RETURN TO TABLE OF
AACFS Conference Highlights
New research and treatment options for
chronic fatigue syndrome (CFS) were the focus at The American Association for
Chronic Fatigue Syndrome’s biannual scientific conference held February inChantilly,
The event featured presentations on breaking CFS research
results and, for the first time, a day-long session on treatment strategies for
clinicians with CFS patients. More than 190 researchers, doctors and other
healthcare professionals from around the world attended the meeting.
Below is a summary of some of the key presentations given
during the conference.
Recent sleep research indicates
that CFS patients experience true fatigue and not simply feelings of sleepiness.
Elizabeth R. Unger, PhD, MD, of the U.S. Centers for Disease Control and
Prevention (CDC), reported that 62.5 percent of study subjects with CFS showed
non-restorative sleep, with 66.7 percent exhibiting restlessness during sleep
and 33.3 percent showing insomnia. These figures compared to 2.4 percent, 9.8
percent and 0 percent of non-CFS controls who showed no signs of fatigue.
A study from the
and Dentistry of New Jersey
found that pain was a greater limiting factor than fatigue in CFS patients who
report chronic impairment in their ability to perform routine domestic and
Suzanne Vernon, PhD, a CDC research
presented an overview of gene expression profiling. They reported that it is now
possible to take blood or other tissue and apply it to a small glass slide
containing more than 20,000 gene identifiers. When the samples are processed and
scanned, scientists can determine which genes are turned on, off or somewhere in
between. The vast array of information is specific for various states of health
and disease in each individual. For example, gene profiling can now distinguish
between several types of lymphoma in a patient, thereby allowing more specific
treatment for the patient.
Using 25 cases of CFS supplied by the CDC,
could accurately distinguish
CFS from healthy controls, and seven specific genes were identified as “turned
on” in the disorder. Behan, meanwhile, studied muscle biopsies of three patients
with CFS and found three genes upregulated and 33 genes downregulated.
Twenty-four genes were positive in controls but absent in CFS.
Patrick Gaffney, MD, of the
also studied gene profiling
and found 166 genes “different” in CFS when compared to normal controls. The
implication is that gene profiling might some day provide a diagnostic test, as
well as a means to distinguish infectious, immunological or other causes of CFS.
Infection and Immunology
Kevin Maher, PhD, of
the University of Miami Medical School, described the molecular basis of
immunological defects found in CFS, including activated T cells, elevated
cytokines and immunoglobulins, reduced NK cell activity, and poor delayed skin
hypersensitivity. His studies concluded that perforin and granzymes (used by
T-cells for killing other sick or infected cells), were depressed in the T cells
of people with CFS. Also, activation of T cells is correlated with increased
Interleukin 4 and decreased Interleukin 6, as typically seen in CFS
Immunity in some CFS patients may be disturbed by repeated or
persistent bacterial infection, according to Olof Zachrisson, MD, PhD, of
treated 51 CFS patients with a staphyloccal (bacterial) vaccine for 12 weeks,
and obtained a positive response in 16 patients. There were modest decreases in
pain and fatigue that correlated with antibody production in the individuals.
However, the response was not maintained unless the vaccine was continued
monthly. The vaccine is produced privately in
is neither publicly nor commercially available.
Central Nervous System
Richard H. Gracely, PhD,
, presented two papers on
functional MRI (fMRI), which rapidly measures cranial blood flow in response to
physical challenges such as pain. His group applied thumb pain either
intermittently or constantly, and obtained fMRI scans of the fibromyalgia (FM)
subjects every five seconds. This demonstrated that with intermittent pain the
FM patients had decreased blood flow in the cingulated, secondary somatosensory
cortex, cerebellum, and insula; only patients with FM showed activation
(increased flow) in the thalamus and putamen.
With constant thumb pain, FM subjects showed increased cranial
blood flow in the mid-frontal gyrus and inferior frontal gyrus (Broca’s speech
area); only FM subjects showed activation in the caudate and lentiform areas.
