June 2010
CFIDSLink—e-News 

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In This Issue

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

From the CEO's Desk

There has been a great deal of activity this spring and summer promises to bring just as much news. CEO Kim McCleary provides an overview of the latest events and why she's more optimistic than ever that all this action means faster progress.

Research Matters

In the June 1, 2010 issue of Nature Reviews Urology, Robert Silverman, PhD, and colleagues at the Cleveland Clinic published a detailed 11-page review titled, "The human retrovirus XMRV in prostate cancer and CFS." Our scientific director, Suzanne D. Vernon, PhD, offers her comments about this important paper and other related research in "We Are Not Alone." We have updated our XMRV resource page with the latest news and links.

Dr. Gordon Broderick is one of six researchers funded by the Association. With colleagues from University of Miami and the Association, Broderick's team published a study in Brain, Behavior and Immunity titled, "A formal analysis of cytokine networks in CFS." The authors conclude, "These observations are consistent with several processes active in latent viral infection and...[identify] key sub-networks...that might be targeted in restoring normal immune function."

The SolveCFS BioBank is gathering speed and participants! We are actively recruiting patients diagnosed with CFS by one of these three clinicians - Dr. Lucinda Bateman, Dr. Nancy Klimas and Dr. Charles Lapp. We also need samples from control subjects in good health. Questions? Check out our BioBank FAQ.

The National Institutes of Health recently awarded two new grants for CFS research. Both explore infectious agents and their role(s) in CFS.

Research Webinars:

• Learn more about the SolveCFS BioBank from Suzanne D. Vernon, PhD, the Association's scientific director, and Liz Horn, PhD, MBI, director of the Genetic Alliance BioBank. Join us on June 8 at 2:00 p.m. (EDT). Advance registration is required for each webinar.
• Dr. Suzanne Vernon will take an in-depth look at three of the Association's funded research projects on June 17 at 1:00 p.m. (EDT). This is the last part of a mini-series of webinars about the Association's research program. Recordings of the first two segments are available on YouTube.
• Columbia University virology professor Vincent Racaniello, PhD, and Lucinda Bateman, M.D., an expert clinical researcher, team up for a webinar on XMRV on July 15 at 12:00 p.m. (EDT). Dr. Racaniello is host of the popular podcast "This Week in Virology" and Dr. Bateman is a collaborator on a University of Utah study of XMRV in CFS.
• Links to other upcoming webinar topics and archived programs .

Advocacy Counts

A Capitol Hill event on May 19 drew a standing-room-only crowd and attention to the neglect, dismissal and discrimination that women in chronic pain face. The CFIDS Association with three other organizations and the Congressional Caucus on Women's Issues put on the event, which was the formal launch of the Campaign to End Chronic Pain in Women. Visit the website, view the short film "Through the Maze," and read the detailed report and policy recommendations.

The federal CFS Advisory Committee (CFSAC) met on May 10, 2010. Here is our meeting summary including a list of the recommendations forwarded by the committee to the Secretary and Assistant Secretary for Health.

The Association's 6th Annual Virtual Lobby Day is well under way, with four easy-to-use letter templates to reinforce the CFSAC's recommendations, request expanded research from Congress, President Obama and VP Biden, and request media coverage from your local broadcast and print media outlets. Add your voice and messages to the 6,136 already sent.

You Matter

Post-exertional malaise/relapse is a hallmark of CFS, and it has received renewed research attention. In the first of a series of articles about post-exertional malaise/relapse, Jennie Spotila describes this disabling - and relatively unique - symptom.

We're taking a new survey this month of risk factors in CFS. All responses are anonymous and results will be reported in the aggregate only. Share information about factors that might have contributed to the onset of your illness. Only one response per computer; this survey will close on July 16, 2010.

Our 2010 Webinar series has provided more than 5,000 program views and we're just getting started! You can find the recordings and slides for past webinars on our website and on YouTube. Here are a few links to check out:

• Charles Lapp, MD of the Hunter-Hopkins Clinic described his Stepwise Approach to Treating CFS & FM and provided many practical management tips that you can begin to implement on your own.
• Warmer temperatures often exacerbate CFS symptoms due to orthostatic intolerance. Marvin Medow, PhD of New York Medical College reviews his research on blood flow in CFS.
• Check out the schedule for other upcoming programs for the rest of the year!

Treatment Matters

The ME Association has published results of an extensive survey of treatments and care, "Managing My ME." Some of the report's questions/answers are specific to the medical system in the U.K., but others are of broad interest.

News & Notes

The spring/summer 2010 issue of SolveCFS: The Chronicle of the CFIDS Association is headed to press and will be mailed to Association donors by mid-June. Renew your support of $35 (or more) to ensure that you're included on our mailing list.

Invest in M.E. held its fifth annual conference on May 24 in London. Dr. Charles Shepherd of the ME Association posted a report about the presentations for ME Essential magazine. Invest in M.E. offers a DVD for purchase.

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.

Suzanne D. Vernon, PhD, scientific director of the CFIDS Association of America, will give a presentation about the current status of CFS research at the 6th Conference of Fatigue Science in Osaka, Japan. The conference will be held June 24-26, 2010.

CEO Kim McCleary will be a speaker at the 2010 Genetic Alliance Annual Conference, "Advancing Novel Partnerships," July 15-18, 2010 in Bethesda, Maryland.