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Summer 2002

CFIDS News
Keeping you up to date on recent events across the nation and around the world

New CFIDS guidelines cause furor down under
The CFIDS patient community in Australia is infuriated over a new set of clinical guidelines that claim CFIDS is not a disease.

The guidelines, developed under the auspices of the Royal Australasian College of Physicians, acknowledge that people with CFIDS often face “considerable” suffering and disability. But since there is not yet a known cause for CFIDS, the guidelines say it must be viewed only as a “recognizable pattern of symptoms.”

Simon Molesworth, president of the ME/Chronic Fatigue Syndrome Association of Australia, said the guidelines will encourage doctors to view CFIDS as a psychological illness and people with CFIDS as malingerers.

The Australian association has warned that the College of Physicians may be held legally liable if people with CFIDS become sicker because their doctors are following the advice in the document. The guidelines mention graded exercise and cognitive behavioral therapy as treatments doctors should consider for people with CFIDS.

Officials who helped write the guidelines say they are “an accurate sum-mation” of current evidence about CFIDS.

Three-year wait for some SSDI cases
The new commissioner for the Social Security Administration has told a House subcommittee that disability cases may take up to three years to process due to huge backlogs and depleted staffing levels.

Commissioner Jo Anne Barnhart reported on May 2 that, in the worst case, it takes 1,153 days to move a disability application from start to finish at the appeals council level. She called the situation “unacceptable” — especially since staff members need only seven days to actually work on each application. Short-term fixes are being made, and longer-term changes are being considered, she said.

Barnhart revealed that there are currently 500,000 cases pending review at the hearing level, twice as many as is considered “ideal” for current staffing levels. Similarly, there are 600,000 applications awaiting initial review, 50 percent more than ideal.

Efforts to hire more administrative law judges (ALJs) were slowly producing results. SSA still must hire 200 more judges to reach the optimum staffing level of 1,300. ALJs hear cases that are appealed after the first two stages of review, where a majority of CFS cases are won.

List of LTD lawyers now available online
A new Web site can help people with CFIDS and/or fibromyalgia locate an attorney in their area who specializes in long term disability issues. The site, http://www.erisa.md/ERISAESQ.pdf, offers a state-by-state listing of lawyers. For more information on the Employee Retirement Income Security Act (ERISA) and other disability insurance issues, please see the story on page 7.

CFIDS manual goes public
A comprehensive new manual on CFIDS is now available to the public through the Web site of the New Jersey Chronic Fatigue Syndrome Association (NJCFSA).

The 81-page document, “A Consensus Manual for the Primary Care and Treatment of Chronic Fatigue Syndrome,” covers topics ranging from sleep and pain in people with CFIDS to tips for doctors who want to help their patients win disability cases. The manual is pub-lished by The Academy of Medicine of New Jersey and The New Jersey Department of Health and Senior Services. The NJCFSA played a pivotal role in securing funding for the project through the state legislature.

To view the manual, go to http://njcfsa.org.