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In This Issue
FROM THE CEO'S DESK
OTHER RESEARCH NEWS
This month's issue of CFIDSLink is extra long, due to all the research and media news to share. You will find some new sections, like "Journal Highlights," that will become regulars. Next month, we will introduce a fresh appearance. In the meantime, look out for Link "extras" with breaking news and information between monthly issues.
FROM THE CEO'S DESK
The Association is intensifying efforts to build a critical mass of rigorous research that validates the biological basis for CFS and leads to improved methods for diagnosis and treatment. We are transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research. Read more about how we're putting research first.
A team of Japanese researchers led by Rika Furata at the Japanese Red Cross has reported no association between XMRV and CFS or prostate cancer in a paper published in Retrovirology on Mar. 17, 2011. They found low levels of anti-gag antibody reactivity in 2% of the 100 CFS subjects, 3% of the 67 prostate cancer subjects, and 1.6% of the 500 healthy controls tested, but XMRV genes were barely detectable and they could not detect XMRV RNA or DNA in the blood. The authors write that the antibody results suggest limited replication of XMRV in vivo or cross-reactivity. Hirohiko Kuratsune recruited the CFS patients from his CFS clinic at Osaka University. He is considered the top CFS physician in Japan.
We have recently confirmed that Phase III of the Blood XMRV Scientific Research Working Group's four-part study is proceeding. Sample collection is presently under way and results of participating labs' tests for XMRV and polytropic MLVs are expected this summer. We have also confirmed that the study being funded by the National Institutes of Allergy and Infectious Diseases (NIAID) and coordinated by Ian Lipkin at Columbia University will proceed as planned. Sample collection for that study has not yet begun.
The Mar. 17, 2010 issue of Nature, one of the world's top science periodicals, features a four-page article about XMRV and CFS, "Fighting for a Cause." Writer Ewen Callaway visited WPI, interviewed researchers, physicians - including Dr. Daniel Peterson - and patients for the story. He talks about the topic in a Nature podcast. An editorial, "Cause for Concern," completes the extensive coverage in the world's most heavily cited interdisciplinary science journal. The editors conclude with, "Several lines of evidence suggest that CFS has an infectious origin. It is to be hoped that one day scientists will manage to pin it down once and for all."
Data presented by researchers at the National Cancer Institute, Tufts University and University of California-Davis at the 18th Conference on Retroviruses and Infections Disease (CROI) provide evidence that XMRV may be a laboratory recombinant of two mouse viruses. Science magazine reported this news in its Mar. 11, 2011 issue and shorter article appeared online on Mar. 8. Association scientific director Suzanne Vernon, PhD, summarizes the CROI presentations in "On the Origins of XMRV," based on the conference webcast and abstracts.
The March 2011 issue of Transfusion included four articles about XMRV, including an editorial by Hua Shan, MD, PhD, of Johns Hopkins University titled, "What is XMRV and Should We Be Worried About It?"
A detailed description of the Blood XMRV Scientific Research Working Group's four-part study was also reported in the March 2011 issue of Transfusion. Sample collection for phase III of the study is presently under way. Results of participating labs' tests for XMRV and polytropic MLVs are expected this summer. Blood safety was covered this week in the Wall St. Journal Health Blog.
Two more publications report failed attempts to detect XMRV/MLVs in CFS samples using PCR and serology tests. Researchers at CDC and Cooperative Diagnostics published their results in Retrovirology (Feb. 22, 2011) and Erlwein, et al from U.K. published a follow-up to their first study in PLoS One (Mar. 9, 2011).
