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March 2010
CFIDSLink—e-News 

Back to 2010 Listing

CFIDSLink is e-mailed monthly free of charge to all those interested. Click here to sign up for this electronic newsletter.

In This Issue

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

From the CEO's Desk

XMRV has dominated CFS headlines for five months. While some in the media say the case is closed, a closer look reveals that we've just begun the search for answers to questions the Oct. 8, 2009 publication raised.

Research Matters

 

Two more studies of XMRV in CFS were published in February, generating more debate, media coverage and mixed reactions. There were several (non-CFS) studies presented at the 2010 Conference on Retroviruses and Opportunistic Infections, and two important(non-CFS) XMRV studies published, providing clues about the most recently discovered retrovirus known to infect humans. Here are links to the latest additions to our growing XMRV resource page(in order of the date they were added):

 

On Feb. 18, Dr. Suzanne Vernon gave a well-received webinar overview of the Association's research program and the six innovative studies we are supporting. Learn more about our program and get a sneak peek of the exciting SolveCFS BioBank we'll formally announce in coming weeks! A video recording of the webinar program is available here or on our YouTube channel.

Opportunities for CFS patients to participate in research studies being performed at New York Medical College and Weill Cornell Medical Center, as well as other institutions, can be found here.

Advocacy Counts

Members of the Association's Board of Directors and staff will be meeting with Congressional appropriators on March 3 and 4 in hopes of expanding CFS research funding by the Department of Health and Human Services and the Department of Defense. We'll report on those meetings in the April issue of CFIDSLink.

The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being revised by the American Psychiatric Association (APA). The proposed revision, DSM5, has drawn media coverage and close scrutiny since its release on Feb. 10. Creation of a new category called "Complex Somatic Symptoms Disorder" is of particular concern to CFS patients and organizations. The Association is seeking input from outside experts and will submit a review of the biological abnormalities in CFS to APA. The APA will accept public comments until April 20.

The Veterans Affairs Department announced on Feb. 25 that it will reopen the medical files of veterans who have Gulf War Illness and may not have been appropriately served by military and veteran health care services. 175,000-210,000 Gulf War vets have reported symptoms very similar to CFS since returning from service in Operations Desert Shield and Desert Storm.

You Matter

 

A frequent discussion topic on our Facebook page and in other forums is the delicate balance between activity and rest. We’ve published several articles about this topic over the years because of the challenge that many people with CFS experience in trying to avoid pushing and crashing through symptom relapses. An article included in the March Link written by Alex Howard generated negative response to portions of its content, so we've replaced it with one from the Chronicle archives written by Bruce J. Campbell, PhD, "Managing Your Energy Envelope." If you've found a helpful article on the subject of pacing and energy management, please send it to us at cfidslink@cfids.org.

Another topic that arises frequently is the health issues that women with CFS face that may trigger symptom flares or be signs of a comorbid condition. Here are two articles on gynecologic issues in women with CFS, one by Rosemary Underhill, MB, BS, MRCOG, and another from former Chronicle editor Pamela Young.

News & Notes

The winter 2010 issue of Ms. Magazine includes a two-page article by Nancy G. Klimas, M.D., about CFS and XMRV titled, "It's Not in Your Head." The article is not available online, but copies should still be available at newsstands.

The CFIDS Association's Facebook page marked its first anniversary on Feb. 28, 2010, providing 3,445 fans with regular updates, a lively forum for the exchange of support, ideas and (occasionally heated) debate. We post new information daily and often more frequently. Join us on Facebook to get the latest news first!

Dr.David Bell will speak about XMRV in Toronto on March 6 at a program hosted by the M.E. Association of Ontario.

The Massachusetts CFS/ME & FM Association will host a lecture by Harvard Medical School professor Dr. Anthony Komaroff on April 24, 2010 in Milton, Mass.

Invest in M.E. will hold its 5th annual conference, "A New Era of ME/CFS Research," on May 24, 2010 in London.

 

24 Hours in the Enchanted Forest: A Race to SolveCFS, is a Mountain Bike Endurance Event that will be held on June 19-20 near Gallup, New Mexico. It is being planned by volunteers who support the CFIDS Association of America and hope to attract mountain bikers and other sports enthusiasts to the cause.

We will be extending our 2010 Webinar Series with more programs on topics of high interest to CFS patients, caregivers and advocates. We are in the process of confirming dates and topics with expert speakers. For now, reserve the third Thursday of each month and check our website's webinar home page for new additions.