The CFIDS Association of America

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March 2011

In This Issue

XMRV NEWS

JOURNAL HIGHLIGHTS

OTHER RESEARCH NEWS

POLICY MATTERS

MEDIA COVERAGE

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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.

XMRV NEWS

Data presented by researchers at the National Cancer Institute, Tufts University and University of California- 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 a 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.

A detailed description of the Blood XMRV Scientific Research Working Group's four-part study was reported in the March 2011 issue of Transfusion. 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 ative 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:

Analysis of XMRV integration sites from human prostate cancer tissues suggests PCR contamination rather than genuine human infection, Retrovirology (Feb. 25, 2011) "Walking on eggshells: PCR assays for XMRV detection," by S. Wiecek in BioTechniques (Feb. 23, 2011) Infection, viral dissemination and antibody responses of Rhesus macaques exposed to the human gammaretrovirus XMRV, Journal of Virology (Feb. 16, 2011) Severe restriction of XMRV replication and spread in cultured human peripheral blood mononuclear cells, Journal of Virology (Feb. 16, 2011)

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JOURNAL HIGHLIGHTS

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 town 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)

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OTHER RESEARCH NEWS

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. Montoya's leadership, the center will provide clinical care and already has several research projects under way. Back to top

POLICY MATTERS

On Mar. 7, 2011, the United States Court of Appeals 9th Circuit awarded private disability benefits to CFS patient 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 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.

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MEDIA COVERAGE

Brant

CFS was featured on "The CBS Evening News with 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.

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.

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 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 , 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 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.

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UPCOMING EVENTS

The New Jersey Chronic Fatigue Syndrome Association will host "Riding the Chronic Illness Rollercoaster: What Does it Mean in Your Life?" on March 20, 2011.

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 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.

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 Lonchar at mlonchar@....

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.

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Our Mission:

For CFS to be widely understood, diagnosable,

curable and preventable. Our Strategy:

To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. Our Core Values:

To lead with integrity, innovation and purpose.

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This email was sent to carlene.grimshaw@... by cfidslink@... |

www.cfids.org | The CFIDS Association of America | PO Box 220398 | Charlotte | NC | 28222