April 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

Ten days ago, we announced the SolveCFS BioBank, a unique resource for research that we're creating with selfless participation from the CFS community. The SolveCFS BioBank will speed discovery of biomarkers and treatment. Read our March 29 announcement and other BioBank news in this Link issue.

Research Matters

Questions about the SolveCFS BioBank or your eligibility to participate? Maybe this FAQ will help. We've compiled answers to the questions we've heard most often since the March 29 announcement.

On March 22, Dr. Marvin Medow was joined online by 347 participants for a webinar on his group's research into orthostatic intolerance in CFS. We've archived the recording and slides on our site for those who missed the live program. You can also find the video on our SolveCFS Channel on YouTube at http://www.youtube.com/solvecfs.

This month we have invited Dr. Leonard Jason to provide an explanation of the various definitions and diagnostic criteria for CFS. Join us on April 14 at 2:00 p.m. (Eastern Daylight Time) for the fourth webinar in our 2010 series. Advance registration is required. https://www1.gotomeeting.com/register/795206296

There were no new CFS-specific reports about XMRV published in March, but researchers at several different centers are engaged in studies to better understand this agent and its potential role in CFS. Keep up with the latest news on our XMRV resource page.

• University of Utah researcher Ila Singh, PhD, reported in PLoS ONE that selected antiretroviral agents http://www.sltrib.com/news/ci_14809035 were effective at stopping XMRV replication in culture, and more reports about XMRV are anticipated this month.
• An article published in the April issue of Urology reports that Emory University researchers have developed an experimental clinical test for XMRV http://www.eurekalert.org/pub_releases/2010-04/ehs-nis040510.php.
• Two top virologists, Vincent Racaniello and Stephen Goff of Columbia Universty, talk about the origin of the retrovirus XMRV and its association with prostate cancer and chronic fatigue syndrome during a 55-minute podcast http://www.virology.ws/

Kurt Rowley, Ph.D.

Guest Editorial: This month we introduce a new periodic feature, a guest editorial on a research topic of high interest to our readers. Kurt Rowley, PhD, shares his view about the formal and informal process of achieving consensus in his essay, "Is XMRV a New Paradigm for CFS? The Role of the Scientific Consensus Process in the XMRV Debate."

Advocacy Counts

The federal CFS Advisory Committee (CFSAC) to the secretary of health will meet on May 10, 2010 in Washington, D.C. The CFSAC will hear agency updates and public testimony. The meeting agenda isn't yet available, but an update on the blood safety study of XMRV is expected. Details about how to request time to deliver a statement are available on the committee's web page. The Association has archived its reports on past meetings and a description of the committee's history. New appointees to the committee, replacing the five members whose terms expired on Jan. 2, 2010, have not been announced yet by the Department of Health and Human Services.

The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being revised by the American Psychiatric Association (APA) for release in 2013. Creation of a new category of mental disorder called "Complex Somatic Symptom Disorder" has generated concern by CFS advocates and organizations. On April 1, the Association submitted its comments on the DSM-5 proposal and an urgent recommendation to abandon creation of the CSSD classification. The APA will accept public comments until April 20; unfortunately, registration is required to submit comments and there is no mechanism available to use our Grassroots Action Center to simplify message-sending.

Members of the Association's board of directors and staff met with Congressional appropriators on March 3 and 4 in an effort to expand research CFS funding by the Department of Health and Human Services and the Department of Defense. Here's a brief report on those meetings and links to the talking points we shared with funding decision-makers.

You Matter

Our 2010 Webinar series has gotten off to a great start with three well-attended programs so far. The enthusiastic response and interest among experts to participate has enabled us to expand the series to twice monthly programs. Here's some background on webinars and a schedule of topics, speakers and dates through year-end. We'll continue to inform CFIDSLink readers of upcoming programs as the year goes on, but we wanted to share the news of the great programs we will host over the coming months!

Help us stock the SolveCFS BioBank with samples and clinical information obtained from patients who meet strict enrollment criteria for the inaugural BioBank studies. Please consider enrolling if you've been diagnosed with CFS by one of these three physicians: Dr. Lucinda Bateman, Dr. Nancy Klimas and Dr. Charles Lapp. Please note: this is just the first phase of recruitment and criteria will change (and likely broaden) as other study collaborations are developed.

News & Notes

The Wall Street Journal reported on the interagency federal efforts to assess the potential risks to the blood supply posed by XMRV. The April 4 article mentions the task forces working on this important issue on which Suzanne Vernon and Kim McCleary serve, as well as the Association's SolveCFS BioBank.

On April 7, Health Canada approved the addition of chronic fatigue syndrome to its list of deferred donors (those who cannot give blood), erring on the side of caution until more is known about the role of XMRV in CFS. The Toronto Star reports that this change will be rolled out to blood donation centers over coming weeks.

The March issue of Pharmaceutical Executive, a monthly magazine for the pharmaceutical industry, carried an article titled, "The Race Is On" about XMRV and CFS.

Our SolveCFS.org website has been updated to house information about the SolveCFS BioBank. Take a look!

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.