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-
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Looking 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
ContinueHeadhunter On the Prowl
Posted by Cort Johnson Hachet Woman – Hilary Johnson is doing what she does so well-she’s taking heads. She’s never been about ‘support’, she was an investigative journalist after all. Her metier has always been holding up a bogeyman and then cutting it’s head off. Born with a golden pen her darting, evocative and often voluptuous prose engulfed a community
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
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.
ContinueThe Roar Mounts: Professionals Call For New Leadership at CDC
Posted by Cort Johnson They came one after another. First came the call from IACFS/ME President Fred Friedberg. Their first recommendation – Dr. Reeves should go. Then came the CFSAC , after virtually no discussion ( a real rarity in this group) – new leadership is needed at the CDC. My mouth gaped open. I heard Robert Millers wife Courtney softly
ContinueDr. Reeves at the CFSAC: Too Little Too Late?
Posted by Cort Johnson Dr. Reeves produced the five year plan for the CDC’s CFS research team. He was in his element. He seemed sincere and open; patients think of him as something of an ogre but you’d never get sight of that in his presentations. Kim McCleary later noted that he’s a master at the art of presentation. But one suspects
ContinueIACFS: MIA or A Force? – The CDC Review
Posted by Cort Johnson The patient community and the CFIDs Association of America showed up for the comment session on the CDC’s CFS research effort but the research community didn’t. Except for Staci Stevens and Dr. Klimas and a brief statement on behalf of the IACFS/ME no other researchers spoke. Time for the IACFS/ME To Step Up – The review
ContinueSystemic Change Needed: CAA Hits CDC Again
Posted by Cort Johnson “The CDC’s CFS research group has lost it’s mojo” Kim McCleary Patient anger towards the CDC’s CFS research effort has been high for many years and the patient comments provided many heartfelt and cogent critiques of the group at the public comments meeting but the CFID’s Association of America is in a different position. For one,
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