Back to 2010 Listing
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In This Issue
From the CEO
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.
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):
- "Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome" Retrovirology (Feb. 15, 2010)
- "Second XMRV Negative Study...Still In Search of a Proper and Robust Replication Study," by Suzanne Vernon, PhD (Feb. 16, 2010)
- AABB Statement on XMRV Task Force (Feb. 17, 2010)
- "Secrets of Novel Retrovirus Unfolding," MedPage Today (Feb. 21, 2010)
- New Studies on XMRV Presented at the 2010 Conference on Retroviruses and Opportunistic Infections (Feb. 22, 2010)
- CDC Posts XMRV Information (Feb.22, 2010)
- "Prevalence of XMRV in patients with CFS in the Netherlands: retrospective analysis of samples from an established cohort," British Medical Journal(Feb. 25, 2010)
- "Playing A Weak Hand Well," by Suzanne D. Vernon, PhD (Feb. 26, 2010)
- "XMRV establishes an efficient spreading infection and exhibits enhanced transcriptional activity in prostate carcinoma cells," Journal of Virology (March 2010)
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.
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.
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 firstname.lastname@example.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.