May 2009

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 exclaim “Yes!”  Several of these people have worked with Dr. Reeves for years, yet there was no hesitation at all, they all agreed Dr. Reeves should go and the group forwarded that recommendation to the secretary of the DHHS.

The unanimity is remarkable; all the professional organizations, most of the support groups, many of the patients – the roar, if the CDC chooses to listen to it, is getting deafening.… Read More

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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 awhile. He was the foremost proponent and investigator of the idea that RNase L was’ it’ in ME/CFS. While RNase L does not appear to be ‘it’ in ME/CFS it was an important contribution to the field. Dr. De Meirleir publishes frequently in the scientific literature and has treated many chronic fatigue syndrome (ME/CFS) patients.… Read More

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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 that he’s masterful in the way that many government officials are. They’re always very nice but it’s often difficult to get a straight answer to a question. 

The standard MO for dealing with an issue seems to be to give a history lesson.… Read More

8 comments

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 we all have one thing that can reach out and grab someone by their throat: our stories.   

Our stories can make more of a difference than just about anything else.  Politicians and bureacrats do not respond to statistics – they’re immersed in them all the time – but  a good story- that  really resonates.  … Read More

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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 process has highlighted some substantial holes in the ME/CFS community’s response to events. The CFIDS Association of America, with its report on the CDC, had its act together but thus far, our professional research organization – the organization that theoretically should be most embedded in this review process, the IACFS/ME, has almost completely missed the ball.… Read More

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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 over-respond to virtually every stimulus presented to it. Over time this results in exhaustion, hyper-sensitivity, increased pain, etc. After treating patients for about five years in his clinic in London he created a DVD program patients can use to guide themselve through his program.… Read More

40 comments

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, after getting senate  (Harry Reid) and congressional help they’ve dug deep into CFS research teams records for the past year – something no patient could ever do. With Suzanne Vernon, the former lab chief of the program, on board, they have a special insight into the state of the CDC’s research team as well.… Read More

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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 future direction.… Read More

30 comments

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 extemporaneous lecture, populated with power-point slides, Dr. Cheney continued to plow new ground.

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