Posted by Cort Johnson The State of the Knowledge Workshop is here and it’s a good one. A hearty congratulations to Pat Fero, Mary Schweitzer, Ken Friedman, Dr. Jason, Dr. Klimas, Dr. Vernon and Dennis Mangan for what they’ve produced. The last NIH Workshop/Conference of this sort was the Neuroimmune Conference of eight years ago and was filled with NIH
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The NIH and ME/CFS (Chronic fatigue syndrome) – research funding
More Community Outreach from the NIH: Mangan Creates Listserv to Communicate with ME/CFS Community
Posted by Cort Johnson Talk about reaching out and communicatingup up up up up up up up up. Dennis Mangan, the leader of the CFS Working Group at the NIH, has set up a ListServe that will automatically send you information from the NIH on what their ME/CFS activities. Bit by bit Dennis is transforming the way the NIH operates
ContinueThe Stars Begin to Align at the NIH: A CFS Review Panel…. For CFS!
Posted by Cort Johnson A Head-Splitter – Of all the problems at the NIH the makeup of the panel that reviews and scores ME/CFS grants – called the CFS SEP – may have been the most head-splittingly frustrating. No subject is guaranteed to raise blood pressure levels more quickly and perhaps, no other group has been more effective at throttling
ContinueNo Money For ME/CFS? Think Again
Posted by Cort Johnson Oct 13 Testimony to the CFSAC Whenever the CFS community asks for funding we always hear are that ‘money is tight’ – too tight to help out with CFS – as if doing so would somehow break the budget. The truth is there’s always money for the NIH to do what it wants to do. Every
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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
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
ContinueCFSAC Pt I – The Art of Evasion
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
ContinueTeflon 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
ContinueThe NIH On the Clock Pt. III: It’s Raining Money
Posted by Cort Johnson That’s right – in the midst of the greatest economic contraction since the depression the NIH has, all of sudden, found itself in the greatest single expansion in its history. How and why demonstrates how much influence one Senator can have. Desperate to get Arlen Spectors vote on the stimulus package, the Obama administion acceded to
ContinueOn the Clock Pt II: The Winners and Losers in the NIH Money Game
Posted by Cort Johnson Dr. Hanna at the NIH has repeatedly said that given the tight budgetary times there’s just no money for ME/CFS. A look at NIH funding across the past few years suggests, however, there’s more to the issue than she suggests. Underneath the seemingly placid surface of a stable budget a fierce fight goes on every year
ContinueOn the Clock Pt I: the NIH and ME/CFS (chronic fatigue syndrome)
Posted by Cort Johnson We know the ME/CFS research program at the CDC is in big trouble but what about its cousin at the NIH? Three years ago the CFIDS Association of America was praising the CDC’s chronic fatigue syndrome program and slamming – in a federal document – the horrible performance of the NIH’s ME/CFS program. The only thing
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