June 2009
CFIDSLink—e-News 

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In This Issue

From the CEO
Research Matters
Treatment Matters
You Matter
Advocacy Counts
News & Notes

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. (Click here to read more...)

Research Matters

Reports from London
The 4th Invest in ME conference provided a backdrop for Dr. Kenny De Meirleir and
PROTEA Biopharma to announce "the true nature of CFS" and a $25 home test kit. Read
more about the May 28-29 events and the controversy over the press announcement.

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. (in PDF format)

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. Click here to read the study's abstract and conclusions.

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 and collaborator Sanjay
Matthew have found increased levels of lactate in the brains of CFS patients
and now they are trying to understand why.
Read more at http://nyp.org/advances/diagnosing-chronic-fatigue-syndrome.html.

Treatment Matters

Get the Most from Your Meds
Medication errors harm millions and cost billions every year. Take these five simple steps to reduce the opportunity for errors and make sure your medications are working as best they can to help reduce your symptoms.

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. (Excerpted from the IACFS/ME Bulletin.)

Decision on Ampligen Set for Mid-June
The Food and Drug Administration (FDA) will render its decision on Hemispherx Biopharma's
application for approval to market Ampligen as a treatment for CFS. A decision was
due at the end of May, but was delayed due to FDA staff scheduling changes. Ampligen
is an immunomodulatory drug that has been studied as a CFS treatment for more than
twenty years. If granted, the approval will be FDA's first for CFS.

You Matter

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. Click here.

Advocacy Counts

CFS Advisory Committee (CFSAC) Recommends Change
The federal CFSAC appointed by the Secretary of Health has recommended that the
U.S. Centers for Disease Control & Prevention (CDC) change its leadership to
achieve progress in CFS research and education. Read more here.

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.

5th Annual Virtual Lobby Day: Phase 2
We've updated our action alerts to reflect the CFSAC's recommendations. Take action
now and build on the 3,500 letters that have been sent through the Grassroots Action
Center to the Secretary of Health, CDC elected officials and the media. Follow this link http://capwiz.com/cfids/home/ to our easy-to-complete letter templates.

News & Notes

New Print Publication On Its Way
Later this month, the Association will mail the inaugural issue of its new print
publication, SolveCFS: The Chronicle of the CFIDS Association of America, to Association
members and donors. Make sure you're on our mailing list by making a donation of $35 or more today at .

Faces To Be Seen In New England
"The Faces of CFS" portrait exhibit will be at the Westfield Meriden Mall in Meriden,
Conn., from June 15-21. Visit the Spark! site for more details.

Join Us On Facebook!
The Association's Facebook page now has more than 1,100 fans. Content grows daily
through informational posts from the Association and contributions of fans who share
coping tips, comments about current events and resource referrals. Join us there.