October 2010
CFIDSLink—e-News 

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In This Issue

From the CEO
Research Matters
Public Policy Counts
Treatment Matters
You Matter
News & Notes

From the CEO's Desk

There are lots of different voices in the CFS community and we need them all.

Research Matters

On Oct. 12, 2010, the federal CFS Advisory Committee (CFSAC) will host a "science day" featuring presentations from six researchers studying various aspects of CFS pathophysiology. The session will be webcast live. According to the Federal Register notice, the purpose of this science day is to describe the latest developments in etiology, natural history, clinical trials and related areas. (See Public Policy Matters below for more info about the CFSAC meeting.)

Three of the six research teams funded by the CFIDS Association shared preliminary data from their projects, as well as other outcomes of Association support, during our Oct. 5 webinar, "Expanding Research: Building on Your Investment." Learn more about these teams' findings and how your support has spurred progress on validating biomarkers, understanding disease mechanisms and securing larger sums for CFS research. Participants were excited to hear about data sharing that's "connecting the dots" and about new funding awards and clues to target treatment.

It's been almost exactly a year since publication of the landmark study by Lombardi, et al. in Science that first associated CFS with the gammaretrovirus XMRV. Last month, 225 researchers met at the National Institutes of Health for the 1st International XMRV Workshop to share data and make sense of discrepant results in CFS and prostate cancer studies. Here is more information about the meeting, including links to our detailed summary report, the webcast Q&A session and other meeting resources.

The latest publication reporting efforts to detect XMRV in CFS patients is from China, by Ping Hong, et al. Using polymerase chain reaction (PCR), the group tested peripheral blood mononuclear cells obtained from 65 CFS patients, 65 healthy blood donors and 20 control subjects infected with hepatitis B, hepatitis C, HIV-1 or HTLV. None of the samples were positive using methods reported in Virology Journal on Sept. 13, 2010. We've updated our comparison of the published studies and regularly update our XMRV Resources page to reflect the latest studies.

Two letters to the editorof the Proceedings of the National Academy of Sciences were published on Sept. 30, 2010 with a response from Shyh-Ching Lo and other authors of the FDA/NIH/Harvard study that reported polytropic murine leukemia virus sequences in 32 of 37 (86%) CFS patient samples tested. The conclusion of the response from Lo and colleagues states, "Our recent collaborative studies with a National Cancer Institute group have shown that we can detect antibodies in most patients with CFS with positive gagsequences and not in most PCR-negative subjects; studies on virus isolation are presently in progress. As we stated in the Discussion of our study, these and many other studies will be needed to better understand the true nature of association between murine retroviruses and CFS."

One of the topics raised frequently over the past year and discussed at the NIH workshop is the potential for laboratory artifacts of mouse DNA to confound studies of murine-related viruses. This subject received even more attention as a result of an opinion piece, "A Cautionary Tale of Virus and Disease," published by Robin Weiss in BMC Biology on Sept. 27, 2010. Weiss is a retrovirologist who catalogued the many retroviruses that have been associated with human diseases, including several types of cancer, MS, lupus, psoriasis, schizophrenia and CFS, in a 2008 article titled, "Human RNA 'Rumor' Viruses: the Search for Novel Human Retroviruses in Chronic Disease."

Anthony Komaroff, MD, of Harvard Medical School, presented an Association webinar titled, "CFS & the Viral Connection." on Sept. 16. Dr. Komaroff is a long-time CFS clinical researcher and is a collaborator on the FDA/NIH/Harvard study of murine leukemia viruses in CFS. He reviewed many important findings in CFS and related them to various infectious agents that have been associated with CFS over time, including XMRV and MLVs.

Public Policy Counts

The Department of Health and Human Services (DHHS) solicited nominations from the public for five appointed positions on the CFS Advisory Committee (CFSAC) that will come open in April 2011. The CFIDS Association nominated seven highly qualified individuals to be considered. The selection process is handled by DHHS in accordance with the Federal Advisory Committee Act.

The DHHS CFS Advisory Committee meets next on Oct. 12-14, 2010 in Washington, D.C. The meeting agenda was set by DHHS in consultation with members of the CFSAC. The first day of the meeting will be dedicated to the science of CFS and features presentations from NIH-funded investigators and others about a variety of topics, including XMRV. Day two will focus on issues related to documenting vocational disability and other employment-related issues that fall under the recently renewed CFSAC charter. On day three, the committee will hear federal agency presentations and subcommittee reports, as well as make recommendations to the Secretary of Health. There are three hours dedicated to public testimony and the entire meeting will be webcast live and archived for later viewing.

