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.
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The 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,
ContinuePatients Blast the CDC
Posted by Cort Johnson The public review session on Monday in Atlanta was part of the CDC’s ten-year review of the program. Thus far the research program has received several internal reviews and an external review and is now in the process of creating a Five-Year Strategic Plan. The public review session Atlanta was focused on suggestions regarding the CDC’s
ContinueBatter Up! CDC at the Plate: On the Mound – The CFS Community
Posted by Cort Johnson The 10 year review of the CDC’s CFS Research program is winding up. They’ve taken an internal look and an external look at the program and an un-solicited outside look . They liked the external look – it glossed over many of the more substantial problems with the program – and were likely horrified at the
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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