Will the CFS Advisory Committee (CFSAC) continue?

One recent question on the minds of many CFS advocates is whether or not the CFS Advisory Committee at the Health and Human Service Department will continue.  A decision on the committee should arrive in September of 2008.  The CFS Advisory Committee is a fractious issue among many CFS advocates.  Some advocates believe the committee has performed a solid job in advancing the primary issues of concerns of the CFS community, even though the committee’s recommendations for CFS have largely been ignored.   Other advocates believe the recommendations of the CFSAC, which generally are for more funding for the CFS research programs, fail to take into account the narrowness of the research initiatives at both the NIH and CDC.

There are two issues in regard to the continuance of the CFS Advisory Committee that bear mentioning.

1.   The first issue is that the requests of the CFS advisory committee generally coincide with the interests of William Reeves, who heads the CDC CFS research program, and Eleanor Hanna, who head up the NIH research effort. Increases in funding for CFS comprise the bulk of the CFSAC’s requests. Both program heads would, understandably, welcome an infusion of funds.

2.  The second issue is that the philosophies of Reeves and Hanna are controversial. Some advocates do not want to see the CFS programs at the NIH or the CDC get more funds until the philosophies and investments of those programs begin to show more balance or, at least, are better understood. The only CFS research effort that I see having wide support at this time is the Tufts University study at the NIH, a study seeded by the CFIDS Association of America and funding by the ORWH.  

Whether you feel the CFSAC should continue or not (both have their strong arguments), a decision by the Health Department to discontinue the CFSAC would be a signal to the CFS community that things may be getting worse, rather than better.  And, whether or not advocates agree with the requests of the CFSAC, the committee’s continuance in no way impedes possible changes to those requests in the future. The committee does provide an opportunity for input.   It will be interesting to see what happens.

CAA Symposium on CFS research.

Since Dr. Suzanne Vernon became the scientific director at the CFIDS Association of American (CAA) early this year, there has been a great deal of curiosity as to what the CAA’s next move will be. In November 2007, the CAA announced that it had recently opted out of a contract with the Centers for Disease Control.   Shortly thereafter, Vernon left the CDC program to assume the scientific director position at the CAA, a bold move by anyone’s measure.  As Vernon assumed her new position, the CAA quickly announced a change in direction, focusing on the building of a privately-funded research initiative.

Vernon and the CAA held a Webinar on the current status of CFS research this summer. The symposium gave Vernon an opportunity to present her ideas on the status of CFS research, as well as present a possible future direction that the CAA would like to take CFS research. Streaming audio and a Powerpoint of the presentation can be viewed here:

Click here:  for CAA Research Webinar with Suzanne Vernon

Kerr's Presentation Now Online

While the federal health agencies have limited their inquiry of CFS mostly to the brain, privately-funded research has supported a much more open inquiry.    Jonathan Kerr's  research at St. George's University in London in the U.K is one such example of what the freedom of private funding can do.   Unlike the CDC's approach, which limited its findings to the areas of the brain, Dr. Kerr worked with the entire gene subset.   He is open to subgrouping as well, operating under the assumption that not all people captured by CFS definitions share the same illness.  

A video of Kerr's presentation at the "International Symposium on Viruses in Chronic Fatigue Syndrome" is now available online.   A link may be found at the following address: 

Click here

Kerr's research is funded by ME Research UK, the Irish ME Trust, and the CFS Research Foundation.   His success is also due to the private contributions of the CFS/ME community.

A Disease Like No Other

Some of you have noted the addition of a new series to the CFIDS Report.  “A Disease Like no Other” takes a look at what makes CFS unique. This is a different approach to previous articles on CFS. Most articles talk about what makes CFS similar to other illnesses.   This series is about what makes CFS different.  The series contains five parts, each obtained by pressing ‘next’ on the article navigation bar or going to the article navigation page. The final part of the series is the article of which I am the most proud, an article on the unique personal costs of CFS.   Click here...!

What separates CFS from other illnesses is often not a physical symptom or symptoms, but the unusually devastating cost of CFS to its sufferers.   CFS, as an illness, can reach into all of the valued areas of life, affecting job, finances, family relationships, and friends. CFS is, truly, devastatingly unique.  CFS also carries a unique personal cost,  and this article series showcases that cost in a way readers can understand.

Private Funding

Another popular article has been the article on private funding opportunities. The article lists five opportunities for privately funded CFS research.   Click here!

Scientific Policy and the Stigma of CFS

An outstanding article appeared recently in the "Journal of Chronic Fatigue Syndrome".  The article, a exploration of the stigma associated with CFS, is worthy of a look from anyone who is interested in learning more about current CFS research and trends.    My writeup sums up the key points, and it can be accessed here:    Click here!

Best Wishes To All,

            Craig Maupin