presents wide range of research
Second World Congress on Chronic Fatigue Syndrome (CFS) and Related Disorders was held September 9-12
in Brussels, Belgium. The meeting was organized by Dr. Kenny DeMeirleir, who has done considerable research
on chronic fatigue and immune dysfunction syndrome (CFIDS), most notably on the RNase-L antiviral pathway
and the drug Ampligen.
Fifty-five different presentations were made over the four days and
the proceedings will be published in the peer-reviewed Journal of Chronic Fatigue Syndrome, distributed
by Haworth Press. Following are summaries of just a few of the research presentations made at this meeting.
Research on the RNase-L antiviral
to be fruitful, according to reports by Bernard Lebleu, PhD, Robert Suhadolnik, PhD, and Kenny DeMeirleir,
MD, PhD, on studies partially funded by The CFIDS Association of America. Both research teams-Dr. Suhadolnik
in Philadelphia and Dr. Lebleu in France-have found a new 37 kilodalton (kDa) form of RNase-L in CFIDS
patients. RNase-L, which normally weighs 80 kDa, fights infection by degrading viral DNA. The low molecular
weight form of RNase-L found in CFIDS patients may reflect dysfunction in the antiviral pathway or immune
Dr. Lebleu reported on a study that will be published in the December issue of American
Journal of Medicine. The ratio of 37 kDa RNase-L to 80 kDa RNase-L was computed for 57 CFIDS patients,
11 fibromyalgia patients, 14 depressed patients and 28 healthy controls. He found that having a ratio
above 0.5 distinguished CFIDS patients from the control groups. Nearly all the CFIDS patients-50 of 57-had
the 37 kDa form of RNase-L and 41 of 57 had a ratio above 0.5. None of the depressed or fibromyalgia (without
CFIDS) patients had ratios that high. Two of 28 healthy controls had a ratio above 0.5, but both of them
had regular contact with CFIDS patients, lending credence to the theory that at least some cases of CFIDS
may be caused or triggered by a pathogen that is transmittable.
Drs. Lebleu and Suhadolnik use
different probes in their RNase-L assays, but the two methods are comparable, reported Dr. Suhadolnik.
Both doctors tested the same 90 CFIDS patients from Dr. Daniel Peterson's clinic in Nevada and controls
from a local college. Dr. Suhadolnik correctly identified 93% and Dr. Lebleu correctly identified 100%
of the CFIDS patients using their independent RNase-L assays. The test can assist in the identification
of CFIDS patients but it cannot yet be considered a diagnostic marker, Dr. Suhadolnik emphasized, because
people with other illnesses may have a ratio above 0.5 as well.
Dr. DeMeirleir talked about the
clinical significance of the 37 kDa RNase-L finding. He does not think that everyone who meets the Centers
for Disease Control and Prevention (CDC) 1994 criteria for CFIDS will have this marker, but that there
will be a subgroup who have it. According to DeMeirleir, those in this subgroup most commonly meet the
1988 CDC criteria for CFS, have bronchial hyper-reactivity and respond well to the experimental drug Ampligen.
McGregor, MD, reported that elevated RNase-L, which was found in 75% of CFIDS patients and 14% of controls,
correlated with elevated levels of interleukin-6 and with the symptoms of headache, fatigue, muscle pain
and concentration problems, while elevated levels of interleukin-2 were more often found in patients with
mood disorders. Interleukins are chemicals in the body that permit the cells of the immune system to communicate
and coordinate the immune response, so these findings indicate that depression in CFIDS may have an immunological
from the University of Newcastle, Australia, were quite visible at this conference. They have made significant
strides in their efforts to stratify CFIDS and chronic pain patients based on biochemical markers (see
the RNase-L section on previous page). The group is working to sub-categorize patients based on biochemical
findings so that individual management plans can be devised.
Myofascial pain seems to be a secondary or "opportunistic"
that occurs in conjunction with CFIDS and may be caused by a toxin-producing, cell membrane-damaging staphylococcal
infection, said Newcastle researcher H.L. Butt, PhD.
DeMeirleir reported on the benefits of Ampligen, noting that 24 weeks of taking the drug produces positive
results for several years. Two to four years after treatment, Dr. DeMeirleir's CFIDS patients who took
Ampligen had better exercise capacity, memory and cognitive ability compared to those who did not.
Strayer, MD, of Hemispherx Biopharma (which owns Ampligen), presented data on health care utilization
related to Ampligen. The company's research found that Ampligen patients had fewer emergency room visits
and hospitalizations compared to patients who were given a placebo. The Ampligen patients had 70% fewer
emergency room or hospital admissions (seven vs. 23) and 83% fewer days in the hospital (19 vs. 114) compared
to the placebo group.
Resetting the immune system may be an effective treatment for CFIDS, reported
Nancy Klimas, MD. In a study that was partially funded by The CFIDS Association, lymph node cells were
surgically removed from 11 patients, cultured for 12 days and surgically replaced. Nine patients responded
positively to the treatment with improved cognitive function, quality of life and lowered immune activation.
This treatment seems to be effective against many different viruses, said Dr. Klimas; determining the
virus(es) involved in CFIDS is next on her agenda.
The primary reason CFIDS patients have difficulty remembering things is because they
have neurological impairments that hinder both learning and retrieving memories from storage, reported
John Deluca, PhD, of Kessler Hospital in New Jersey.
