Posted by Cort Johnson The odds have always been against the researchers with the guts or commitment to take ME/CFS on. With it’s unfortunate name, vague definition and complicated, multi-systemic nature it’s gotten little respect and even less funding. Everybody knows the statistics – last in the NIH in funding….$20 billion in economic losses and easily, easily the lowest dollar
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XMRV UK CFS Study II: Dr. Vernon’s Analysis
Posted by Cort Johnson As expected Dr. Vernon, the Scientific Director of the CFIDS Association, delivered a rather comprehensive overview of the latest XMRV study in the Retrovirology journal. Dr. Vernon spent some time making clear who just who did this study; it was basically the best of UK retroviral researchers (one ‘world-renowned’) plus top ME/CFS UK researchers with long
ContinueXMRV: the Urgency of Money
Posted by Cort Johnson In a recent article on RJC.com Dr. Mikovits came out swinging. Fights between researchers can get nasty but its probably rare that they veer into this kind of territory. After suggesting that the Imperial College group purposefully tried not to find the virus (!) Dr. Mikovits referred to the fact that the paper was paid for,
ContinueThe Imperial College XMRV Replication Study: XMRV in Trouble….or Not?
Posted by Cort Johnson And if you see some negative papers coming out, don’t be discouraged. It’s going to happen. There are going to be some negative papers. People really jump to do this. And the method is not that easy and getting the right bits and pieces you need together (is not easy)” Dr. Nancy Klimas The Brits Smack XMRV…Or
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2009 In Review
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
ContinueA Dark Vision
Posted 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 .
ContinuePhoenix Rising Researcher of the Year Pt. 1
Posted 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.
ContinueResearcher of the Year (08) Part II: A Bold Commitment Plus XMRV and the CAA
Posted by Cort Johnson A Bold Effort Collaboration – Dr. Vernon believes increased collaboration will be essential for our research community’s success. She knows the power collaboration can unleash. The Pharmacogenomics projects she lead at the CDC – which ended up thrusting ME/CFS into the research spotlight and helped triggered the National Press Conference – was the result of a
ContinueXMRV in the Spotlight
Posted by Cort Johnson XMRV was next up at the mike at the CFSAC meeting. First Dr. Peterson went over the published research one more time. Hearing it again simply reinforced what an extraordinary discovery XMRV may be. His presentation was, in some ways, though, really just a prelude to Dr. Coffin’s presentation. The co-author of the major text in
Continue“Solving CFS’ and Stepping Into The Digital Age
Posted by Cort Johnson The CFID’s is coming of age in the digital age. SolveCFS, a new website, is a nice step forward for the CFID’s Association. If you haven’t looked the CFID’s Association has been on a roll lately. Check these projects of the past few years: A sucessfull research initiative They hired a well known researcher, Suzanne Vernon,
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
ContinueGood Morning America Gets It Right!
Posted 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
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