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Introduction: The NIH and CFS


By Craig Maupin at

In 2001, Dr. Stephen Straus was giving an interview to a reporter for the New York Times. Straus is the director of the National Center for Alternative and Complementary Medicine (NCCAM) at the National Institutes of Health (NIH). He frequently hits the road promoting the integration of alternative medicine into mainstream medine. But on this day, Straus took a break from alternative medicine to elaborate on his perosonal views toward chronic fatigue syndrome (CFS). “Individuals who have [CFS] for many years lose hope. They then take on a series of maladaptive behaviors which sustain their illness, because they become so focused and so phobic.”

Within a year of Straus’ comments, Laura Hillenbrand, the critically-acclaimed author of Seabiscuit, discussed her own experience with CFS. Hillenbrand spoke candidly about her experience with medical professionals who addressed CFS subjectively by “…making assumptions about my character and implying that I was somehow responsible for this illness.”

Hillenbrand and Straus’ comments seem to reflect a wide divide -- a history of mistrust between CFS sufferers and government agencies. Many advocates believe the actions, behavior, and stewardship of government agencies, including the NIH, have contributed to a growing societal apathy and stigma toward CFS. As the new century dawns, many CFS advocates are saying that the foundation that Straus laid for CFS at the NIH has fostered a bias and apathy toward CFS within the NIH.

CFS Research Funding remains stagnate

The NIH program has long been criticized by CFS advocates for being underfunded and under-prioritized. A CFIDS Association of America (CAA) report published in 2004 set forward some stark numbers. According to the report, the NIH budget was being infused with new funds from 1999-2003 at the same time the CFS program was reeling. By 2003, NIH funding for external CFS had dropped to 3.9 million dollars, of a 27 billion dollar NIH budget. Even more striking, according to the CAA, much of what the NIH was classifying as CFS research was being plowed into general studies on other ilnesses and being “double counted”.

On March 22, 2005, CAA Executive Officer Kim McCleary organized a conference call of advocacy leaders of 16 conditions funded by the NIH at less than 21 million dollars a year. According to McCleary, many of those leaders reported hearing the same comments from NIH staff, “We don’t believe in this condition”, “This is simply not a priority for our institute.”, and “We don’t get enough good fundable applications”. McCleary also said “the challenge of funding multisystemic illnesses within the NIH’s segmented structure” was also a topic of conversation among the conference call’s participants.

New Leadership

Amidst this backdrop, a new group of NIH officials have assumed responsibility over the CFS program. The new leadership believe they can win the trust and confidence of the CFS community. More importantly, they say they want to open lines of communication with and build a cooperative relationship. All that is needed is time, patience, and a chance.

During the compilation of this report, NIH officials stepped up to answer questions about the CFS program. And remarkably, some common threads surfaced. Most importantly, both the NIH and CFS advocates want a strong NIH research program built around a mutual beneficial relationship that seeks scientific answers.

Despite skepticism and mistrust, many CFS advocates feel the CFS program at the NIH can prosper. CFS research represents a new scientific frontier. It is the very challenge of that frontier that also offers scientists an unprecedented opportunity to make a name and blaze new trails. Exclusive findings have been published for CFS that are shared by no other illness. Many CFS advocates believe that the only thing separating CFS research from progress, is acceptance of these past research findings, along with strong financial, scientific, and societal commitment from federal agencies.

In the following report, the NIH program for chronic fatigue syndrome (CFS) is explained in full.  The CFIDS Report spoke to the key leaders, past and current, at the NIH (Hanna, Hoffeld, Dean), as well as current stakeholders of the CFS program. What is the structure under which CFS research is funded at the NIH?  Why was the CFS program recently restructured? Who is now in control of the CFS program? How are CFS grant proposals classified and reviewed?  What is the NIH's vision for future of CFS research at the NIH?  And finally, what are the CFS community’s concerns?   The following report answers these questions. 


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Craig Maupin can be reached at