March - April
Philadelphia symposium highlights latest research
and treatment issues
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.
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.
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 |
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
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.
report is condensed from
a summary of the presentations prepared by GPCA member Tom Trissel.)
Aussie conference has international
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.
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
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
abstracts prepared by Meeting Place editor Jill Booth on the ANZMES web
site. Go to (link no longer active) and follow the links.