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Posted by Jill McLaughlin Sun, 20 Mar 2005 21:42:55 -0500

"Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society."

-- Dr. Nancy Klimas, President, AACFS


American Association of Chronic Fatigue Syndrome (AACFS)
Incoming President's Message

I am proud to assume the role of president of the AACFS, an organization with a pressing and compelling mission. The AACFS exists promote research, education, and advocacy to further our understanding and eventually develop effective treatments for this disabling illness and related conditions, such as fibromyalgia. There has never been a more important time to assume our role as clinician and scientist advocates in this important mission. Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society.

Data presented by Bill Reeves at the AACFS's conference in Madison in October 2004 underscored the need and just how poorly we have informed our medical community:

85% of the estimated 500,000 =AD 800,000 CFS patients in the United States remain undiagnosed. The loss of productivity is estimated at 9 billion dollars/annum, representing roughly half of the household income/impacted family ($20,000/year/household). This does not include the cost of health care, loss of tax revenue or other societal costs. Dr Reeves noted that the severity of illness is often as severe as patients with congestive heart failure or chronic obstructive pulmonary disease (COPD).

It is in this setting that we find funding for basic and clinical research dropping, with less than half the number of protocols funded in the past four years, from a starting point we all found wholly inadequate. Yet, the key research questions are basic to our understanding of human health, and should easily drive the much needed critical mass of investigators into the field. A Medline search reveals a sum total of nearly 3,000 articles pertaining to CFS in 2004, 1000 more than 1999. That is 1000 more than 1994, and 800 more than 1990, every 5 years we produce roughly 1000 new articles, reflecting a flat line of investigator growth in our field. Clearly, as an organization, we must prioritize working with governmental agencies and foundations to develop the research funding base necessary to speed the pace of new knowledge, and find effective strategies to bring that knowledge to the practicing physician.

Thankfully, talented investigators and clinicians that make up this organization have taught us much about CFS and FM. The Madison AACFS Research and Clinical Conference was a showcase of multidisciplinary studies and practical clinical knowledge, in a format that promoted scientific exchange and promoted collaboration. The AACFS Patient Conference inspired hope and brought patients and impacted families together for support and networking. The combined conferences ended with a splendid talk by David Bell, AACFS board member and chair of the CFS Advisory Committee to the Secretary of Health and Human Services that brought us all, patients, investigators and clinicians, into the role of advocates.

I hope, as President of the AACFS, I will lead the organization as it assumes an increasingly effective role in advocacy and education in the US and internationally. I hope you will join with me, and become active in your organization.

Nancy Klimas, MD

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