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
ContinueMonth: May 2009
The Big Breakthrough (!)(?)
Posted by Cort Johnson Some bloggers have jumped all over the announcement by Dr. De Meirleir that an important cause of ME/CFS has been found. This is, they say, the ‘big breakthrough’. But is it? With just the abstract in hand let’s take a look at what little we know. The Announcement – Dr. De Meirleir has been in this business
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
Continue“They Should Know!” – the ME-CFS Community Story Contest
Posted by Cort Johnson ME-CFS Community – my favorite new website – is sponsoring a contest that, I think, can make a difference. We patients don’t have much influence on the research or even (unfortunately) on governmental policies. We’re not simply strong enough as a community to strongly effect either of those things. But we’re very strong as individuals because
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
ContinueThe Next Step? Ashok Gupta at the IACFS/ME Conference
Posted by Cort Johnson Ashok Gupta recovered from chronic fatigue syndrome (ME/CFS) patient almost ten years ago. His research into his condition lead him to develop a new theory of the disease and novel techniques for treating it. He believes that the fear center of the brain – the amygdala – has become chronically activated – causing the body to
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
ContinueDr. Cheney Goes His Own Way: the Virginia 2009 Lecture
Posted by Cort Johnson Dr. Cheney gave a lecture on ME/CFS (chronic fatigue syndrome) on April 25th, courtesy of the Northern Virginia CFS/ME/FM and OI Support group. According to a report of the talk posted by Chris on CFSFMExperimental Yahoogroup on April 27th, Dr. Cheney, a creative physician and provocative speaker, did not disappoint. In a three hour non-stop, often
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