June 2010 Extra!
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

In an effort to keep our readers up-to-date with all the news, we're sending an Extra! issue again this month. The Association's Board of Directors met last weekend in Chicago. One of the actions resulting from the meeting was to expand enrollment for the SolveCFS BioBank. See our announcement below. We need you to help us build a valuable and robust research resource! -- Kim McCleary

Research Matters

The SolveCFS BioBank is inviting patients with a physician's diagnosis of CFS, post-exertional malaise and cognitive difficulties to 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 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 this week'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 three clinicians - Dr. Lucinda Bateman, 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.

Advocacy Counts

The federal CFS Advisory Committee (CFSAC) met on May 10, 2010. Minutes of the meeting and copies of presentations were posted this week to the official CFSAC website.

The CFIDS Association is working with three other organizations on the Campaign to End Chronic Pain in Women. The Campaign aims to improve the quality of women's lives by raising awareness about chronic pain conditions that disproportionately impact women, as well as the neglect, dismissal and discrimination faced by women living with chronic pain. View the video recording of the May 19 launch event, read the detailed report and view the film, "Through the Maze: Women & Pain," all at www.endwomenspain.org.

Three articles in this week's issue of Nature examine the effect of gender on medical research and care. CFS is recognized in one article as one of many conditions for which disease incidence, prevalence, symptoms, age at onset and severity differs by sex. Read the editorial in the world's most highly cited interdisciplinary science journal, giving the disparity in funding extremely high visibility in the scientific community and among those making health policy and funding decisions.

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

This month we launched a Risk Factors Survey and, so far, 795 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 15, 2010.

News & Notes

This week the Chicago Tribune brought attention to CFS through two articles and a live chat event. Learn more about this coverage and the response it generated.

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.

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 represent the Association at the National Partnership for Women & Families annual luncheon in Washington, D.C. on June 24, 2010. Secretary of Health Kathleen Sebelius is the keynote speaker and 2010 honoree at this event that attracts guests from government, industry, healthcare and the nonprofit sectors.

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

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.