Our XMRV Resources page is updated regularly with new studies, media articles and resources. Among the recent additions are these journal articles:
New Feature: Last month we began highlighting three recently published studies that bolster evidence of the biological nature of CFS and/or suggest possible therapies. Here are three more:
MIGRAINE OVERLAP: Headaches of a new type or severity is one of eight case-defining CFS symptoms. Two cohorts of Georgetown University CFS patients were evaluated using standard criteria for headache subtypes. 60% of CFS subjects had migraine without aura; 24% had migraine with aura; 12% had tension headaches only; only 4% had no headaches. Co-occurring tension and migraine headaches were found in 67% of CFS subjects. Sumatriptan (Imitrex) was beneficial for 13 out of 14 newly diagnosed CFS migraine subjects. The authors conclude, "Appropriate diagnosis and treatment with triptans may be beneficial for CFS subjects and their complex headaches." (BMC Neurology, Mar. 5, 2011)
SPINAL FLUID PROTEINS: Researchers at six institutions led by UMDNJ reported finding 738 unique protein markers in spinal fluid samples collected from 43 CFS patients and compared to samples from 25 neurologic post-treatment Lyme disease patients and 11 healthy control subjects. They were able to distinguish CFS from Lyme disease. Proteins identified in CFS patients only have been linked to Parkinson's disease and Alzheimer's. The authors have published the library of proteins identified to facilitate deeper explorations for diagnostic tools and potential therapies. (PLoS ONE, Feb. 23, 2011) The Association provided analysis of this study; the study garnered attention from "The CBS Evening News" and other news agencies (see below).
GYNECOLOGIC PROBLEMS COMMON: Gynecological histories of 36 women with CFS were compared to 48 nonfatigued controls. Women with CFS had more gynecological conditions, including non-menstrual pelvic pain, endometriosis and amenorrhea. CFS patients had a higher mean number of pregnancies. 76% of the women with CFS reported hysterectomy compared to 55% of the healthy women. 56% of the women with CFS had one or both ovaries removed, while only 34% of healthy controls had this surgery. The CDC authors conclude that more research is needed to clarify the chronological and pathophysiologic relationships between these conditions and CFS. (Journal of Women's Health, Jan. 2011)
OTHER RESEARCH NEWS
The International Association for CFS/ME is inviting abstracts for presentation as oral or poster sessions at the biennial meeting, "Translating Evidence Into Practice." The meeting will be held in Ottawa, Sept. 22-25, 2011. Abstracts are due Apr. 2, 2011.
The research team led by Steven Schutzer of University of Medicine and Dentistry of New Jersey and Richard Smith of Pacific Northwest National Laboratory (PNNL) that recently published evidence of 738 unique proteins in the spinal fluid of CFS patients continues to receive positive attention. The team received one of the inaugural Gordon Battelle Prizes for Scientific Discovery. The award celebrates breakthrough achievements of laboratories managed by Battelle and is presently featured on the PNNL's home page. Last month, the research received national media attention from "The CBS Evening News" and hundreds of other outlets.
A study published Feb. 18, 2011 in Lancet compares four treatment approaches. "Falling Off the PACE" provides analysis of the study and "Too Big to Fail" offers perspective on its controversial conclusions and the harmful media headlines. In response to the study and the press release issued and press conference hosted by the Lancet, CEO Kim McCleary submitted this letter to the editor.
On March 3, 2011 Chronix Biomedical and Hemispherx announced joint filing for a patent on a blood test for CFS based on changes to DNA. Hemispherix also held an investigators meeting on March 4-6, 2011 to discuss a new clinical trial of Ampligen.
Stanford University has launched a Chronic Fatigue Initiative dedicated to studying infection-associated chronic illnesses, including CFS. Under Dr. Jose Montoya's leadership, the center will provide clinical care and already has several research projectsunder way.
Today's Federal Register announced that the next meeting of the Department of Health and Human Services CFS Advisory Committee (CFSAC) will be held May 10-11, 2011 in Washington, D.C. The agenda is being developed. Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre-registered. Individuals who wish to address the Committee during the public comment session must pre-register by Monday, April 18, 2011, via email to email@example.com. Written testimony for distribution to committee members can be submitted to the same email address.
From Research!America: The U.S. House of Representatives recently passed H.R. 1 - a proposed spending bill that contains $1.3 billion in cuts to the National Institutes of Health (NIH). Since then, two additional short-term spending bills have been enacted that cut federal spending at a rate of $2 billion per week. The NIH has been unaffected by these cuts, but as Congress moves to finalize FY 2011 appropriations, it is essential that we speak out now to let Congress know that cuts to NIH are unacceptable. Cuts to NIH will hurt job creation, slow down the discovery of new drugs and life-saving treatments, and will have a disproportionate impact on job losses among early-career scientists. At a time when other nations are increasing investments in research, cuts in the U.S. will imperil our global leadership, our economic recovery, and our competitiveness in medical discovery and innovation. Congress needs to hear from research advocates now. We urge you to sign this petition to oppose cuts to NIH funding: http://www.ipetitions.com/petition/preservenihfunding/.
