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2004 report on chronic fatigue languishes at HHS.

WASHINGTON -- All the hoopla over findings about a genetic basis for chronic fatigue syndrome has overshadowed the fact the recommendations made in 2004 by the Department of Health and Human Services' Chronic Fatigue Syndrome Advisory Committee have never been sent to the secretary of the Department Health and Human Services despite stipulation to do so in the charter of the 4-year-old committee.

At the committee's meeting, Dr. William C. Reeves, chief of the Viral Exanthems and Herpesvirus Branch of the Centers for Disease Control and Prevention (CDC) and head of its chronic fatigue syndrome (CFS) public health research program, said that agencies like the CDC are carrying out many of the recommendations "without top-down [orders]." Committee members voted unanimously to demand a written response to their 2004 recommendations--something that several congressional members have been trying to secure as well--and to request that the HHS Secretary attend their next meeting.

In its recommendations, the committee had requested the establishment of several Centers of Excellence for CFS as well as the promotion and funding of research on CFS in children and adolescents, and various other research, treatment, and educational initiatives.

Also during its meeting, the committee heard findings from a study by the CDC that strengthened evidence of a genetic role and biologic basis for the illness.

The clinical study, the largest to date on CFS, found that people with CFS have certain genes and gene activity levels related to the body's stress response that render them more susceptible to developing the illness.

The findings point consistently to genetic changes related to the hypothalamic-pituitary-adrenal (HPA) axis and to sympathetic nervous system activity.

The CDC estimates that more than 1 million adults and children in the United States have CFS, which is characterized by debilitating and unexplained headaches, fatigue, joint and muscle pain, problems sleeping, and impaired memory and concentration.

The CDC study--coined the "CFS Computational Challenge"--involved 227 adult residents of Wichita, Kan., who spent 2 full days in a hospital undergoing clinical and psychiatric evaluations, sleep studies, assessments of cognitive function and autonomic nervous system function, and extensive blood evaluations that included an assessment both of their genetics and the activity levels of 20,000 genes. The patients were selected from thousands of individuals in Wichita who participated in a population surveillance survey that the CDC ran from 1997 to 2000 to learn about CFS.

About one-quarter of those tested as inpatients met the formal definition of CFS; they were matched with healthy controls based on sex, race and ethnicity, age, and body mass index.

Another similar proportion had unexplained chronic fatigue but did not meet the criteria for CFS. And a fourth group met the criteria but also had melancholic depression, which doesn't fit the diagnostic criteria.

The CDC gave the data collected from the hospital stays to 20 multidisciplinary investigative teams. One of the four teams found that the expression levels of several of these genes could accurately distinguish the various groups of patients.

Another team found that five polymorphisms in three genes were important in distinguishing the patients. Overall, the teams' complex findings show that genetic differences between people with CFS and those without are related to various components of the HPA axis and the sympathetic nervous system, Dr. Reeves said.

The findings show, moreover, that there probably are at least four or five different molecular profiles that make up CFS.


Contributing Writer

RELATED ARTICLE: Doctors Skeptical: Is CFS Legitimate?

As chronic fatigue syndrome patient and activist Rik Carlson sees it, there is a stigma associated not only with having CFS, but with treating it as well.

"So many of the traditional Vermont medical community have determined that [CFS] is an unwarranted claim, making the search for a treating physician in my neighborhood fruitless," said Carlson, who lives in Burlington and leads the Vermont CFIDS Association. He spoke at a recent meeting of the Department of Health and Human Services' Chronic Fatigue Syndrome Advisory Committee.

Carlson read a letter he received from Dr. Terry Naumann, a family physician who wrote that he had practiced family medicine for 17 years before becoming disabled with CFS and being "disowned" by his partner when he revealed his diagnosis.

"Most MDs practicing now were never formally educated" about CFS, Carlson read from the letter. "There is a certain arrogance that develops in even the most conscientious medical school graduate who has just spent 7 years learning about illnesses, often 80-100 hours a week, who just doesn't believe he could have missed studying an illness that was really that important."

The importance of educating physicians about CFS diagnosis and management has been an ongoing issue for the advisory committee.

Physician education has also been an important issue for the CDC, which has worked for several years with the CFIDS Association of America on various education efforts, from CME-accredited self-study to medical school grand-rounds lectures, said Dr. William C. Reeves, who directs the CDC's CFS public health research program.

In Vermont, a bill passed by the state House and up for a vote in the Senate would fund the printing and distribution to physicians and other providers of a manual on CFS.

The CDC is planning to launch a national public awareness campaign on CFS targeting women and primary care providers.
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Author:Kilgore, Christine
Publication:Internal Medicine News
Geographic Code:1USA
Date:Jul 15, 2006
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