From the CEO's Desk
CFIDS Association President and CEO Kim McCleary
Spring is traditionally a busy time in the CFS community, and this spring has been no exception. In May, there were literally dozens of education and awareness-raising events around the world in recognition of May 12, International CFS/CFIDS/ME Awareness Day. Research publications and advocacy events added to news, and media coverage ramped up to more than 1,000 stories in print, broadcast online and social media sources (compared to an average baseline of about 300 stories per month, according to our monitoring).
CFIDSLink is jam-packed again this month, even with the Extra! issue that we distributed in mid-May in addition to our regular issue. We will do the same this month as events warrant; you can also find daily updates on our Facebook page. We’ve made some recent changes to help our nearly 4,000 “fans” and countless visitors more easily identify posts from the Association. There’s something new there every day, as well as reminders about upcoming events, photos and links to just-published research and media coverage.
Please take a moment to check out the report on the newly launched Campaign to End Chronic Pain in Women. The May 19 event on Capitol Hill was highly successful and has attracted attention from the bi-partisan Congressional Caucus on Women’s Issues and other high-ranking members of Congress who indicate that they want to support the policy recommendations made in the detailed report released at the event. We are excited about this opportunity to join forces with other organizations and to make sure chronic, painful conditions are appropriately addressed as health care reform is implemented.
Finally, stay tuned for more news about XMRV. In spite of others’ reports that too little is being done to understand the association between CFS and XMRV, I anticipate that announcements about more data and new studies will accelerate over the summer months. The U.S. Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) are supporting research in this area and publications from these groups and others around the world are expected soon. These include:
- Koch Institute in Germany (presented at Centennial Retrovirus Meeting in Prague in April),
- Tufts University (presented on May 24 at the Invest in M.E. conference in London),
- Institut de recherches cliniques de Montréal (presented in late May at the Cold Spring Harbor Laboratory’s Conference on Retroviruses)
- and other institutions.
This summer, the Department of Health and Human Services (DHHS) Blood XMRV Scientific Research Working Group, of which Association scientific director Suzanne D. Vernon, PhD, is a member, will analyze results of analytical samples of XMRV processed by six laboratories (including the Whittemore Peterson Institute [WPI]) to standardize assay results. I serve on the Interorganizational XMRV Task Force convened by the American Association of Blood Banking (AABB) to monitor and make recommendations about communications on blood safety issues; this group has met regularly and is extremely active between meetings. Dr. Jerry Holmberg of the DHHS Office of Public Health and Science made an update on May 10 to the CFS Advisory Committee based on the work of these two groups.
Dr. Robert Silverman, the researcher at Cleveland Clinic who participated in the original publication on XMRV and CFS with the WPI, published a detailed review of XMRV in CFS and prostate cancer on June 1 in Nature Reviews Urology. This paper does a splendid job of outlining the current state of knowledge and implications down the road. Even though the full text is only available with a journal subscription or by paying a $32 single-article license fee, know that many other scientists will read it and perhaps take a stronger interest in CFS because of it.
In our continuing 2010 webinar series, we’re delighted to have three research-oriented programs coming up in the next six weeks: on the SolveCFS BioBank; the final installment of our three-part miniseries on the Association’s research program; and XMRV. Dr. Vincent Racaniello, host of the popular “This Week in Virology” podcast and a Columbia University professor, has accepted our invitation to help us understand XMRV, with help from Dr. Cindy Bateman, who is a collaborator on the University of Utah study of XMRV in CFS. We hope you’ll join us for all three upcoming webinars.
While XMRV attracts much of the focus, it’s important to remember that there are many other important research efforts generating new insights as well. See, for instance, the study from Dr. Gordon Broderick and colleagues reported in the “Research Matters” section of this CFIDSLink, as well as new grants issued by NIH that will support studies of infectious agents.
The CFIDS Association’s Board of Directors will be meeting this weekend in Chicago, one of three in-person meetings to supplement our monthly meetings by phone. The Board issued this statement on May 18 as blood donation guidance to the CFS community:
“The CFIDS Association of America reiterates its long-standing recommendation urging that individuals with CFS voluntarily not donate blood or organs. This recommendation is based on issues of blood donor safety and blood recipient safety. Research has demonstrated that orthostatic intolerance, low blood volume and infections are common in CFS. Until more is known about the role of various infectious agents in CFS, it is prudent for individuals with a past or present diagnosis of CFS to refrain from giving blood and donating organs to protect the safety of the blood and transplant organ supply for all recipients.”
Please stay tuned and stay engaged, and most of all, derive renewed hope from the many developments we’ve reported here and through our other communications channels. I am extraordinarily hopeful about the potential for all this activity to rapidly move us forward in the mission to make CFS widely understood, diagnosable, curable and preventable.
President & CEO
June 3, 2010
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