Research!America is a nonprofit organization working to make research to improve health a higher national priority.
On Mar. 7, 2011, the United States Court of Appeals 9th Circuit awarded private disability benefits to CFS patient Samuel Salomaa, calling the insurance company's denial of benefits "implausible" and "illogical." Salomaa was employed by American Honda Motor Company for 20 years before becoming suddenly ill with CFS in 2003. He was approved for Social Security disability, but was denied private disability payments. Salomaa appealed and won his case in spite of the lack of objective laboratory evidence. "In this case, the plan abused its discretion," wrote Judge Andrew Kleinfeld. Read more about this important case.
The House of Representatives, the Senate and the White House continue to battle over current year funding and the possibility of a government shut-down looms if agreement is not reached (or another short-term accord passed) by Mar. 18. Republicans in both houses are proposing deep cuts to domestic programs including medical research, while Democrats' proposals are closer to the President's request. Even deeper cuts are expected when lawmakers get around to setting the budget for FY12.
The federal CFS Advisory Committee is expected to hold a meeting in May, although dates have not yet been announced. A key topic will be the assessment of research following the NIH State of the Knowledge Workshop on ME/CFS.
The Wall Street Journal continues its prominent placement of news about CFS. Today's print issue features an article, "More Clues in Mystery of Fatigue Syndrome," by Pulitzer-Prize winning journalist Amy Dockser-Marcus. The article begins on the front page of the Personal Journal section of the paper and continues on page D4 where it fills half the page. The online version of today's WSJ article (titled, "Unlocking Chronic Fatigue Syndrome") includes an essay by Molly J. Billings about her life with CFS; a timeline of Molly's path to diagnosis; a video of Dr. David Bell and long-time patients; and a timeline of XMRV.
Katherine Hobson writes about the upcoming NIH ME/CFS State of the Knowledge Workshop in today's WSJ Health Blog, drawing attention to Dockser Marcus's article about CFS research in "The Hunt for Biological Causes of CFS."
The front page of today's Chicago Tribune introduces the latest article from reporter Trine Tsouderos about XMRV, CFS and the scientific controversy playing out in laboratories and the media. Tsouderos is the first to report comment from Robert Silverman of the Cleveland Clinic, about the possibility that XMRV may be a contaminant. "'I am concerned about lab contamination, despite our best efforts to avoid it,' Silverman wrote in an e-mail, adding that similar cell lines 'are in many, many labs around the world. Contamination could come from any one of a number of different sites.'" Silverman's team first discovered XMRV in prostate cancer cells; he tested CFS samples for the Whittemore Peterson Institute (WPI) and that data was included in the original report in Science. The article also appears in today's Los Angeles Times.
AMA Morning Rounds is a weekday briefing of news and studies sent to members of the American Medical Association each morning. Today's edition includes the following:
Studies refute XMRV association with chronic fatigue syndrome.
The Chicago Tribune (3/18, Tsouderos) reports that despite a high-profile study published in Science in 2009, a "European research team this week reported being unable to find any evidence of XMRV in the blood of people" diagnosed with chronic fatigue syndrome (CFS). And that is just the "latest in a stream of studies in which researchers looking for the retrovirus in the blood of both sick and healthy people have come up empty." Some studies suggest the new virus was nothing more than "a laboratory contaminant." The 2009 study leaders, however, "strongly deny" that contamination skewed their findings, although biologist Robert Silverman, who worked on studies that linked XMRV to CFS and prostate cancer, told the Tribune he is analyzing a stored XMRV cell line "to determine if contamination occurred."
CFS was featured on "The CBS Evening News with Katie Couric" on Feb. 23, 2011. The report "Research breaks chronic fatigue stereotypes," focused on the new research study on spinal fluid proteins (see Journal Highlights above). Although the report was brief, the program is viewed nightly by 6 million households. The "CBS Early Show" covered CFS and the new research on spinal fluid proteins on its Feb. 24, 2011 program. This research was covered by hundreds of other news outlets, including the Associated Press.
