August 2010
CFIDSLink—e-News 

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In This Issue

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

From the CEO's Desk

It's hard to make sense of discrepant data, and even more challenging to make sense of conflicting reports about where the data stands. Kim McCleary tries to give context to the fast-changing nature of what we know about XMRV.

Research Matters

XMRV

Structure of XMRV Nature Reviews Urology

• There have now been a total of 55 publications about the novel retrovirus XMRV that has been associated with CFS and prostate cancer. We update our XMRV resource page frequently, listing new peer-reviewed publications, media articles and links to other resources.
• Two new papers on XMRV in CFS were published in July by authors at the Whittemore Peterson Institute and National Cancer Institute. An e-pub ahead of print of an article in the Sept./Oct. 2010 issue of Virulence provides an addendum to the methods used to isolate XMRV in 67 percent of CFS patients tested, as published in Science on Oct. 8, 2009. The July issue of Future Medicine includes a forward-looking article titled, "XMRV: Current research, disease associations and therapeutic opportunities."
• Results of a study of XMRV in CFS patients conducted by researchers at the FDA and NIH are at press in the Proceedings of the National Academy of Sciences. This study is hotly anticipated and was the subject of several media articles in Nature, Science, the New York Times, the Wall Street Journal and the Independent last month after controversy arose about conflicting results reached by federal agencies. The authors, NIH officials and HHS staff have confirmed that the study will be published and they await critical evaluation of the data by the scientific community. For links to the media articles, visit the media listing on our XMRV resource page.
• The FDA's Blood Products Advisory Committee heard seven presentations about XMRV on July 26. The Department of Health and Human Services Blood XMRV Scientific Research Working Group will report results from Phase I of its four-phase study. FDA has posted the presentations of these results and other agency updates on its site.
• Transfusion medicine and infectious diseases specialist Louis M. Katz, MD, will present a webinar for the CFIDS Association on Blood Safety & XMRV on Aug. 12. Advance registration is required.
• The First International XMRV Workshop will be held at NIH on Sept. 7-8, 2010. Abstracts are now under review by a scientific committee that will determine which presentations of new data will supplement plenary sessions.
• A recording of last month's webinar on XMRV featuring experts Lucinda Bateman, MD and Vincent Racaniello, PhD, is available on our YouTube channel. Dr. Bateman experienced technical issues and wasn't able to participate in the Q&A session, but she answered questions in writing that we've posted on our web site.

Brain Lactate
Dr. Dikoma Shungu and colleagues at Weill Cornell Medical College have published another study documenting increased lactate levels in the cerebral spinal fluid that correlate with the severity of mental fatigue specific to CFS subjects tested. There were not statistical differences in lactate levels between CFS subjects and the subjects diagnosed with major depressive disorder, but they could be distinguished from healthy controls. Dr. Shungu's study, funded by the CFIDS Association, is published in the current issue of NMR in Biomedicine. Dr. Shungu is testing some of the same CFS subjects as Dr. Marvin Medow in New York Medical College and will compare data to elucidate patterns that might explain these results as well as elucidate other correlations between observations of the central nervous system and autonomic nervous system.

Canadian Case Definition Revisited
Writing in the American Journal of Biochemistry and Biotechnology, Dr. Leonard Jason and colleagues recommend a new set of explicit rules for determining whether critical symptoms meet ME/CFS criteria using the 2003 Canadian Consensus Case Definition. The authors provide a structure that they propose will standardize assessment of subjects for clinical and research purposes.

Participate in Research!
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 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 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.

Advocacy Counts

Nominations are sought for appointments to the Department of Health and Human Services CFS Advisory Committee (CFSAC). Anyone can make nominations, which are due in writing by Sept. 15, 2010 at 5:00 p.m. (EDT). Here's more info about the committee, who's rotating off and how to submit nominations.

The U.S. Senate issued report language with its Fiscal Year 2011 Appropriations bill on July 30 that reflects CFS research priorities for the NIH and CDC. Read more about how these directives came about, the bill's course for passage, and the language itself.

The CFS pages of the CDC's web site were updated in late July and the updates have drawn negative attention and deep concern about information presented to the public and the health care community. The CFIDS Association and other organizations have contacted several CDC staff in an effort to reshape the site to reflect a broader knowledge base and greater accuracy. Updates will follow.

You Matter

In June 2010, we launched a new series of articles exploring the topic of post-exertional malaise, or post-exertional relapse, in CFS. Part 1, titled "Unraveling Post-Exertional Malaise," explored the way this cardinal symptom is defined and feels. This month we continue with parts 2 and 3, written by Jennifer M. Spotila, JD.

• Part 2: Perception and Reality - What have researchers documented about post-exertional malaise and how unique to CFS is it?
• Part 3: Cause and Effect - Studies have shown that deconditioning alone doesn't explain the deleterious response to exercise that most CFS patients experience, so what's going wrong with their bodies?

Securing disability benefits from your employer or the government is one of the most common legal issues faced by people with CFS. In a webinar on Aug. 19, disability attorney Charles "Mac" Sasser will cover the different types of disability benefits, review the SSA's CFS ruling, and describe how to navigate the process of obtaining benefits. Preregistration.

News & Notes

Our 2010 Webinar Series has already providing programming to more than 10,000 viewers this year, and we've got lots more high-interest programs in store. Check out the updated schedule and recordings of past programs. Last month's program on XMRV got attention from Wall Street Journal reporter Amy Dockser-Marcus who attended and blogged about it that evening.

"This Week in Virology," a netcast about "viruses that make you sick," hosted XMRV researcher Ila Singh, PhD, of the University of Utah this week. Dr. Singh is a member of the research team that first linked XMRV to an aggressive form of prostate cancer and she's now testing samples from CFS patients for XMRV. Although her study isn't yet ready for "prime time," the show is always interesting and this conversation promises to be enlightening. A free recording was posted at http://www.twiv.tv/2010/08/08/twiv-94-xmrv-with-dr-ila-singh/.

In response to report language from the U.S. Senate Appropriations Committee, the Campaign to End Chronic Pain in Women issued a press release commending this action on behalf of 50 million women who suffer from one or more painful conditions. Read the press release and visit the website to learn more about the Campaign, of which the CFIDS Association is a founding member.

Congratulations to PANDORA for placing 162nd in the Chase Community Giving Contest for local charities, securing a $20,000 donation from Chase through 1,571 votes cast by friends on Facebook. These funds will support the creation of the NeuroEndocrineImmune Center in New Jersey.

The endurance bike race, 24 Hours in the Enchanted Forest: A Race to SolveCFS, held June 19-20 near Gallup, New Mexico, raised awareness and funds for CFS research. It also got high marks for being a fun event, most recently from XXC Magazine, a publication about endurance bike racing.

On Aug. 16, the University of Nevada-Reno, the University of Nevada School of Medicine and the Whittemore Peterson Institute will celebrate the grand opening of the Center for Molecular Medicine with a program and reception. The public is invited to tour the facility on Saturday, Aug. 21 from 10 a.m. until noon. Researchers and others with the School of Medicine and the Whittemore Peterson Institute will be on hand to explain their work.