Politics & Science: AP story chronicles CFS funding battles

Dear Advocate,

An Associated Press article about CFS funding ran in more than a hundred newspapers over the weekend under a variety of headlines, the most frequent of which was “Politics Plays a Role in Disease Research.” Writer Mike Stobbe opens with a description of the television public service announcement that is part of the CDC/CFIDS Association national public awareness campaign. He then traces the roots of federal engagement in CFS research and education back to the 1980s and the cluster outbreak in Incline Village and advocate Ted Van Zelst’s first request before Congress for more research funding. He chronicles the diversion of funds by CDC to other disease areas and the reparation of those funds that patient advocates and Congress worked together to achieve.

Interviews with former Congressman John Porter, who led efforts to restore funding to CFS research, and Laura Hillenbrand, author of best-selling Seabiscuit: An American Legend and a person with CFS, balance a perspective offered by Dr. Peter Manu, a longtime critic of CFS who identifies himself as one of the last remaining skeptics. Near the end of the article, he includes a quote from CDC director Dr. Julie Gerberding in support of continued research and education, "The science is there and we need to respect and make the science more visible." You can read the article at http://www.washingtonpost.com/wp-dyn/content/article/2007/02/17/AR2007021701006.html 

While the article has shortcomings obvious to those knowledgeable about CFS and its history and politics, most notable the author’s incorrect usage of “chronic fatigue” interchangeably with “chronic fatigue syndrome,” and choice of other charged phrases, it justly acknowledges the role that advocates – within the patient community and Congress – played in getting CFS recognized and securing research funding for it. In fact, the Arizona Daily Star ran the article under the headline, “How Advocates Energized Chronic Fatigue Research.”

The article appeared on a couple of websites last week, ahead of the publication date assigned by the Associated Press. It has circulated among other disease advocacy groups and through the ranks of health coalitions. It appeared in the Washington Post on Saturday and will likely get attention on Capitol Hill given mention of Senate Majority Leader Harry Reid, former Representative John Porter and President Bush. We are already hearing from organizations and individuals expressing congratulations for the work that CFIDS advocates have done to keep government on its toes and to focus attention on a condition that might otherwise still be widely ignored and derided.

We can use this article and its emphasis on responsible advocacy to underscore the importance of continued investment in scientific progress being made now with CDC and NIH funds allocated to CFS research. We have an alert on our site at http://capwiz.com/cfids/issues/alert/?alertid=9392631&type=CO that enables you to write your members of Congress about the need to sustain CFS research funding.

The AP article can also be viewed as one of approximately 400 stories that have followed the November 3, 2006, press conference. Other recent national stories in PARADE Magazine, Woman’s Day, Fitness magazine and local stories that have attracted wider circulation, such as the Palo Alto News article about the Stanford University study of valgancyclovir as a treatment for a subset of CFS patients, are redefining CFS for the general public. Medical professionals have seen a lot more about CFS in their own publications, too. AMA News, Internal Medicine News and OB/GYN News have all reported on the campaign to educate health care professionals about the diagnosis and management of CFS. You can view all the recent coverage at http://www.cfids.org/sparkcfs/media-coverage.asp 

Thank you for your continued participation in CFIDS advocacy and for contributing to the successes we can achieve by working together.

K. Kimberly McCleary
President & CEO
The CFIDS Association of America