Pulitzer-Prize winning journalist Amy Dockser-Marcus extended her coverage of CFS and XMRV with a detailed article that appeared on the front page of this weekend's Wall Street Journal. "Amid War on a Mystery Disease, Patients Clash With Scientists" explores tensions that have deep roots going back to the name of the condition itself, a poorly funded federal research effort that has too often strayed to behavioral and psychosocial issues, and decades of neglect by the medical community. Diverse opinions about the article have been posted on the Wall Street Journal's comments page and in discussion groups. Dockser-Marcus has written 30+ articles about CFS and XMRV for the Wall Street Journal and its Health Blog. As this and earlier articles reveal, she has built an extensive network of sources and is a close observer of the research, social and political issues central to the current controversy. Last weekend, CFS filled two pages of the Journal's Review section, thanks to Dockser-Marcus' coverage.
Major media coverage of the challenge of defining CFS (and how that impacts research findings) and its historical roots appeared in New York Times and Wall Street Journal.
- David Tuller: "Defining an Illness Is Fodder for Debate," examines the case definition and how the patients you select color the outcomes of research. (NY Times Health section, Mar. 8, 2011)
- Amy Dockser-Marcus: "The Puzzle of Chronic Fatigue Syndrome," takes a long and deep look at CFS through the eyes of David Bell, MD, and some of his long-time patients in Lyndonville, NY. (Wall St. Journal Review section, Mar. 5, 2011)
- Wall Street Journal video: "Lyndonville Outbreak of Chronic Fatigue Syndrome may have Ties to XMRV." (Wall St. Journal online, Mar. 5, 2011)
- Leonard Jason, PhD: "An Illness That's Hard to Live With - And Define," recounts the history of fatiguing illnesses and clusters of CFS-like illnesses over the decades. (Wall St. Journal Review section, Mar. 5, 2011)
Journalist John Falk shared his journey with CFS with readers of the Huffington Post. It's a powerfully honest disclosure about why he has hidden his illness from even the closest friends. Mr. Falk plans to write a series of articles about CFS and his experiences.
CEO Kim McCleary answers five questions that have prompted inquiries and concerns in, "Take Five."
The New Jersey Chronic Fatigue Syndrome Association will host "Riding the Chronic Illness Rollercoaster: What Does it Mean in Your Life?" featuring Patricia Fennell on March 20, 2011.
Dr. Nancy Klimas and Dr. Gordon Broderick are two of the five researchers who will discuss their latest studies of CFS and Gulf War Illness on March 26, 2011 at University of Miami (Florida).
On Mar. 29, 2011 the NY Academy of Sciences will host a webcast titled, "Pathogens in the Blood Supply," featuring Ian Lipkin of Columbia University and Judy Mikovits of the Whittemore Peterson Institute. Registration is required.
The National Institutes of Health (NIH) will convene a State of the Knowledge Workshop on ME/CFS Research on April 7-8, 2011. This conference is being organized by a steering committee comprised of NIH staff, researchers and patient advocates. The meeting will be open to the public and webcast. An agenda, speakers and details about registration are now available.
Denise Lopez-Majano, mother of two teens with ME/CFS, is organizing young patients and their family members to attend and give testimony at the spring meeting of the federal CFS Advisory Committee and to make visits to Capitol Hill. "Speak Up About ME, Invisible No More!" will take place on May 11, 2011. For more information, please visit http://www.speakupaboutme.org/.
P.A.N.D.O.R.A. will host a May 12 lobby day in Washington, D.C. to "Speak Up About ME" and support the recommendations of the federal CFS Advisory Committee. To participate contact Michelle Lonchar at firstname.lastname@example.org.
The second annual "24 Hours In the Enchanted Forest: A Race to SolveCFS" will be held June 18, 2011 in McGaffey, New Mexico. This endurance cycling event was started last year by Claudia Goodell in support of the CFIDS Association of America.
The sixth annual Invest in ME international biomedical conference on ME/CFS will be held May 20, 2011 in Westminster, London.
Click here for a complete listing of upcoming events.