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May 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
This issue of the Link is chock-full of news about upcoming events, recent developments and ongoing activities. We hope you'll read our entire message here and that you'll click through the stories, but in case you're short on energy or time, here are a few key highlights we don't want you to miss.
Research Matters
Research Webinars:
- Dr. Suzanne Vernon will take an in-depth look at three of the Association's funded research projects on May 4 at 3:00 PM (EDT). Advance registration is required. The other three projects will be covered on June 17.
- On April 14 Dr. Leonard Jason provided an explanation of the various definitions and diagnostic criteria for CFS. 315 people participated and nearly 700 have viewed the recording. You can watch it on our YouTube channel.
- Links to upcoming webinar topics and archived programs.
Julia Newton’s group at University of Newcastle published results of a study showing muscle proton abnormalities following exercise in CFS patients. Suzanne Vernon, PhD, describes this study and how it brings together other pieces of the CFS puzzle in the "Litmus Test."
The SolveCFS BioBank is off to a tremendous start in its first month! 102 patients meeting enrollment criteria have been sent materials; 41 blood and tissue collection kits have been shipped and 13 completed clinical questionnaires have been returned. We're still recruiting patients diagnosed with CFS by one of these three clinicians - Dr. Lucinda Bateman, Dr. Nancy Klimas and Dr. Charles Lapp. Questions? Check out our BioBank FAQ.
XMRV continues to attract attention from researchers and those in charge of blood safety issues around the world. Listed below are some of the major developments from the past month. Keep up with the latest news on XMRV by visiting our XMRV resource page.
- Canada, Australia and New Zealand announced changes to their countries' blood donation policies for individuals with a past history or current diagnosis of CFS.
- Georgetown University researcher James Baraniuk, MD, published an article, "XMRV in Prostate Cancer and CFS," in Current Allergy and Asthma Reports outlining the evidence and next steps.
- The AABB updated its XMRV Fact Sheet on April 20. This sheet is part of a series of fact sheets on agents that may pose risks to the blood supply.
- In conjunction with the National Institutes of Health, Virology Education is organizing the 1st International Workshop on XMRV for September 2010. Dr. Suzanne Vernon will serve as a member of the Scientific Committee and a session chair.
- Two poster sessions on XMRV and CFS were given at the Centennial Retrovirus Meeting in Prague, held April 29-May 4. Data on the prevalence of XMRV in CFS patients was expected from a research group at Germany's Koch Institute, although reports about their results have not yet been confirmed.
Advocacy Counts
The federal CFS Advisory Committee (CFSAC) will meet on May 10, 2010 in Washington, D.C. The meeting is open to the public and will be webcast and archived for future viewing. Here are links to other key information about the committee:
- Meeting notice
- Meeting agenda
- Committee roster, including 5 new appointees and a new chairman
- Written testimony about the charter submitted by the CFIDS Association
For the sixth year, the Association is sponsoring a Virtual Lobby Day to encourage letter-writing to elected lawmakers, federal health policy officials and the media. This year's campaign will target Secretary of Health Kathleen Sebelius, members of the U.S. Senate and House, President Obama and Vice President Biden, and local media. We'll have easy-to-use pre-addressed templates. Be ready to participate beginning May 10! Sign up for our Grassroots Action Center listserv to make sure you don't miss any opportunities.
The public comment period for the proposed revisions to the Diagnostic and Statistical Manual for Mental Disorders (DSM) ended on April 20. The American Psychiatric Association reported that it received 6,400 comments; nearly 60 percent of the comments were directed to just four of the 13 working groups. Somatoform disorders did not rank among the top four topics, although the CFIDS Association of America and many other organizations and individuals submitted comments about proposed new category called "complex somatic symptoms disorder."
You Matter
Our 2010 Webinar series has already provided more than 3,300 program views and we're just getting started! In addition to the research webinar on May 4 (listed above), join us for these upcoming programs:
- On May 5 at 3 PM (EDT), learn more about four conditions that share several features and commonly co-exist, especially in women with CFS: CFS, endometriosis, temporomandibular disorders (or TMJ) and vulvodynia. You'll hear from leaders of organizations working on behalf of people with these conditions about the symptoms, latest research and what's being done. Registration required. Learn more about commonly co-existing conditions in this article by Dedra Buchwald, MD, from the Chronicle archives.
- Charles Lapp, MD of the Hunter-Hopkins Clinic will describe his Stepwise Approach to Treating CFS & FM on May 20 at 12:30 PM (EDT).
- Check out the schedule for other upcoming programs for the rest of the year!
The spring 2010 issue of The Pain Practitioner, published by the American Academy of Pain Management, features an article about CFS by Association CEO Kim McCleary and scientific director Suzanne Vernon, PhD. This journal reaches 6,000 professionals who manage pain patients; print a copy for your health care professional.
Visual problems common in CFS don't usually get much attention, but they were the topic of discussion for several days on our Facebook page. Here are two articles from the Chronicle archives about visual disturbances that many people with CFS experience, and tips for coping with them.
News & Notes
A generous donor family made a donation of $10,000 last month, and added a challenge to their gift: if the Association raises $10,000 online by May 12, they will donate another $10,000, for a grand total of $30,000! Help us secure this May 12 challenge match by making your gift today. You can donate on our Facebook cause, SolveCFS (where you can see progress toward the total), on our secure website through PayPal, or by sending a check or cash to our mailing address. Thank you for your support!
It's been nearly seven years since Laura Hillenbrand's award-winning essay, "A Sudden Illness," was published in The New Yorker. It's still one of the magazine's top 10 most requested articles.
Gold-medal Olympian Michelle Akers'struggle with CFS has been back in the news thanks to an ESPN story about her effort to rescue abused horses.
Scientific director Suzanne Vernon, PhD, will represent the Association at the International Society for Biological and Environmental Repositories (ISBER) 2010 Annual Meeting, "Diversity in Biobanking: Embracing Differences, Harnessing Commonalities," May 11-15, in Rotterdam.
There are several education and awareness events scheduled this month around the country and around the world in recognition of international CFS/ME awareness day, May 12. Please check our listing and Facebook for dates, locations and topics.
The Whittemore Peterson Institute has announced an upcoming national search for a full-time medical director. Dr. Daniel Peterson retired from the position but will continue caring for patients at Sierra Internal Medicine in Incline Village, Nev.
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