September 2010
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

The CFS community's dynamic and varied responses to the Lo/Alter study that links CFS to a family of murine leukemia viruses surfaced lots of questions, so CEO Kim McCleary turned to a network of experts for their answers. Here's the background on how you helped shape this month's Q&A feature story.

Research Matters

Results of a highly anticipated study of XMRV in CFS patients conducted by researchers at the FDA and NIH yielded somewhat surprising results. 32 of 37 (86.5%) of patients tested positive for murine leukemia virus (MLV) sequences that are different from, but closely related to, XMRV. The study was published in the Proceedings of the National Academy of Sciences (PNAS)on Aug. 23, 2010 and generated worldwide media coverage by print, broadcast and online news outlets. For links to the PNAS article and accompanying editorial and commentary, summary, analysis and media articles, visit our MLV resource page.

In the days following publication of the PNAS article, we collected frequently asked questions (FAQs) about the study and media coverage it generated. We requested answers from a range of experts familiar with this study, the emerging field of research into XMRV and other murine leukemia retroviruses, blood safety issues and the related media coverage. These questions are answered here by Drs. Shyh-Ching Lo, Harvey Alter, Anthony Komaroff, Judy Mikovits, Louis Katz, Robert Silverman and other experts.

With all the attention focused on CFS and its association with a family of murine leukemia viruses, what studies should come next? The Association's scientific director Suzanne D. Vernon, PhD, provides her perspective on this question and how the latest discoveries can help advance diagnosis and treatment for CFS.

The First International XMRV Workshop will be held at the National Institutes of Health on Sept. 7-8, 2010. The meeting will bring together researchers working on a wide range of studies and the program features sessions on CFS and prostate cancer. Scientific director Suzanne D. Vernon, PhD, and CEO Kim McCleary will represent the Association at this important conference. The closing session Q&A will be webcast to the public on Wed., Sept. 8 at approximately 5:15 p.m. (EDT).

Our next webinar addresses CFS & the Viral Connection. Join us on Sept. 16 at 12:30 p.m. (Eastern time) for a presentation by Dr. Anthony Komaroff, a long-time CFS clinical researcher and a collaborator on the latest study of murine leukemia viruses, during which he will describe infectious agents that have been associated with CFS over time, including XMRV and MLVs. Advance registration is required.

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 Department of Health & Human Services CFS Advisory Committee meets next on Oct. 12-14, 2010 in Washington, D.C. The first day of the meeting will be dedicated to the science of CFS; days two and three will allow the committee time to hear federal agency presentations, public testimony and subcommittee reports, as well as to make recommendations to the Secretary of Health.

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. Comments about the site are invited by CDC and should be submitted to cdcinfo@cdc.gov. CDC staff members recommend that comments include the specific text and/or web page address (URL) of concern so that action can be targeted accordingly.

You Matter

In June we launched a four-part series of articles exploring the topic of post-exertional malaise, or post-exertional relapse, in CFS. Writer Jennie M. Spotila, JD, addresses strategies to mitigate and prevent this disabling symptom in the final installment, "Post-Exertional Malaise: Power to the People."

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 covered the different types of disability insurance and described how to navigate the process of obtaining benefits if you are no longer able to continue working.

Treatment Matters

The recording of the Sept. 1, webinar on Managing Orthostatic Intolerance, featuring Peter Rowe, MD, is now up on SolveCFS YouTube. You can find all the past webinar recordings there, too. We'll be posting slides and other links in the day or two.

Shire Pharmaceuticals announced on Aug. 17 that it would withdraw ProAmatine (midodrine) from the market effective Sept. 30, 2010. This decision follows notice provided to Shire by the FDA that post-marketing studies were inconclusive to maintain marketing approval for the drug. ProAmatine is used to treat low blood pressure and dizziness in conditions including orthostatic intolerance, common in individuals with CFS. Generic forms of midodrine sold by Mylan Pharmaceuticals, Impax Laboratories, Sandoz, Apotex and Upsher-Smith Laboratories may also be in jeopardy. The Heart Rhythm Society has urged FDA not to remove midodrine from the market. Watch our Facebook page for more info.

A commentary article in PNAS by Valerie Courgnaud and colleagues about the study by Lo et al. suggests, "As we currently lack postulates to prove a causal association with a prevalent agent and chronic disease with genetic predisposition, it would also be appropriate to conduct interventional studies...Such studies are now feasible for CFS, because reverse-transcriptase inhibitors, such as tenofovir and emtracitabine, and the integrase inhibitor raltegravir, can inhibit XMRV." Companies that manufacture these medications, including Gilead Sciences and Merck, appear to be taking a wait-and-see approach until there is more evidence, according to media reports about the study.

On Aug. 20, an FDA panel voted 20-2 against approval for Jazz Pharmaceuticals to market its drug Xyrem (sodium oxybate) for relief of fibromyalgia pain. The panel cited concerns about potential abuse of the drug; it is the same formulation as GHB, the "date rape" drug, and is handled as a controlled substance for the treatment of narcolepsy. The FDA's final decision about the drug, which has also been tested in CFS, may come in Oct.

News & Notes

Our 2010 Webinar Series has already provided programming to more than 12,500 viewers this year, and we have many more high-interest programs in store. Check out the updated schedule and recordings of past programs.

A patient conference sponsored by the Organization for Fatigue and Fibromyalgia Education and Research (OFFER) will be held on Saturday, Sept. 11, at the Marriott Hotel in Salt Lake City from 1:00-4:30 PM. A continuing medical education (CME) conference for health care professionals will be held that morning in the same location.

The New Jersey CFS Association (NJCFSA) will host its annual fall conference on Sunday, Oct. 17 in Eatontown. CME credits are available to health care professionals through Monmouth Medical Center.

The Whittemore Peterson Institute will host its 6th annual gala fundraiser "I Hope You Dance" on Sept. 10 at the Peppermill Casino in Reno, Nev.

Inspired to create a model residence for people struggling with health-related disabilities, Patrick Holaday and Lynn Royster are pleased to announce Holaday House. Located in a quiet neighborhood in a suburb of Dallas, Texas, Holaday House is designed to provide an assisted living environment for up to four individuals. Patrick has had CFS since 1986 and his mother, Lynn, created the Chronic Illness Initiative at DePaul University and served on the board of the CFIDS Association for six years. They are seeking residents to share this tranquil home and services. Costs are equivalent to traditional assisted living facilities.

The Centers for Disease Control and Prevention is recruiting applicants for the position of Chief, Chronic Viral Diseases Branch, to direct the Chronic Fatigue Syndrome research program. The branch chief serves as principal investigator of epidemiology studies and develops laboratory research programs designed to improve diagnosis and management of human papillomavirus (HPV)-associated cancers, CFS, and other related unexplained or chronic illnesses. The application deadline is Friday, Sept. 3, 2010*.

*Note: CDC has extended the due date for applications to Sept. 17, 2010.