The Congressional Briefing on CFS

On May 8, 2008, the CFIDS Association, with the help of Senator Tom Harkin (D-IA), hosted a congressional briefing on CFS in the Capitol building. The event was attended by 45 people including staff from the offices of Senators Harkin, Joe Biden, John Kerry, Evan Bayh, Daniel Inouye, Bryron Dorgan, John Cornyn, Tom Coburn and Kay Bailey Hutchison; staff from the office of House speaker Nancy Pelosi and the office of Representatives, Frank Pallone, Maurice Hinchey and Nydia Velazquez, as well as local CFS advocates and several CFIDS Association board members.

The briefing featured an introduction by Association president & CEO Kim McCleary and presentations from Anthony Komaroff, MD, Lucinda Bateman, MD, and NPR’s Scott Simon, who is a close friend of SeaBiscuit author and CFS patient Laura Hillenbrand. A question and answer session followed.

The goal of the event was to better inform lawmakers and their staff about the seriousness of CFS as a national health priority and to encourage a stronger federal response to the illness. 

Here are excerpts from the presentations given at the briefing:

From Kim McCleary,
CFIDS Association president & CEO:
“Our purpose this morning is to bring you up to date on the latest scientific findings with a presentation by Dr. Anthony Komaroff; to bring you closer to the challenges of patient care that doctors like Lucinda Bateman face daily in their clinics; and to share a portrait of the personal effect this condition has on those with it, through the eyes of Scott Simon, a close friend of CFS patient and award-winning author Laura Hillenbrand. Laura would be here herself to share her story, but she is too ill even to make the car trip from the northwest part of the city.

“Our purpose this morning is to impress upon you that the burden CFS imposes—on the individual, on families, our communities and the nation—warrants a more potent federal response. From a policy perspective, we can no longer afford not to do more to solve this growing health problem.”

From Anthony Komaroff, MD, Harvard Medical School professor and CFS expert:
“. . . So looking back over the last 20 years, I think there’s been undeniable progress in understanding what this illness is. But all of us—doctors, patients and their families—remain terribly frustrated by [CFS], because we don’t yet have the knowledge we need to cure it. But there are now many laboratories all over the world that are studying this illness.

“The progress that has been made is attributable, of course, to public and private investment in research. It won't surprise you to learn that I think there should be even more public and private funding for research on this illness. I think the best recent evidence in support of that is the success of the CDC’s increased research budget over the past several years. It’s a shame that in this and coming years, that research budget has been cut back and that NIH support also is lagging behind what it was several years ago.

“Today we have powerful new research technologies and tools available that we didn't have and didn’t ever dream we would have. We can watch the brain at work when it is challenged in different ways, without touching the patient or subjecting the patient to any risk. We can study the cells of the blood or of a diseased organ and determine which genes in those cells are turned on and which turned off—powerful clues as to what is causing the disease. We can find novel infectious agents much more easily than we could 20 years ago.

“We are on the threshold—with this illness as with others—of learning fundamental things about how it affects the body and what its causes are. And that’s what you need to know in order to cure it, once and for all.”

From Lucinda Bateman, MD, CFS expert and activist:
“You probably hear from constituents with CFS about the problems they encounter finding a doctor, getting through the disability process and gaining appropriate accommodations from schools and from employers. I’ve cared for hundreds of CFS patients and have met thousands more over the years at meetings, conferences and Lobby Day events. I know and share their frustrations. Although it can be overwhelming to be a CFS expert, it is not because of the challenging nature of the illness or the patients I greatly respect who have trusted me with that label. It is because I am only one faced with thousands in need, and there are too few of us who identify ourselves as CFS providers to meet the demands for care.

“As strange as it seems, Congress can help build the ranks. Congress can help me and help prepare my colleagues to provide better care for people with CFS. Right now, CFS costs the U.S. economy $25 billion a year in medical costs, disability payments and lost productivity. A tiny fraction of that sum applied to medical education and services would be a wise fiscal investment, and a humane one.”

From Scott Simon, award-winning journalist, host of NPR’s Weekend Edition and close personal friend of SeaBiscuit author Laura Hillenbrand:

“In my life as a journalist and a broadcaster, I have witnessed a lot of human tragedy at the site of earthquakes, war, famine, disease and poverty. Still I am unnerved to realize that across this country alone, there are four million Laura Hillenbrands living among us. Four million people whose lives and potential are severely narrowed by a disease we seem to be doing too little to confront and control.

“Yet Laura knows that she is one of the fortunate ones. She has a loving husband who has saved her life in so many ways. She has access to medical care and physicians who take her and her illness seriously, even though few of their treatments have brought relief. She has a home and friends and family. She has a rare talent that allows her to earn a living while painstakingly accommodating her illness. She has another book under way that is eagerly awaited by millions of fans around the world, from Laura Bush to Iraqi schoolchildren, who have been enthralled by the greatest horse story ever written.

“Perhaps in getting to know Laura, you can better appreciate the 80 percent of CFS patients who haven’t been diagnosed, and most of whom don’t have access to the kind of care that Dr. Bateman provides her patients; or the kind of hope that Dr. Komaroff inspired in his description of promising research advances; or the kind of empowerment that Kim and the Association provide through their work to make CFS visible, credible and conquerable.

“I hope that you will help establish research into CFS as a higher priority. For Laura. For Jennie. For Brian. For Cari. For Patrick. For Avis. For Mark. For Jane. For Adam. For Elly. For Cheri. For Cort. For Jennifer. For Shannon. For Alex. For Wilhelmina. For Kamilah. For John. For the four million Americans you serve who now live in the shadows of this devastating illness called chronic fatigue syndrome. If their lives could be unlocked, their energy and grace can truly help light the world.”

See this month’s From the Desk of Kim McCleary “A Capitol Investment” for another story about the May 8, 2008, congressional briefing.

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The CFIDS Association fights for the rights of people with CFS and their families by advocating for more research and better public policy. Your donations make this work possible.

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