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Spring 2002

Research News
The latest information on research, treatment and diagnosis of CFS and related disorders

Survey links CFIDS, endometriosis
A new survey has found that women with endometriosis are more likely to have chronic fatigue and immune dysfunction syndrome (CFIDS ) than the general female population in the United States .

The results, presented in February by the National Institutes of Health, were based on a 1998 survey by the Endometriosis Association. The group polled 3,680 women who had surgically diagnosed endometriosis, a painful disease in which tissue that normally grows in the uterus begins to grow elsewhere in the body.

As part of the survey, the association asked participants whether they suffered from other medical conditions, including CFIDS and fibromyalgia. Thirty-one percent of the respondents said they had one or both of the conditions, compared to less than 10 percent of the overall population.

Researchers have long suspected a connection between endometriosis and CFIDS, but this survey is the first comprehensive piece of data to confirm the link. Researchers don’t know why the two conditions co-exist — but they speculate that CFIDS may arise from the pain caused by endometriosis.

PWCs show reduced peak oxygen use
People with CFIDS (PWCs) cannot use as much oxygen during exercise — and may have less total blood volume — than healthy test subjects, according to new research from Harvard Medical School. These two factors could combine to create or worsen the intolerance to exercise that is a hallmark of the disease.

The researchers compared the performance of 17 PWCs (average age: 39) with those of 17 healthy controls (average age: 36) on an exercise test that involved pedaling a stationary bicycle to exhaustion. Results showed that the PWCs were able to use about 35 percent less oxygen at the peak of their exercise test than the control subjects.

In addition, the PWCs showed total blood volumes that were about nine percent less than the control subjects, although these results were not strong enough to reach statistical significance. Having less blood in their bodies, and less oxygen in their blood, can combine to make PWCs less able to exercise without worsening fatigue, the authors note.

The authors also say that PWCs may be caught in a “potential vicious cycle” where their lower exercise levels cause even greater fatigue and deconditioning. The study was published in the American Journal of Physiology: Heart and Circulatory Physiology (Vol. 282).

CFIDS manual debuts
New Jersey has become the first state in the nation to publish a comprehensive guide to the treatment of people with CFIDS. The publication, A Consensus Manual for the Primary Care and Treatment of Chronic Fatigue Syndrome (CFS), will be mailed to more than 14,000 physicians across the state — and will be made available to others across the country in print and electronic form.

The manual was created at the urging of the New Jersey Chronic Fatigue Syndrome Association (NJCFSA). The association and support groups across the state worked for more than four years to convince legislators and public health officials to fund the 73-page manual, which cost more than $95,000 to produce and mail.

“There’s nothing out there like it,” says Jon Sterling, former head of the NJCFSA and now chairman of the Board of Directors of The CFIDS Association of America. “We wanted to create something that would help physicians diagnose and treat patients, and that’s what we’ve done.”

The manual contains 13 chapters, covering a broad range of CFIDS-related topics. Among the chapters are:

  • Pathophysiology in CFS;
  • Initiating Care of Patients with CFS;
  • Infections in CFS;
  • Cognitive Dysfunction in CFS; and
  • Pain in CFS.

The manual is published by The Academy of Medicine of New Jersey and The New Jersey Department of Health and Senior Services. The University of Medicine and Dentistry of New Jersey is also credited on the manual. It is edited by Joseph F. John Jr., MD. James M. Oleske, MD, MPH, is associate editor.

Sterling said the manual creates a standard of care for doctors who treat people with CFIDS. In addition to giving doctors guidelines for treatment, the manual also will help patients and physicians convince insurance companies to cover a variety of treatments that they might otherwise refuse to pay for.

The manual is scheduled to be released online soon on the Web site of the state department of health, http://www.state.nj.us/health/fhs/famhlth.htm . The manual also will be distributed by The Academy of Medicine of New Jersey . For more information, call the academy at 609-896-1901.


Editor’s note: The cover story of this edition of The CFIDS Chronicle, “The role of infection in CFIDS,” was adapted from the New Jersey manual. An excerpt from a chapter on interviewing patients with CFIDS also appears in this issue of The CFS Research Review, on p. 8.
Correction
An article in the winter 2002 issue of The CFIDS Chronicle contained an error. The story on p. 13 should have stated that natural killer cell activity often decreases in the immune systems of people with CFIDS .