Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 IN THIS ISSUE FROM THE CEO'S DESK RESEARCH NEWS JOURNAL HIGHLIGHTS POLICY MATTERS TREATMENT MATTERS NEWS & EVENTS Quick Links ABOUT USLINK ARCHIVEDONATE NOW FROM THE CEO'S DESK As the CFIDS Association narrows its focus to build a critical mass of rigorous research that validates the biological basis for CFS and leads to improved methods for diagnosis and treatment, the lessons learned by those on the front lines of the breast cancer, HIV/AIDS and autism movements are instructive. Here's a look at how recent events have shaped the often contentious boundaries between researchers, physicians, regulatory agencies and patient communities. RESEARCH NEWS In April, the National Institutes of Health hosted the ME/CFS State of the Knowledge Workshop, the first "state of" meeting in 10 years. M. Spotila, JD, participated via live webcast and prepared this comprehensive summary of the presentations. There are now at least 170 research studies and thousands of science and general media articles published about XMRV. The novel retrovirus and its association with human disease continues to spur intense debate. The publications of the past month are compiled here. We keep our XMRV resource lists current, adding new information regularly.Dr. Ian Lipkin, director of Columbia University's Center for Infection and Immunity, gave a presentation on June 24, 2011 at the Whittemore Institute titled "Microbe Hunting". In addition to describing his center's approach to pathogen discovery, Dr. Lipkin briefly discussed the multicenter study he is coordinating on behalf of the National Institutes of Health to look for evidence of XMRV in CFS patients and matched healthy controls.News about new and ongoing research initiatives is regularly updated on our Research1st site. Back to top JOURNAL HIGHLIGHTS EEG Spectral Data Distinguishes CFS From Depressed and Healthy Controls: A group at Harvard analyzed spectral data from electroencephalograms (EEGs) performed on 70 CFS patients (1994 criteria), 390 healthy controls, 24 subjects with major depression and 148 patients with prolonged generalized fatigue, a total of 632 subjects. Senior author Komaroff, MD, diagnosed the CFS patients. Ten factors were found to distinguish CFS from healthy and depressed controls, with the highest rate of differentiation among unmedicated female CFS patients and female healthy controls, without misclassifying the subjects with major depression as CFS. The model lost some statistical power when applied to subjects taking psychoactive medications; the authors suggest this may reflect a therapeutic effect on the brain function or may modify EEG measurements. "CFS patients manifest patterns of functional brain coupling that differ from those of normal controls. Such a difference of CFS brain physiology may help explain known differences in cognition, memory, sleep, and affect that afflict CFS patients." They report that chief among the distinguishing factors were those involved in the brain's temporal lobe function. (BMC Neurology, July 1, 2011) Mast Cells Implicated: Mast cells play important roles in allergy and anaphalaxis, as well as protection from infection and wound healing. They also play a role in the inflammatory process. This group at Tufts University led by Theoharis Theoharides, MD, PhD, observed that antidepressants are used to treat several conditions characterized by pain (CFS, fibromyalgia and interstitial cystitis), but that there was no known mechanism to explain the benefit they provide to some patients. To test whether these drugs might affect mast cells, they incubated human mast cells with several different classes of antidepressants and then stimulated the cells with substance P, a neuropeptide involved with pain processing. Only amitriptyline (brand name Elavil and other names) and prochloperazine (brand name Compazine and other names) inhibited mast cells. The authors suggest this finding may implicate mast cells in the pathogenesis of CFS. (Journal of Clinical Psychopharmacology, June 2011)Journal highlights and links to conference reports are updated regularly on our Research1st site at http://www.research1st.com/promising-cfs-research-findings/. Back to top POLICY MATTERS The Institute of Medicine released its report, "Relieving Pain in America: A Blueprint for Transforming Prevention, Treatment, and Research," on June 29, 2011. The press conference, an executive summary of the report, the full report and a statement from 32 organizations (including the CFIDS Association of America) attracted considerable media attention to the 116 million Americans who experience chronic painful conditions, and its high economic toll, costing the nation up to $635 billion annually. TIME, US News & World Report, Reuters and hundreds of other news outlets covered the story. The report includes several pages of policy recommendations. In particular, the IOM has recommended that "the Department of Health and Human Services develop a comprehensive plan with specific goals, actions, and timeframes... Given the burden of pain in human lives, dollars, and social consequences, relieving pain should be a national priority."The American Psychiatric Association is revising the Diagnostic and Statistical Manual (DSM). The CFIDS Association submitted its concerns about the first proposal for Complex Somatic Symptom Disorder on April 1, 2010 and responded to a second opportunity to submit comments on the latest revisions to SSD and new subtypes identified by the work group on June 14, 2011. Many other organizations and individuals concerned about these changes have submitted comments as well. Advocate Suzy Chapman has collated comments. The APA has extended the deadline for comments to July 15, 2011. Registration on the DSM-5 site is required in order to submit comments, but there are no other requirements such as having a professional affiliation or organizational connection. Back to top TREATMENT MATTERS With summer heat comes increased problems for those whose CFS includes orthostatic intolerance (OI). Two recent posts to Research1st take a closer look at OI. "The Outs and Ins of OI" provides a brief overview of OI, its diagnosis and management. Based on one of many excellent questions posed by readers, we followed up on the overlap of OI symptoms and anxiety with a second post, "Is It Anxiety or OI?" Be sure to read the comments for links to other resources and personal experiences that add dimension to the topic. A June 27 article in the (U.K.) Telegraph, "How gravity can knock you sideways" was also published in the Ottawa Citizen on June 29. Back to top NEWS & EVENTS The second annual "24 Hours In the Enchanted Forest: A Race to SolveCFS" was held June 18, 2011 in McGaffey, New Mexico. The event raised more than $10,000 for the Association's research program. Goodell, who has had CFS since 1985, founded this endurance cycling event last year. This year's event attracted about 40% more racers and next year's event promises to be even larger. Thanks to , the SolveCFS Team (which included our scientific director Suzanne Vernon, PhD, and family members) and all the racers and volunteers who made it a success! You can view an action-packed video made by CFS patient Ken Holmes about the race and the cause it supports, and view a slideshow of events photos taken by Mountain Flyer Magazine photographer Leddy. A regular feature on our Research1st blog 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. Members of the AABB's Interorganizational Task Force provided the June 25 picks, and speakers at the Genetic Alliance's 25th Anniversary Conference were the subject of picks for July 5. From classic virus detective books, to Ozzy Osbourne's "rockin'" genome consult to NIH Director Francis singing "Hallelujah," you'll want to take a look!You can subscribe to new posts on Research1st by email. In June, we added 15 new posts about a variety of research-related topics. We hope you'll explore the site and join the conversation about exciting developments in CFS research!BioMed Central and Retrovirology's second biennial "Frontiers of Retrovirology" conference will be held in Amsterdam, October 3-5, 2011. Abstracts are due July 15, 2011.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." Back to top 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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