September 2009

CFSAC Nominations in Play

September 27, 2009

Posted by Cort Johnson

The CFSAC is the  federal advisory committee on chronic fatigue syndrome. It advises the Secretary of Health on the federal response to ME/CFS including research, treatment and disability. Among the agencies it interacts with are the Centers for Disease Control, the National Institutes of Health and the Social Security Administration.

FIve slots are open, one of which is the patient representative . You can provide letters of support for people you’d like to see nominated.

My Picks – There are a lot of very worthy people with impeccable credentials on the list – virtually everyone, from what I can tell, would be a real asset.Read More

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Posted by Cort Johnson

Its nice to see chronic fatigue syndrome (ME/CFS) well represented on the national stage. Dr. Donnica Moore was comfortable and poised on Good Morning America as she clearly enunciated many of the major aspects of ME/CFS.  Early on she focused on post-exertional malaise – something we really need to get across. The inevitable depression question didn’t come until the end and she handled it well.

She’s been on  the national stage before on CNN, Tyra Banks and others. The best thing, though, is that she’s  been nominated for the federal advisory panel on CFS (CFSAC) by the CFID’s Association of America.… Read More

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Posted by Cort Johnson

The CFIDS Association of America generated a shockwave when Kim McCleary stood up at the federal advisory committees November 2008 meeting and accused the CDC’s CFS research program of wasting millions of dollars and engaging in poor research and said the program’s leader, Dr. Reeves had to go. The CAA would go on to slam the CDC again and again over the next six months.  They did it alone.  And they shouldn’t have.

Our Missing National Group - The CAA has primarily been a patient support organization and thus lacks some clout with regards to research issues.… Read More

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CDC Grows MORE Isolated

September 20, 2009

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- not one.

This wasn’t how it was supposed to be. Just 6 months ago Dr. Reeves was raked over the coals by the CFID’s Association of America, the IACFS/ME and the CFSAC for his inability to play well with others. In May, sitting before the federal advisory committee on CFS (CFSAC )(and his boss) Dr.… Read More

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CDC Isolation Grows

September 20, 2009

Posted by Cort Johnson

It’s nice that things are going so well over at the CDC CFS Research team – it seems that they’ve 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 no one showed up from the biggest CFS team – the CDC.

This was an amazing thing. Just 6 months ago Dr. Reeves was raked over the coals by the CFID’s Association of America, the IACFS/ME and the CFSAC for his inability to play well with others.… Read More

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A Personal Lesson in Humility

September 13, 2009

A Guest Blog By Laurel

(Laurel, a young woman with magna cum laude from Tuft’s University, has a severe case of ME/CFS. In this poignant blog she talks about some of hard lessons she learned (which everyone with this disorder should contemplate) and provides a personal look from the world of the severely afflicted.

The CFIDS Association of America recently took a poll in which, among other things, they asked their members which personal stories they were most interested in hearing about. Not surprisingly, somewhere at the top of the list were stories from those who had recovered. People want to hear about what others did to get better.… Read More

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Posted by Cort Johnson

CDC/CFSAC BLOGS #2

International Workshop – Clinical Management of CFS

The aim of this workshop (to be held summer 2009) is to establish a collaborative international consortium of investigators who will present and discuss evidence- and practice-based findings related to the treatment, and management of CFS. CDC’s Five Year Strategic Draft Plan – May 2009

This weekend, Labor Day, marks the traditional ending of summer in the US. It will also mark the first promise broken of the CDC’s  Five Year Strategic Draft Plan. Six months ago Dr. Reeves promised to hold an international conference on the management of chronic fatigue syndrome (ME/CFS) in the summer of 2009.  Read More

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Posted by Cort Johnson

Dr. Chia posted a lengthy response to some of the questions asked regarding the last Oxymatrine post. (I added the headers)

Dr. John Chia:

Interferon and Oxymatrine: First of all, oxymatrine or equilibrant is used alone without interferon in almost all of the patients. I only used interferon-alpha 2a to help reducing the muscles pain often worsened by the use of oxymatrine. Interferon was used in patients who had major relapses immediately following discontinuation of this immune modulator and marked increase of myalgia with restart of 1/2 tablet of the herbal product. The use of interferon helped the patient to get back to full doses of oxymatrine within a 2-3 week period.… Read More

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Posted by Cort Johnson

In April Dr. Cheney startled ME/CFS patients he announced that based on echocardiographic testing, that several commonly used supplements, some of which he had previously championed , were actually bad for ME/CFS patients. They included glutathione/whey protein, coenzyme Q. 10, D-Ribose and Vit D. Now he’s casting doubt on another core treatment; omega-3 fatty acids (fish oils).

Dig Deeper! Dr. Cheney Goes His Own Way: the April Virginia Conference

Dr. Cheney is using something he calls ECHO Terrain mapping to assess the effectiveness of chronic fatigue syndrome treatments. This appears to involve placing a substance on the patients skin and then measuring their IVRT (speed with which the heart expands during diastole).… Read More

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