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Winter 2003  

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

Insurer accused of cutting benefits

Unum Provident, the nation’s largest long-term disability (LTD) insurer, has been accused of wrongly terminating or denying benefits in an attempt to cut costs.

The company’s former medical director has filed suit against Unum Provident, claiming that the firm’s “primary purpose and policy” was to deny disability claims. Dr. Patrick Fergal McSharry said outside doctors, called medical advisors, were encouraged to use language in their patient reports that would support claim denials.

Unum Provident has denied the allegations. The case will be heard in a federal court; a trial date has not been set.

The case gained further notoriety in October, when the television program “Dateline NBC” aired a segment about the lawsuit and Unum Provident practices. Meanwhile, a Maine attorney has filed a class-action suit against the company, on behalf of people who feel their LTD claims were unfairly denied or terminated.

For more information on the suit, contact attorney Jon Holder at 207-774-2899, or by e-mail at jholder@maine.rr.com.

Ampligen study enrolled

Hemispherx Biopharma, Inc., maker of the experimental drug Ampligen, has fully enrolled its ongoing Phase III clinical study on Ampligen as a treatment for CFIDS.

The tests are being conducted on 230 patients at 13 sites across America . The study is double-blinded and placebo-controlled, which means that neither the researchers nor the patients will know who is receiving Ampligen and who is receiving an inert, fake substance. The trial is scheduled to last 64 weeks; results are to be announced in 2004.

Phase III trials are usually the final step in testing before manufacturers apply to the federal Food and Drug Administration for approval to market the drug.

Name change group to present recommendations

The Name Change Working Group, established 2 1/2 years ago by the U.S. Department of Health and Human Services (DHHS), has met monthly to share information and review and revise recommendations related to a name change for CFS. The Working Group has drafted a proposal that will be shared with the DHHS CFS Advisory Committee, once formed (see DC Dispatch, p. 12).

Presently, the name Neuroendocrineimmune Dysfunction Syndrome is being considered as an alternate term for CFS, and to describe a condition somewhat broader than the research definition for CFS published in 1994. In addition to the name itself, the Working Group is also discussing the elements of a successful campaign to secure widespread adoption and use of a new name.

The group will share its draft recommendations during a session held at the American Association for Chronic Fatigue Syndrome’s February 2003 conference.

New CFIDS definition written by Canadian panel

A Canadian government panel has created a clinical case definition for CFS (also known as Myalgic Encephalomyelitis, or ME) that authors hope will be used by doctors to better diagnose and treat the disease. The document, created by the 11-doctor Canadian Expert Consensus Panel, will be published in early 2003 in the Journal of Chronic Fatigue Syndrome.

Currently, most doctors use the 1994 CFS case definition devised by the U.S. Centers for Disease Control (CDC). This definition was written to help standardize research into CFS but was not intended for use by primary care physicians; doctors on the Canadian panel say they hope their new guidelines will give these practitioners guidance in dealing with the disease.

Leonard Jason, PhD, a CFIDS researcher from DePaul University , has examined the Canadian document. He calls it an “important new definition,” and says that it may help doctors and researchers identify a more homogenous patient group. The 1994 case definition has been frequently criticized for identifying groups of patients with widely different symptoms, disease progressions and medical histories.