Posted by Cort Johnson In a startling announcement on 3pm on Friday the CFIDS Association of America reported that the man who’d vowed to outlast everyone, Dr. Willam Reeves of the CDC, was out and that Dr. Elizabeth Unger was temporarily taking over controls of the CDC’s CFS Research program. Certainly, no one expected this. At the end of the
Continue Posted by Cort Johnson EVENTS Biggest Event – what else? XMRV takes the spotlight as no research finding has before, retrovirologists across the world clamor for samples, worry mounts about a tainted blood supply, Hilary Johnson blows into the New York Times Op Ed section, and patients gasp and cross their fingers in hopes that it will all work out. See XMRV
ContinuePosted by Cort Johnson Hilary Johnson, beloved CDC headhunter is raking the CFIDS Association over the coals again. Once again she’s taking no prisoners. In her last blog on the CAA she called the organization the Bechtel of the CFS community and accused them of inciting a ‘pogrom’. In this blog she proclaims CAA is the CDC and vice versa .
ContinuePosted by Cort Johnson The CDC Problem – The CDC attempted to explain away the patients explosion of frustration at their Chronic Fatigue Syndrome (ME/CFS) program as the result of a well organized plot by the CFID’s Association of America. They haven’t yet come up with a good explanation for the avalanche of criticism visited upon them by the professional community. Instead of responding to
ContinuePosted 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
ContinuePosted 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
ContinuePosted 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-
ContinuePosted 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
ContinuePosted 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
ContinuePosted 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
ContinuePosted 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
ContinuePosted 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
Continue