July 2010
CFIDSLink—e-News 

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In This Issue

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

From the CEO's Desk

This month, multiple media articles about CFS have appeared in the Wall Street Journal, Science and other high-profile national outlets. In addition to the blood safety announcement from AABB (see "You Matter"), a dispute over XMRV studies from three federal agencies attracted sustained attention. Here's the evolving story about those stories.

Research Matters

The latest XMRV study from researchers at the Centers for Disease Control & Prevention, Koch Institute in Germany and Blood Systems Research Institute failed to find XMRV in the 51 cases, 56 healthy controls and 41 blood donors tested by various methods. Read "Blood from a Stone," from our scientific director, Suzanne D. Vernon, PhD. Here's a link to the study, published in Retrovirology on July 1.

The NIH has awarded a new CFS grant to Maureen R. Hanson of Cornell University to determine whether the presence of XMRV and/or other pathogens is related to the current state of health of individuals who became ill during a 1985 outbreak in rural Lyndonville, New York. The two-year grant began in June.

Dr. Vernon was in Japan last week where she presented at the 6th Conference of Fatigue Science. The large, well-orchestrated group of CFS researchers and clinicians in Osaka is making impressive progress toward objective diagnostics and treatments. She'll share highlights of the research in her upcoming webinar about the Association's research program on July 8 at 1:00 p.m.

We need your help to make the SolveCFS BioBank a robust research resource! Patients with a physician's diagnosis of CFS, post-exertional malaise and cognitive difficulties can now enroll for future studies under new criteria for General Enrollment. Under General Enrollment, participants provide written informed consent and complete detailed clinical questionnaires to become part of biobank future SolveCFS BioBank studies. Blood and tissue samples will be requested from enrollees who meet more specific criteria for approved studies. This new enrollment status facilitates greater participation by members of the community, expands the clinical population available to interested investigators, and enables the Association to defer the expense of sample collection until those samples are needed for an approved study. To learn more, please read information posted on our SolveCFS website, view the recording of last month's BioBank webinar, or send your name and contact information to biobank@cfids.org.

We continue active recruitment of patients diagnosed with CFS by one of these four clinicians - Dr. Lucinda Bateman, Dr. Stephen Gluckman, Dr. Nancy Klimas and Dr. Charles Lapp - for priority sample collection for a current study. We also need samples from control subjects in good health. Questions? Check out our BioBank FAQ.

Research Webinars:

• 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.
  
  
• Transfusion medicine and infectious diseases specialist Louis M. Katz, MD, will present a webinar on Blood Safety & XMRV on Aug. 12. Check out all the other upcoming webinar topics and archived programs.

Treatment Matters

Gastrointestinal symptoms are frequent in CFS, but don't get as much attention as they should. Here's an article on treatment with probiotics, reprinted with permission from the International Foundation for Functional Disorders (IFFGD.org) (c) 2010 IFFGD.

Advocacy Counts

Dr. Francis Collins, director of the National Institutes of Health, appeared for the first time as NIH director before the House Energy & Commerce Committee on June 15. The health subcommittee of this powerful authorizing committee has indicated an interest in holding a hearing on chronic painful conditions, based on the event and report issued by the Campaign to End Chronic Pain in Women. Please urge your member of Congress to support the hearing by sending our template letter.

Last call! Make sure you've expressed your support for expanded CFS research using the four easy-to-use letter templates for Association's 6th Annual Virtual Lobby Day. In minutes you can write to 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 6,559 already sent.

CEO Kim McCleary represented the Association at the National Partnership for Women & Families annual luncheon in Washington, D.C. on June 24, 2010. Secretary of Health Kathleen Sebelius was the keynote speaker and 2010 honoree at this event that attracted more than 1,000 guests from government, industry, healthcare and the nonprofit sectors. At the event she was able to hand-deliver material about CFS to the Secretary and to other agency and nonprofit leaders.

You Matter

The inaugural 24 Hours in the Enchanted Forest: A Race to SolveCFS (24HITEF) was a tremendous success! HITEF is a mountain bike endurance event held for the first time on June 19-20 near Gallup, New Mexico. Here's a report on the event from organizer Claudia Goodell with background about her CFS experience and her inspiration for creating the event with help from other volunteers.

On June 18, 2010, the AABB (formerly the American Association of Blood Banking) issued a bulletin to its membership advising that CFS patients be discouraged from donating blood. The bulletin included information about CFS and a poster for use in blood donation centers. The CFIDS Association issued a statement that day commending AABB's action. AABB's membership consists of nearly 2,000 institutions and 8,000 individuals in more than 80 countries.

This month we launched a Risk Factors Survey and, so far, 1,159 people have responded to it. Risk factors refer to traits, events, environments, exposures, etc. that may be more common among people with a certain condition than those who don't have it. Risk factors are not the same as causes. (See http://en.wikipedia.org/wiki/Risk_factor.) There might also be risk factors for prolonged illness (rather than onset) that are useful to query. Many of the survey questions come from the National Health and Nutrition Examination Survey (NHANES). Using NHANES questions allows us to compare answers to the same question from a broader population. Participation is completely voluntary and you can exit at any time. This survey has 50 questions, but it moves relatively quickly. Questions marked with asterisks on the first page are required to be answered in order to move to the next page. All responses are completely anonymous and voluntary. Results will be reported in the aggregate only. Only one response is permitted per computer. This survey will close on July 16, 2010.

News & Notes

Chase Community Giving is holding a Facebook contest and local charities can compete for awards of up to $250,000. Several local and state CFS organizations are eligible; find the list and learn how to cast your votes here.

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.

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

A new DVD titled "Invisible" addresses common misunderstandings about the nature of CFS. Produced by Rik Carlson and Michael Thurston, this film is now available for sale at www.invisiblethemovie.com. Bulk discounts are available to groups for resale as a fundraiser.