Only control subjects, on the other hand, had activation when the pain stimulus
was released. These studies confirm that people with FM respond differently to
painful stimuli than do normal controls.
Yoshi Yamamoto, PhD, from the
Educational Physiology Lab at the
, demonstrated that autonomic
symptoms can be improved modestly by distraction with extraneous noise or
electrical stimulation. That is, abnormal autonomic responses were blunted when
the subject was distracted. This fits clinically because many patients report
that their symptoms are not as noticeable when they are distracted by noise,
bright lights, activity, commotion or discomfort; however, it was not previously
clear if such stimuli simply distracted the subject or actually improved the
Daniel J. Clauw, MD, of the
reported that patients with
CFS and FM both show higher catecholamine levels — particularly norepinephrine —
than controls while performing a series of activities. These activities included
pain testing, cognitive challenges and sub-maximal exercise. Clauw noted that
the catecholamine responses were consistently different between the CFS and FM
groups during the testing, possibly a sign that the patients have slightly
different responses of the hypothalmic pituitary adrenal (HPA) axis.
This report was compiled by Charles M. Lapp, MD, an AACFS
board member and founder of the Hunter-Hopkins Center, P.A., in Charlotte, N.C.;
Giuliucci, editor of The CFS
Controlling CFS Pain: One Doctor’s Advice
During a presentation on pain management in patients with CFS,
Benjamin Natelson, MD, professor of neurosciences at the University of Medicine
and Dentistry of
offered pharmacological advice based on his clinical experience. Natelson said
he progresses through four stages of medication, choosing drugs appropriate to
each patient's presentation.
Nonsteroidal anti-inflammatory drugs (NSAIDs): Includes
ibuprofen at maximum doses or Celebrex (200 mg twice daily). “It’s a reasonable
thing to try,” Natelson said. “The problem with NSAIDs is that they usually
Tricyclic antidepressants (TCAs): Amitriptyline can be
effective, particularly in patients who have trouble sleeping. Use lower doses
than prescribed for depression.
Effexor (venlafaxine): Try this antidepressant when
mood disorder is also present. The long-lasting version is best; dosage may vary
from 75 mg to 225 mg once daily.
Stage Two — Anti-epileptics
Neurontin: “ Start low and go slow” with 100 mg at
bedtime for 4-5 days, increasing to 100 mg four times per day and working to 300
mg four times per day. A dose of 1,200 mg per day is the first threshold where
pain relief may be noticed. Can be increased to anywhere from 2,400 mg to three
If this is not effective, Neurontin can be combined with
Lamotrigine starting at 25 mg per day at bedtime, then increasing to 25 mg three
times per day, and then increasing again to 100 mg three times per day.
Trileptal: Start with 150 mg twice daily, and increase
to 600 mg twice daily.
Topamax: This can be useful in patients with weight
Dr. Natelson said he usually tries at least three anti-seizure
medications before moving to the next stage.
Plaquenil: Used as an anti-malarial agent during World
War II, this drug can raise pain thresholds. But it carries a number of
difficult side effects, and can take six months for patients to decide its
Tizanidine: Start with 2 mg per day, and progress to 2
mg twice per day and then 4 mg twice per day.
Mexelitine: Start with 150 mg per day, progressing to
200 mg and 300 mg per day. Can go as high as 10 mg per kilogram of body
Tramadol: In doses up to 50 mg four times daily.
Lidocaine: Patches may help with localized pain.
Stage Four — Opiates
Dr. Natelson advised staying away from short-acting opiates,
but said he does sometimes start with Darvon. He also will use Methadone, which
is inexpensive, and MS Contin (not OxyContin, which has “street concerns” due to
Dr. Natelson said that doctors should be careful with opiates,
but should not avoid prescribing them to patients with persistent, extreme pain.
“You can’t be frightened,” he said. “You will definitely improve that person’s
quality of life.”
He also stressed that more research is needed into pain relief
for patients with CFS. “We desperately need trials,” he said. “The drug
companies don’t understand our patients and their need for pain relief.”