Advocacy issues in chronic fatigue syndrome (ME/CFS)
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 Researcher of the Year analysis doesn’t just take research into account; it also includes their outreach into the patient community and their impact on how the research field is functioning. This year the Researcher of the Year was an easy choice. Dr. Vernon excelled in all three categories in 2008. (As she did in 2009.
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 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
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 Its nice to see chronic fatigue syndrome (ME/CFS) well represented on the national stage. Dr. Donnica Moore was comfortable and poised on Good Morning America as she clearly enunciated many of the major aspects of ME/CFS. Early on she focused on post-exertional malaise – something we really need to get across. The inevitable depression question didn’t
ContinuePosted by Cort Johnson The CFIDS Association of America generated a shockwave when Kim McCleary stood up at the federal advisory committees November 2008 meeting and accused the CDC’s CFS research program of wasting millions of dollars and engaging in poor research and said the program’s leader, Dr. Reeves had to go. The CAA would go on to slam the
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
Continue