Expanding sources of research funding is central to the CFIDS Association's mission and is its core strategy. For the first time, the U.S. Senate Appropriations Committee for the Department of Defense has included CFS as an eligible topic for the $50 million Congressionally Directed Medical Research Program (CDMRP) for fiscal year 2011. The Association was instrumental in justifying the relevance of CFS to military and civilian health, a requirement to be deemed eligible for funding. The fiscal year 2011 appropriations process was extended on Sept. 30, 2010, when Congress passed a continuing resolution that provides interim funding for government programs through Dec. 3. We will be working to protect this designation and other funding priorities recognized by appropriators for the Department of Health and Human Services.

Treatment Matters

ProAmatine (midodrine) is a prescription drug used to treat low blood pressure and dizziness in conditions including orthostatic intolerance. It is a mainstay for many CFS patients and there was understandable panic when the manufacturer, Shire, announced that it would withdraw it from the market effective Sept. 30, 2010. Shire's decision followed notice from FDA that post-marketing studies done to date were inconclusive to maintain marketing approval for the drug. On Sept. 3, the FDA reversed its decision and agreed to allow ProAmatine to stay on the market while additional studies are conducted. Read the details in this New York Times story.

Our Sept. 1 webinar on Managing Orthostatic Intolerance featuring Peter Rowe, MD, has quickly become one of the most popular in our series. The recording and slides are available on our site, as is a tremendous printed resource from Dr. Rowe's clinic at Johns Hopkins.

There are several clinical trials enrolling CFS subjects at academic centers and clinics around the country. Search for "chronic fatigue syndrome" at http://www.clinicaltrials.gov/ct2/search.

You Matter

With fall comes frequent reminders to get your flu shot. In the U.S., this year's vaccine is a trivalent combination that guards against two strains of seasonal flu and H1NI, and it's given in just one dose. Every year we receive questions about whether the flu vaccine is appropriate for people with CFS. Dr. Charles Lapp of the Hunter-Hopkins Center recently shared his guidance that he continues to advise CFS patients seen in his practice against getting the flu shot unless the individual has safely taken the flu shot in the past or has a co-morbid condition (such as lung disease) for which the flu shot is strongly recommended. For treatment of the flu, Dr. Lapp favors Relenza, which has the greatest activity against H1N1. Consult your health care professional to learn what's best for you.

Exercise may have eight letters in the dictionary, but it is a four-letter word in the CFS community. The very definition of CFS requires that physical activity provoke symptoms, yet exercise is often suggested by well-meaning individuals and health care professionals as a cure to what ails in our "just do it" culture. In "The E Word," Jennifer M. Spotila offers a careful assessment of exercise in the context of CFS and provides insights from exercise experts who also understand the unique challenges of CFS and its characteristic post-exertional relapse.

Writer Dorothy Wall reviews a new book by New York Times writer Melanie Thernstrom, The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering. Wall, the author of the highly acclaimed Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome, writes that Thernstrom's book has "double-relevance" to those with CFS and other neuroendocrineimmune conditions and offers her opinion that the book will, "comfort and inform those who suffer pain, and encourage compassion in those who don't."

News & Notes

Internist Dr. Morris Papernik will address conditions that frequently co-exist with CFS in our next webinar, "Comorbid Conditions: The Alphabet Soup of CFS," on Oct. 21 at 12:00 PM (Eastern). This will be the 16th program in our 2010 Webinar Series, with a few more high-interest topics still to come this year. Check out the schedule through year-end and recordings of past programs.

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 Wisconsin ME/CFS Association will host its fall seminar on Oct. 23 in Madison.

The UCLA AIDS Institute will host a one-hour presentation by Judy Mikovits, PhD, on Oct. 8 titled, "MLV related viruses in neuroimmune disease and cancer: Is XMRV or PMRV the pathogenic variant or does it take two to tango?"

On May 19, the CFIDS Association and other members of the Overlapping Conditions Alliance launched the Campaign to End Chronic Pain in Women with a well-attended briefing in the U.S. Capitol building hosted by the Congressional Women's Caucus. Members of the U.S. House of Representatives Energy and Commerce Committee that handles the authorization of health agency programs have expressed interest in holding a hearing on chronic painful conditions. Add your voice to others who would like to see more research and medical attention brought to disorders that collectively affect more than 50 million Americans.

Our summary of the 1st International XMRV Workshop was recognized by the popular podcast "This Week in Virology" as a Weekly Science Pick.