ContinueMy CDC
Posted by Cort Johnson My CDC team is very different from the present one. My CDC is a true leader in this field; my CDC is at the hub of the ME/CFS research effort, my CDC interacts extensively to benefit all. My CDC is a lean and mean and innovative team that we can all be proud of. What exactly
ContinueLast Chance at the CDC: the CFID’S Association’s Critique of the Five Year Plan
Posted by Cort Johnson <! Our opportunity to impact the CDC’s CFS research program ends after tomorrow (June 30th) The CFID’s Association of America has just released a critique of the five year review that’s longer than the draft plan itself. It’s a very impressive forward thinking document that’s also a great resource for building your own critique of the
ContinueRegistering Dismay: the CDC’s (Platinum) Patient Registry
Posted by Cort Johnson CFS has a long and twisted history with the CDC but perhaps nothing in it has been odder than the strange story of their Patient Registry. This project involves contacting physicians in a small county in rural Georgia (Bibb County, population 150,000) and having them refer patients to the CDC. The patient is then screened by telephone
ContinueKim McCleary On the CDC’s Five Year Plan
Posted by Cort Johnson “I was sitting there yesterday (during the CDC presentation) feeling like my head was going to blow off my shoulders” The CFID’s Association of America has been leading the way on the CDC review. Kim McCleary sits through every CFSAC meeting – not an easy task in that often mostly empty room – and takes notes.
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