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In This Issue
FROM THE CEO'S DESK
NEWS & EVENTS
FROM THE CEO'S DESK
Nature is the world's leading general science periodical. Last month, five Nature Publishing Group journals featured articles about CFS. CEO Kim McCleary looks at NPG's coverage of CFS in "Nature's Call."
On July 27, 2011, Nature Reviews Neuroscience published a six-page article about chronic fatigue syndrome (CFS), "CFS: Understanding a complex illness." Presented in a Q&A format, four scientists involved with CFS research provided their "views on the condition, its causes and the future of research aimed at improving our understanding of this chronic illness." With thanks to Nature Reviews Neuroscience and Nature Publishing Group, the link to the full text will be available until September 8, 2011. Read more about Nature Publishing Group's coverage of CFS on Research1st.
In April 2011, the National Institutes of Health hosted the ME/CFS State of the Knowledge Workshop, the first "state of" meeting on CFS in 10 years.
- The NIH report of the ME/CFS State of the Knowledge Workshop was posted a few days ago.
- Jennifer M. Spotila, JD, participated via live webcast and prepared this comprehensive summary of the presentations for Research1st.
An independent consensus panel of international experts has proposed new criteria for myalgic encephalomyelitis (ME). The panel recommends use of this term and criteria as a replacement for CFS: "...it is more appropriate and correct to use the term 'ME' because it indicates an underlying pathophysiology." They propose one compulsory feature -- post--exertional neuroimmune exhaustion (PENE) -- plus seven symptoms from three subdivided symptom clusters: neurological, immunological and energy production/transport impairments. The criteria will be published in the Journal of Internal Medicine and are intended for clinical and research settings. There is sure to be more discussion about the recommended change in both the name and criteria - both have potentially far-reaching consequences for research, policy and education. Our Research1st summary links to Table 1 from the paper, which outlines the symptom criteria.
XMRV and its reported association with CFS has been the subject of 17 published studies, 15 of which have not found evidence of a link. The latest results are documented in Diagnostic Microbiology and Infectious Disease, published July 25. Keith Jerome at University of Washington and colleagues tested a total of 85 samples from same-sex twin pairs recruited to the Chronic Fatigue Twin Registry by Dedra Buchwald, MD. Twin pairs in this cohort, one of whom has CFS (by 1994 Fukuda criteria) and the other does not, have been studied extensively. The team used four PCR assays to test banked samples for XMRV under blinded conditions. Apart from one inconclusive result on a twin who does not have CFS, XMRV was not found in any of the twins with CFS. The authors conclude, "...our results do not appear to be consistent with the original report of XMRV being present in 67 percent of patients with CFS." We regularly update our XMRV overview and resource lists.
Dr. Alan Light of the University of Utah defines the term "biomarker" and describes how potential biomarkers are evaluated, a guest post on Research1st.com, "Shedding Light on Biomarkers." Dr. Light and colleagues published a study of potential biomarkers for CFS and FM in the Journal of Internal Medicine in May.
Dr. Leonard Jason and colleagues have a new publication comparing the empiric CFS case definition (Reeves et al., 2005) and the Canadian ME/CFS clinical case definition (Carruthers et al., 2003) with a sample of individuals with CFS versus those without. The empiric criteria identified about 79% of patients with CFS and the Canadian criteria identified 87% of patients. The findings were reported in the Journal of Clinical Psychology on Aug. 5, 2011 (available to subscribers or for a fee).
Study Estimates Rates of ME/CFS in England, Compares Case Definitions: The ME/CFS Observatory conducted a study of ME/CFS in three distinct areas of England to determine prevalence, incidence and the ability of three different definitions to detect CFS and ME/CFS. "The prevalence rate of cases meeting the CDC-1994 definition was 0.19%, of cases meeting the Canadian definition 0.11%, and of cases meeting [an Epidemiological Case Definition devised for this study] 0.03%." The paper concludes by reinforcing the burden represented by the illness (regardless of definition) and the need to improve identification of subgroups to strengthen research. "Both groups have high levels of need for service provision, including health and social care. We suggest combining the use of both the CDC-1994 and Canadian criteria for ascertainment of ME/CFS cases, alongside careful clinical phenotyping of study participants." (BMC Medicine, July 28, 2011)
Magnetic Resonance Tagging Reveals Impaired Cardiac Function: Professor Julia Newton's group at Newcastle University used a new method of assessing the shape, structure and function of the heart in this study of 12 CFS patients and 10 healthy controls. They found that compared to controls, "CFS patients have markedly reduced cardiac mass and blood pool volumes, particularly end diastolic volume: this results in significant impairments in stroke volume and cardiac output compared to controls." (Journal of Internal Medicine, July 27, 2011; accepted article approved for publication, yet to undergo copy-editing and proof correction.)
Journal highlights and links to conference reports are updated regularly on our Research1st site. Learn more about current research initiatives too.
The CFIDS Association of America has nominated four individuals to the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC) for terms beginning in April 2012. More information about the nominees can be found at Research1st.
A Research1st post made July 27, 2011 includes recent updates about the CFS Advisory Committee. For more information about the CFSAC, please visit the committee's website.
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services. There are three upcoming vacancies on the committee and individuals, organizations and institutions are encouraged to submit nominations. The most recent set of recommendations has been posted to the CFSAC website. An update on our Research1st site provides more details.
Sleep. It seems like it should be the most easily accomplished function of daily life. But for millions, including people with CFS, healthy sleep is elusive. Here are some resources from experts to help you understand sleep and ways to improve the quality of your sleep.
NEWS & EVENTS
The Sept. 2011 issue of Ladies' Home Journal, on newsstands now, includes an article about CFS titled, "Whatever Happened to CFS?" Several experts, including Lucinda Bateman, MD, Nancy Klimas, MD, and Association CEO Kim McCleary are quoted in the story. Although the article validates that CFS is a complex condition that can be challenging to diagnose, treat and live with, it contains some erroneous information and, in spots, portrays an over-simplified approach to managing the illness. Writer Margery Rosen was thorough in her research and empathetic when interviewing patients with whom we connected her; unfortunately, sometimes the article submitted is substantially revised in the editing process. We contacted LHJ editors to express our concerns about the overemphasis on exercise and diet as effective therapies, use of the term "yuppie flu" and other shortcomings of the published article. Their response was surprisingly indifferent and therefore we don't expect they will issue corrections. In spite of this, we encourage people to voice their reaction - positive and negative - to the article by registering to post "Comments" on the LHJ website.
Read our latest guest post at Research1st from Katrina Berne, PhD, clinical psychologist & PWC. In "I Can't Brain Today: I've Got the Dumb," she describes the cognitive dys-function she experiences and offers tips about how to compensate.
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. July 15th's picks came from researchers funded by the Association. Dikoma Shungu also provided an extended description for his selections about mitochondrial dysfunction.
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!
BioMed Central and Retrovirology's second biennial “Frontiers of Retrovirology” conference will be held in Amsterdam, October 3-5, 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."