In a recent study he conducted, 51 CFIDS
patients required more time and study to commit facts to memory than healthy individuals. Once they had
memorized those facts, their ability to recall them was also impaired. Deluca confirmed that the implications
of this finding for students with CFIDS could be dramatic.
Katherine Rowe, MD, presented her research proving CFIDS definitely exists in adolescents
and is not a form of somatization disorder, a condition of recurring unexplained symptoms with no physical
Using a statistical test, she found five symptom categories that, combined, seemed to be
reflective of CFIDS in adolescents: muscle pain and fatigue, neurocognitive, abdominal, head and chest
pain, neurophysiological, and immunological. She also found that the immunological dimension seemed to
be the most significant factor, as it had both direct and indirect effects on the other four symptom factors.
CFS patients have an impairment
capacity that is not due to deconditioning, said Pascal DeBecker, PhD. The degree of impairment was moderate
in women and mild in men. Dr. DeBecker hypothesized that reduced exercise capacity may be caused by autonomic
dysfunction, which results in a lowered resistance to physical stress and/or metabolic disturbances.
Gulf war illness (GWI)
Benjamin Natelson, MD,
who runs federally-funded
CFS and GWI research centers, compared GWI patients with and without post-traumatic stress disorder (PTSD)
and healthy controls. He was surprised to find that the GWI patients with PTSD had a subnormal cardiovascular
response to laboratory stressors. Typically, PTSD patients have a normal response to lab stressors and
over-respond to trauma-related stressors. Dr. Natelson hypothesized that exposure to toxins or other pathogens
during the Gulf war may have altered these veterans' stress response.
Paul Levine, MD, reported
on a cluster analysis of GWI patients that showed the combination of four neurologic symptoms-blurred
vision, balance/dizziness, tremors/shaking and speech difficulty-were significantly more common in Gulf
War veterans than in non-Gulf veterans. Among the Gulf veterans, 2.4% had all four symptoms and 7.8% had
three symptoms, while in non-Gulf veterans only 0.46% had all four symptoms. People with all four symptoms
also had higher rates of blackouts/seizures (22% vs. 0.4%) and pain/inflammation of nerves (32.1% vs.
1.7%). He said this "supports the possibility that environmental factors could be responsible" for the
Garth Nicolson discussed mycoplasma infections in GWI patients. As reported in the September/October
issue of The CFIDS Chronicle, Dr. Nicolson has found that 45% of GW veterans and 65% of CFIDS
and fibromyalgia patients have mycoplasma infections, which can be treated with antibiotics although they
are difficult to cure.
final day of the conference was devoted to CFIDS patient issues. I moderated a discussion on the proposed
name change for chronic fatigue syndrome (CFS). Attendees from the newly formed European alliance of ME/CFS
organizations strongly objected to the name chronic fatigue syndrome, but were even more opposed to renaming
the illness defined by the U.S. CDC critera as myalgic encephalopathy/encephalomyelitis (ME), as ME defines
only a subset of the CFS population.
Members of the alliance argued that CFS is a more heterogeneous
population than ME, and one that allows people with psychological conditions to be diagnosed with CFS.
The Europeans indicated that the only way they would accept U.S. adoption of the name ME would be if the
ME definition were used along with it, in place of the CDC's criteria.
During the final day
Simon R. Molesworth, a member of the Queen's Council (composed of the top attorneys in Australia) and
the parent of a young son with CFIDS, gave a rousing speech in favor of civil rights protections for CFIDS
patients and their caregivers.
Molesworth, along with the Allison Hunter Memorial Foundation based
in Australia, then proposed the formation of an International Council of CFS/ME Associations. The charter
of this organization is:
- To provide an international voice to represent the needs of people
with CFS/ME and their caregivers in all parts of the world including, in particular, representation to
international and national organizations.
- To be a public advocate to achieve justice for people with CFS/ME
and their caregivers (including providers of supportive professional services) in accordance with principles
of human rights consistent with the United Nations Universal Declaration of Human Rights.
- To achieve responsible support from national governments for the
needs of people with CFS/ME and their caregivers.
- To promote and support responsible medical research and treatment
to overcome CFS/ME as a serious international health issue.
- To be a public advocate for individuals with CFS/ME when their own
human rights are in jeopardy by actively supporting them.
- To promote public education as a means of achieving a better understanding
of CFS/ME as an illness and the needs of all those associated with it.
CFIDS advocates at the Brussels conference
were very supportive of
the charter. The international council is still in the very early planning stages, but the Chronicle
will report on its proposed activities and membership when more details become available.
Vicki Walker, Research and Public
Policy Project Manager, is
in her sixth year of service with The CFIDS Association of America. This is the eighth CFIDS conference
she has covered for The CFIDS Chronicle since 1993, but the first time she has ever traveled overseas.
For more information
Interested in reading more about what went on in Brussels, but donít want
to wait for the proccedings to be published in the Journal of Chronic Fatigue Syndrome
? Roger Burns, a PWC and publisher of CFS News on the Internet, has featured
the conference in the October issue of his newsletter. Coverage includes an initial report
with impressions from researchers who attended and a comparison of ME and CFS that is pertinent to the
name change discussion (see "Patient meeting" section on this page).