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1996 AACFS Conference Presents New Findings

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By By: Katie Ferren • • October 30, 1996

SAN FRANCISCO,CA—Researchers presented promising new findings at the American Association for Chronic Fatigue Syndrome (AACFS) research and clinical conferences held on October 13-16.

The research topics varied from discussions of the prevalence of chronic fatigue to interdisciplinary studies regarding multiple chemical sensitivity. The clinical forums ranged from perspectives on long term disability to management and treatment of CFIDS among doctors.

More Research Required for Potential CFIDS Marker

A preliminary study led by Dr. Robert Suhadolnik, of Temple University reports that a small sampling of CFIDS patients’ RNA taken from Dr. Daniel Peterson and Dr. Paul Cheney’s Lake Tahoe outbreak patients shows a biochemical dysregulation in 2-5A synthetase antiviral pathway. The abnormality was present in all of the CFIDS patients, and was absent from the 10 healthy controls. The normal RNAseL level is around 50, whereas most of the PWCs had levels at or above 500. Suhadolnik is quick to point out that these are still preliminary findings and much larger, clinical controlled studies are needed.

CDC Study Indicates High Prevalence of Chronic Fatigue

Two percent of an urban population self-reported a condition of severe fatigue persisting for at least six months, indicating a high prevalence of fatigue. The random San Francisco phone survey was led by Dr. Lea Steele for the Center for Disease Control (CDC) showed that 635 out of 16,970 persons verified that they were currently experiencing "severe fatigue, extreme tiredness, or exhaustion" for at least 6 months, with approximately half (297) reporting no medical or psychiatric diagnosis to explain fatigue. Thirty-three adults (0.2% of the population) were classified as CFS-like cases, and 259 (1.8%) were classified as idiopathic chronic fatigue. CFS-like illness occurred in persons of all races, but is less prevalent according to this study among Asians and significantly higher among Black and Native American ethnic groups.

Gynecologic Risks and CFIDS?

Findings by Dr. Bernard Harlow and presented by Dr. Anthony Komaroff (who participated in collecting the data for the study) indicate the estimated risk of CFS was greater in women with gynecologic abnormalities such as galactorrhea, polycystic varies, endometriosis, uterine fibroids, and ovarian cysts. The study was conducted at the Brigham Young and Women’s Hospital on 150 women who met the CDC definition of CFS and was limited to self report compared to physical examination.

Report Shows Hydrocortisone Is An Ineffective Treatment

Dr. Stephen Straus of the National Institutes of Health (NIH) claims that low doses of the steroid hydrocortisone are not an effective treatment for those with CFIDS. It was originally thought that because patients frequently have low cortisone levels they might benefit from additional cortisol supplementation. Testing revealed, however, that small doses of cortisone suppressed the adrenal glands. Strauss concluded that there was no significant improvement in comparison to the control group, which was given a placebo.

Cytokine Studies

Dr. Nancy Klimas presented studies that showed PWCs experience a minor increase in Type 2 cytokines such as IL10 and ILK. These increases will probably not be used as markers because of the expensive techniques involved in gathering data, but continue to add proof that CFIDS is an organic illness with immune system manifestations..

Cognitive Behavior Therapy

Dr. Michael Sharpe presented a controlled study of PWCs, half of which were given Cognitive Behavior Therapy, the other half receiving standard medical care. Sixty percent of the group with therapy had improved after one year, while the control group showed little improvement. According to Sharpe, a mental reframing of the illness and a positive attitude may improve, but not cure, a person with CFS.

Clinical Conference

The clinical conference was geared toward issues which concern patients with CFS as well as their doctors.

One topic of interest was an update on Dr. Peter Rowe’s studies on Neurally Mediated Hypotension. Rowe dispelled some myths during his presentation, such as the mass media’s suggestion that "simple table salt" may cure CFS. He explained that treatment with Florinef and other medications is a complicated process which involves much interaction between doctor and patient.

Dr. Keiji Fukuda of the CDC gave a talk on Gulf War Syndrome, which has recently been linked to CFS as a result of similar symptoms such as fatigue, sore joints, and lack of concentration. Fukuda described the process by which the CDC isolated the cases of Gulf War Syndrome to characterize it as a real disease.

Psychological discussions and panels throughout the conference appeared to be controversial, as some PWC’s enjoyed the presentations, while others expressed frustration with the perception that CFIDS could be treated with psychological counseling. Techniques discussed included cognitive-behavior therapy, supportive-expressive therapy, and insight-oriented therapy.

One of the most attended sessions was on the topic of disability, in which disability analysts attempted to justify the difficulty in granting disability claims to PWCs. On the other side, attorney Gerald Engelskirchen discussed the advantages and disadvantages of various types of disability claims, as well as offering suggestions on approaching LTD claims.

Finally, reporters discussed the role of the media in covering stories on medical breakthroughs. A spirited discussion pursued on the treatment of CFIDS by the media.

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