CFIDS News

Philadelphia symposium highlights latest  research and treatment issues 
Temple University researcher Robert Suhadolnik, PhD, and North Carolina CFIDS specialist Paul Cheney, MD, highlighted a patient symposium hosted by The Greater Philadelphia CFIDS Alliance in November 1998.
 
Dr. Suhadolnik described research into his hypothesis that the characteristic signs and symptoms of CFIDS are associated with the dysregulation of the 2-5A synthetase/RNase L pathway. This pathway provides a defense against viral infection and regulates cell growth and differentiation. In layman's terms, Dr. Suhadolnik explained, his research shows that many CFIDS patients have an abnormal enzyme that makes their anti-viral pathway malfunction. The effect is that, when they have a viral illness, their bodies cannot respond like normally healthy individuals due to this underlying enzyme defect.
 
This enzyme defect is only a research marker now, and Dr. Suhadolnik cautioned it will be no small hurdle to develop a clinical marker from this research.
 
Dr. Cheney, of the Bald Head Island Clinic in North Carolina, presented a range of new research findings as they relate to treatment of patients. Because the laboratory signs differ from patient to patient, from blood flow abnormalities to cellular energy generation, treatment is highly individualized.
 
One area of particular interest to him is the body's hormonal response to physical stress. Using a stationary bicycle, he measured the hydrocortisone production of patients in response to exercise. Healthy people normally double their hydrocortisone levels following a workout, but CFIDS patients have a lower response, with the more disabled patients responding the least.  Dr. Cheney hypothesized that the primary reason CFIDS patients often cannot work is their insufficient hormonal response to stress when they push themselves physically, cognitively or emotionally. The result is a kind of pus-crash phenomena, which can be minimized with modifications in lifestyle and behavior.

On videotape  The extensive presentations of experts Drs. Suhadolnik and Cheney, including their slide presentations, and the complete "Ask the Doctors" panel discussion are included on one 160-minute VHS tape. To order a copy, send a check for $16 payable to GPCA to 4 E. Manoa Road, Havertown, PA 19083. GPCA is an all-volunteer, non-profit organization. Proceeds from sales will be applied towards videotape expenses and future symposia.

Three local CFIDS specialists joined Drs. Suhadolnik and Cheney in answering questions from the audience during an "Ask the Doctor" panel. Dr. Joseph Bellesorte, Dr. James Day and Dr. Stephen Halbert participated, discussing such issues as Ampligen, differences between CFIDS and fibromyalgia, possible treatments and theoretical mechanisms for cognitive dysfunction, nutritional supplementation, and NMH and low blood volume findings. Other speakers discussed disability insurance, psychosocial issues, and physical therapy options.
 
(This report is condensed from a summary of the presentations prepared by GPCA member Tom Trissel.)

Aussie conference has international flavor 
A three-day conference in February 1999 in Sydney, Australia, brought together dozens of researchers and clinicians from around the world. David Bell, MD, from New York, was the keynote speaker, captivating his audience with case histories of five severe cases of CFIDS. Presentations represented medical specialties of bacteriology, virology, cardiology, hemodynamics, immunology, genetics and biochemistry. Psychiatry was notably absent.
 
Jill Booth, editor of Meeting Place, the newsletter of the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES), identified four key themes emerging from the conference:

• An "appalling" lack of response from both doctors and governments to this illness.
• The severity of the illness has been underplayed.
• The current illness criteria set by the United States Centers for Disease Control and Prevention are problematic and appear to "collect a range of illnesses."
• As a result, research is wide-ranging and treatments are varied, apparently dependent on cause of illness.

More than 200 doctors attended the conference, and more than 400 people attended a separate lecture day for patients. Booth described media coverage as "extensive." Professor Tim Roberts of The University of Newcastle was the conference moderator and shared organizing responsibilities with Christine Hunter of the Alison Hunter Memorial Foundation. Videotapes are expected to be made available.

Details on the web  Find detailed, lengthy summaries of conference presentations and abstracts prepared by Meeting Place editor Jill Booth on the ANZMES web site. Go to (link no longer active) and follow the links.