June News From the CFIDS Association

From the Desk of Kim McCleary

It’s rare that I lose my cool in public. But having attended 15 meetings of the Department of Health and Human Services CFS Advisory Committee (and a dozen or so of its predecessors’ meetings), I found it more difficult than usual to maintain a detached demeanor this time. Members of the public are not permitted to address the committee, except during five-minute public testimony slots for which you have to preregister. And committee members often jockey with the chair for time to voice their own ideas and respond to others’ questions and comments.

Reports from London

The 4th Invest in ME International ME/CFS Conference was held on May 29th in Westminster, London. The one-day conference featured a series of lectures on treatment, care and research given by prominent speakers within the ME community. Last year’s conference addressed subgroups and ME/CFS treatments; this year organizers focused on the management and treatment of severe ME/CFS. Speakers representing the U.K., Europe and the U.S. were selected to give presentations.

Burning Down the House

Oxidative stress has been heating up as a topic of exploration in CFS research. Here’s an overview from writer Cort Johnson. He examines what oxidative stress is, the role it could play in CFS and ideas for battling its effects in this Chronicle article.

Chronic fatigue syndrome combines increased exercise-induced oxidative stress and reduced cytokine and Hsp responses.

Yves Jammes and colleagues in France have published a small study showing CFS patients have increased oxidative stress and reduced cytokine and heat shock protein levels following vigorous exercise. These findings, published in the May 19, 2009 issue of the Journal of Internal Medicine, suggest that frequent intense exercise may degrade the body’s protective responses.

Dr. Dikoma Shungu in the News

One of the Association’s six funded research projects was the topic of this story from New York-Presbyterian hospital. Dr. Dikoma Shungu (right) and collaborator Sanjay Matthew (left) have found increased levels of lactate in the brains of CFS patients and now they are trying to understand why.

Multitasking: A Challenge for Patients with CFS

Neuropsychologist Gudrun Lange, PhD, shares her insights into the cognitive problems that underlie difficulties with “simple” tasks of daily living. She also provides tips for how to manage around them.

Personal Profiles: Meet Two CFS Bloggers

Alyson Butcher was the only CFS patient who was able to testify in person at the recent public meetings at CDC and DHHS. (See “Advocacy Counts” for more information about those meetings.) Here is Alyson’s brave testimony, pleading for more action so that she doesn’t lose her 30s, the way she lost her 20s, to CFS.

Cort Johnson is a regular at CFS conferences, public meetings and other events. His science-savvy reports and quick insights make his website and blog popular with a wide audience. Learn more about Cort and his CFS journey.

First Research Survey Still Open

The Association’s first research-oriented survey attempts to harness CFS patients’ own connections between triggering events and symptoms. It is open to participants through June 30. One response per computer permitted; you will receive a message if you’ve already completed it.

CFS Advisory Committee (CFSAC) Recommends Change

On May 27-28, 2009, the CFS Advisory Committee (CFSAC) to the Department of Health and Human Services (DHHS) met in Washington, D.C. This was the Committee’s fifth meeting with its current membership and its 16th overall since being chartered under the Federal Advisory Committee Act in 2002. Committee chairman Dr. James Oleske welcomed the appointed committee members, all of whom were present, and members of the public who had come to listen and give testimony. The CFIDS Association was represented at the meeting by Kim McCleary, president & CEO.

CFSAC Meeting Videocast/Podcast Available

For the first time, the CFSAC meeting was broadcast over the Internet and the recording has been archived. With a free download of RealPlayer 8.0, you can watch the proceedings. Click here and scroll to find the May 27-28 sessions.

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