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In This Issue
FROM THE CEO'S DESK
NEWS & EVENTS
FROM THE CEO'S DESK
Round 1 of Chase Giving ends tomorrow and we need your help to win $25,000 so we can move on to Round 2 to compete for $500,000. Prize money awarded to the CFIDS Association will help fund CFS research. Please support up 10 of your favorite charities, including the CFIDS Association! Here's how.
Journal of Virology, researchers from the University of Utah, Fatigue Consultation Clinic and ARUP Laboratories have not been able to confirm a link between XMRV and CFS following a comprehensive study of 100 well-characterized CFS patients and 200 controls. The CFIDS Association's analysis of this study, "The Iteration of X," examines the methods used and the conclusions reached by the authors. In spite of the disappointing outcome, this team of researchers remains committed to looking for other infectious agents that might be involved in CFS as well as pursuing other promising leads.
For more about this study:
PLoS ONE, researchers at the U.S. Centers for Disease Control & Prevention reported finding XMRV in three of 162 prostate cancer tissue samples. "Our findings document a very low prevalence (1.9%) of XMRV sequences in prostate tissue DNA and absence of antibody positivity in all specimens. Combined these data do not support an association of XMRV or related MLV with prostate cancer."
The Department of Defense's Congressionally Directed Medical Research Program (CDMRP) includes CFS in its priority topics for the first time in FY11. The Association advocated for its inclusion during the FY11 federal funding cycle. This recognition gives researchers another potential source of funding, although applications still must successfully pass peer review. Interested investigators must submit pre-applications by May 25, 2011.
The NIH hosted the ME/CFS State of Knowledge Workshop on Apr. 7-8. You can find links to the webcast recording and other resources. Our summary report will be issued soon in an "Extra" issue of CFIDSLink.
The CFIDS Association issued a new Request for Applications (RFA) on Apr. 6, 2011, soliciting research proposals for studies that will advance diagnostics and treatments for CFS. The RFA is being widely circulated in the research community. Letters of Intent are due on June 3, 2011.
The AABB (formerly the American Association of Blood Banks) recently updated its XMRV Fact Sheet (posted May 2, 2011) along with a table summarizing published studies of XMRV and other murine leukemia virus-related viruses in human diseases and the general population. XMRV-related updates are regularly posted to our XMRV resources page.
PREVALENCE & MORBIDITY OF PEDIATRIC CFS: Researchers in the Netherlands collected data from general practitioners and pediatric hospitals about children with CFS age 10-18 years of age. They found 111 cases of CFS per 100,000 adolescents. CFS in adolescents was accepted as a distinct diagnosis by 51 percent of all responding GPs. Nijhof et al conclude: "These data strongly suggest that adolescent CFS should be regarded as a serious illness with corresponding consequences such as delay in educational and social development." TIME magazine's "Healthland" blog covered this study. (Pediatrics, Apr. 2011; open access)
SIMILARITIES TO LYME DISEASE: The Institute of Medicine published a comprehensive report on Lyme disease. CFS is addressed throughout the report. According to several studies, 11.6 percent of patients with Lyme disease have symptoms consistent with CFS six months after the tick bite. The report provides a comprehensive summary of the literature on Lyme disease and reveals many similarities to CFS in observed immune, endocrine and neurological abnormalities. (Institute of Medicine, Apr. 20, 2011; available online)
CFS AS NEURO-INFLAMMATORY STATE: Arnett and colleagues at the Australian National University review the evidence supporting a neuroimmunological basis for CFS, providing a strong case for inflammatory and infectious precipitants on the background of neurological changes associated with CFS. They address the shortcomings of behavioral therapies and suggest carefully constructed trials of centrally acting anti-inflammatory agents might quiet the cytokine storm seen in many CFS patients. They conclude: "CFS and related conditions are debilitating and intractable conditions that often strike patients at a time of their life when they would otherwise be at their most economically and socially productive." (Medical Hypotheses, Apr. 5, 2011)
The federal CFS Advisory Committee will hold its next biannual meeting on May 10-11, 2011 in Washington, D.C. The meeting is open to the public. The agenda, a status report on recommendations and testimony submitted by several individuals have been posted to the committee website.
Advocate Courtney Miller asked President Barack Obama about CFS research at an April 21 town hall meeting in Reno. The President replied, "Now, I will confess to you that, although I've heard of chronic fatigue syndrome, I don't have expertise in it. But based on the story that you told me, what I promise I will do when I get back is I will have the National Institutes of Health explain to me what they're currently doing and start seeing if they can do more on this particular ailment. Okay?" Send a follow-up message to the White House using this fill-in form.
Several organizations are planning policy-related events to engage lawmakers on May 12, International CFS/CFIDS/ME Awareness Day. P.A.N.D.O.R.A. and Speak Up About M.E. will host a May 12 Capitol Hill Lobby Day to support recommendations of the CFS Advisory Committee.
NEWS & EVENTS
We're delighted to report that the CFIDS Association was among the top 100 charities to win $25,000 in Chase Giving's spring contest. The winners were the top vote-getters at midnight, and they advance to Round 2 and the chance to win the grand prize of $500,000. In all, Chase will award $2.5 million in the second round.
Beginning May 19 you can cast your vote for the CFIDS Association of America. We'll post reminders on Facebook and CFIDSLink and will update you on our position on the leader board. Please cast one of your 5 votes for the CFIDS Association and encourage all your Facebook friends to do the same! Click here for STEP-BY-STEP instructions.
May 12 is International CFS/CFIDS/ME Awareness Day and many organizations and groups are conducting events and campaigns to draw attention and funding, including those listed above. Three links you might consider sharing with family, friends, media, policy-makers, lawmakers and others:
- Our four-minute video, "What Would You Do?" describes the symptoms of CFS and what people living with it most miss being able to do.
- Highlights from key 2011 journal articles that bolster evidence of the biological nature of CFS and/or suggest possible therapies.
- Link to an article, "The Puzzle of CFS," by Amy Dockser-Marcus at the Wall Street Journal.
Wondering about the origins of May 12 as awareness day? Activist Tom Hennessy selected the date 19 years ago because it is the birthday of Florence Nightingale, who inspired the establishment of the Red Cross and suffered a CFS-like illness for much of her life. Psychologist and Red Cross volunteer Romeo Vitelli describes Nightingale's work, activism and illness: part one and part two.
Laura Hillenbrand is featured on the cover of Natural Solutions magazine. The cover story describes her life with CFS. Laura is the award-winning author of bestsellers Unbroken and Seabiscuit.
Last month we ran a survey about how people use the internet to find information about CFS. 1,466 people responded; we'll share results in upcoming issues of CFIDSLink. Thank you for responding!
Join us on Facebook and Twitter (@PlzSolveCFS) for daily posts about research, policy and other news between issues of CFIDSLink.
The sixth annual Invest in ME international biomedical conference on ME/CFS will be held May 20, 2011 in Westminster, London.
The 15th International Conference on Human Retrovirology, HTLV and Related Viruses will take place June 4-8, 2011 in Leuven, Belgium.
The Sixth Scientific Meeting of The TMJ Association will be held June 5-7, 2011 in Bethesda, MD. CFIDS Association scientific director Suzanne D. Vernon, PhD, will chair one of the sessions.
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 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."
For a list of more upcoming events, click here.