CFIDS Assoc: Research News

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IN THIS ISSUE

FROM THE CEO'S DESK

RESEARCH NEWS

JOURNAL HIGHLIGHTS

POLICY MATTERS

NEWS & EVENTS

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FROM THE CEO'S DESK

The Association's commitment to "Put Research First" continues to be demonstrated through action. Here is an update on recent steps taken to fulfill this pledge.

RESEARCH NEWS

There has been a big break in the search for a robust biomarker that would help clarify the diagnosis of CFS and guide treatment decisions. Amid the current controversy over XMRV, a report published May 26, 2011, ahead of print in the Journal of Internal Medicine, has received scant attention. But its implications are huge, especially because it extends earlier reports from the same group with larger patient cohorts and more sophisticated subgroup analyses. Read more about this important Association-funded study from Kathy and Alan Light of University of Utah, and their colleagues. XMRV continues to dominate headlines in the popular and scientific press, and to be the subject of intense debate within the scientific and medical communities. Two studies published in Science on May 31, 2011 are the latest ones to cast doubt on the association between XMRV, a larger family of murine leukemia virus-related viruses and CFS. The NIH has updated its website to reflect the findings of these latest studies and to affirm plans to continue with two multicenter studies of XMRV and CFS. At an international conference on HTLV and other retroviruses held this week, eight presentations and 15 posters provided some new data and a forum for discussion of the conflicting findings in the field. We keep our XMRV overview and resource lists current, adding new information regularly.The CFIDS Association has formed a new Scientific Advisory Board to guide and shape its research program. We are honored to have the benefit of diverse expertise from these esteemed experts representing a variety of scientific and strategic disciplines. Read the bios of our scientific advisors.

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JOURNAL HIGHLIGHTS

Immune Markers Distinguish CFS/ME Patients from Healthy Controls: Researchers at Bond University in Australia teamed with long-time CFS researcher and immunologist Klimas of the University of Miami to study the immune profiles of 95 CFS/ME patients compared to 50 healthy controls. Compared to healthy individuals, CFS/ME patients displayed significant increases in IL-10, IFN-ã, TNF-á, CD4+CD25+ T cells, FoxP3 and VPACR2 expression. The authors state that, "These results illustrate a severely compromised immunomodulation mechanism in CFS/ME where attempts to regulate or restore immune homeostasis appear to be impaired." (Journal of Translational Medicine, May 28, 2011)Heritable Predisposition of CFS Found: Utilizing the Utah Population Database, researchers at the University of Utah, Fatigue Consultation Clinic and Veterans Administration Medical Center in Salt Lake City searched linked medical records for the diagnostic code for CFS (780.71). 811 cases were included in the assessment. The analysis "shows clear evidence of significant excess familial clustering and significantly elevated risks for CFS among first, second, and third degree relatives of CFS cases. The results strongly support a genetic contribution to predisposition to CFS." The authors report that this is the first population-based analysis to comprehensively support this claim. (BMC Neurology, May 27, 2011) Inflammatory Cytokine and Chemokine Signature: Blood samples collected from 118 CFS patients who had tested positive for XMRV were compared to samples obtained from 138 controls subjects. Of the 26 cytokines and chemokines tested, 19 were different between patients and controls. The greatest difference was between interleukin-8, a major mediator of the inflammatory response, which was upregulated in cases compared to controls. The authors from the Whittemore Institute and University of Reno suggest that this data supports the description of XMRV-related CFS as an inflammatory disease and propose that multiplex cytokine and chemokine analysis in conjunction with XMRV testing "may serve as a useful diagnostic for CFS." (IN VIVO, May 16, 2011)Evidence of Brainstem Dysfunction and Altered Homeostasis: Researchers in Australia used statistical parametric mapping of brain MR images and compared against clinical scores for 25 CFS subjects and 25 normal controls. Midbrain white matter volume was observed to decrease with increasing fatigue duration. A strong correlation in CFS between brainstem grey matter volume and pulse pressure suggested impaired cerebrovascular autoregulation. These results are consistent with an insult to the midbrain at fatigue onset that affects multiple feedback control loops to suppress cerebral motor and cognitive activity and disrupt local CNS homeostasis, including resetting of some elements of the autonomic nervous system. (NMR in BioMedicine, May 11, 2011)Journal highlights are regularly posted to our new research-focused website and blog, Research1st. For more information about these and other studies of CFS published in 2011, please visit CFS Research Findings or use the tag cloud on the Research1st blog to find studies that match your interests. We have recently posted about microbiome research and the energy envelope approach to symptom management.

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POLICY MATTERS

Research on and treatment for chronic pain has been elevated on the federal policy radar through the Patient Protection and Affordable Care Act and annual appropriations legislation that funds the Department of Health and Human Services (HHS). The Institute of Medicine (IOM) will release its study of chronic pain at the end of June and a new HHS Interagency Pain Research Coordinating Committee is being formed. Updates on these activities were provided by top leadership staff from the National Institutes of Health at the 6th Scientific Meeting of the TMJ Association. At the meeting, members of the Chronic Pain Research Alliance updated researchers about efforts to advance policy on research for conditions that frequently co-occur (like CFS, FM, TMJ, endometriosis and vulvodynia), including the request for a congressional hearing on pain made on June 6 in anticipation of the IOM's report.

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NEWS & EVENTS

News coverage of CFS has been heavy over the last two weeks, following new publications in Science about XMRV and a request from the editors of Science that authors of the original XMRV study retract their publication. You can find all the media coverage here, but these articles in Scientific American and Nature are worth special mention since they reinforce the need for continued multidisciplinary research. The hosts of "This Week in Virology" and guest virologist Goff, PhD, covered the latest developments and addressed a lot of commonly asked questions in episode 136 of this popular science podcast.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 Goodell in support of the CFIDS Association of America. Our scientific director, Suzanne Vernon, PhD, and members of her family will be among this year's participants. Good luck to all the racers and thanks for raising awareness and funds for CFS!For young adults with neuro-immune illness, www.healKick.com is a full-featured social network designed to break the isolation they experience, created by and for young adults. A few highlights: IM Chat with other patients, find local patients on our Members Map, choose your own language to connect with people from around the world. Please help spread the word by simply clicking "Share" to inform young adult patients everywhere! The CFIDS Association is pleased to support this independent effort to bring young people together.The IACFS/ME will host the 10th International CFS/ME Research and Clinical Conference in Ottawa, Canada, Sept. 22-25, 2011. The conference theme is "Translating Evidence Into Practice." The CFIDS Association won $25,000 in the Chase Community Giving contest on Facebook in May. All funds will be used to support the Association's research program. The Association is competing in the Vivint Gives Back challenge on Facebook for $250,000 in cash prizes.We've started a regular feature on our Research1st blog that lists 5 "picks" selected by researchers, physicians, policymakers, other professionals, patients, advocates and caregivers. These picks represent articles, books, websites, films, etc. that they have chosen as particularly interesting, compelling or descriptive of science - either in general or in an area in which they have an active interest. Read the inaugural picks from May 25 and the second installment from June 5. You can subscribe to new posts on Research1st by email. We hope you'll explore the site and join the conversation about exciting developments in CFS research!

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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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The CFIDS Association of America | PO Box 220398 | Charlotte | NC | 28222-0398