CFIDS News

Ninth Circuit Court decision on CFIDS
The U.S. Court of Appeals for the Ninth Circuit recently ruled that CFIDS can be a disabling condition. In the case Reddick v. Chater, (1998 WL 685798), the Administrative Law Judge had rejected disability on the basis of a diagnosis of CFIDS because the claimant went to aerobics once a week and later switched to an exercise bike.

The Appeals Court held that the Administrative Law Judge erred by failing to account for the effects of persistent fatigue on the claimant's ability to work. It also held that once a claimant produces medical evidence of an underlying impairment, his testimony of fatigue cannot be rejected without "clear and convincing reasons" for doing so.

The court found the claimant's activities were sporadic and punctuated with rest. "Disability claimants should not be penalized for attempting to lead normal lives in the face of their limitations," the court ruled in sending the case back to the Administrative Law Judge to award disability benefits.

Robert Alan Soltis, an attorney in San Diego who specializes in disability, said the ruling is especially significant for Californians, because it is the first Ninth Circuit decision on the issue of chronic fatigue syndrome.

Jazz pianist battles CFIDS
Keith Jarrett, one of the world's most popular jazz pianists, performed in November for the first time in two years. His mysterious, two-year absence from the stage was the result of CFIDS. Jarrett became ill during a 1996 concert tour in Italy, canceled all his concert dates and went home to rural New Jersey to focus on getting better.

In an interview for the New York Times shortly before that November concert, Jarrett broke his silence about his illness and ended speculation that he had AIDS or cancer. He acknowledged he was risking a relapse by performing again. "I'm at an unpredictable place in the healing process right now," he told the Times. "I'm better, but there's not enough of me that's better that I can count on myself fully. Still, I wasn't depressed, not in any kind of clinical sense, until recently. Because now that I'm finally getting together with the trio and starting to set up concerts-that's when contemplating not being able to play became really horrible. It's just too iffy."

Jarrett, 53, told the Times he didn't play at all for a full year, sometimes being unable to tolerate even the thought of music. "I didn't want to listen to it. Anything I heard I didn't like. If you can imagine that even listening to music drained you of energy-well, that was where I was at." When he eventually began listening to his own recordings, he found himself critical of his playing and growing eager for the opportunity to do things differently.

In the article, which appeared on Nov. 8, 1998, the seriousness of CFIDS is clearly portrayed through Jarrett's comments and writer Terry Teachout's carefully chosen words. In attempting to describe the helplessness he felt, Jarrett said: "Anything that is stressful, anything I don't normally do every day, makes me sick." Jarrett did not disclose the medical treatments he pursued, but he attributed the source of his particular illness to an interstitial bacterial parasite.

CDC information updated
The CDC has updated the information it provides about CFS. Pre-press copies of their new 20-page booklet, replacing the "Facts about CFS" booklet, were distributed at the AACFS biennial conference in Massachusetts. They are expected to be available shortly. Also, the CDC's website and telephone information on CFS has been updated. Check out the web site at www.cdc.gov/ncidod/diseases/cfs/cfshome.htm, and for recorded voice information, call toll-free at 888/232-3228.

Working Group on CFS/M.E. formed
The British Department of Health has formed a CFS/M.E. Working Group charged with developing guidelines for treating patients. The formation of the Working Group follows the 1998 report of The National Task Force on CFS/M.E., which found services for M.E. patients seriously lacking and recommended steps to ensure that everyone with the illness has access to a trained specialist.

While the Working Group has been criticized over its professional membership, which is heavy with psychiatric specialists, it also includes significant representation of persons with M.E. Leaders of various patient organizations and youth organizations, medical advisors to the M.E. Association, and persons with M.E. are included on the Working Group and on a Children's Group that will focus on children with the illness.