January - February
Diagnosis and Treatment
Fatigue is associated with nearly every
medical and psychiatric disease,
and the doctor's job is to sort it out, David Klonoff told the AACFS Clinical Conference. He stressed
the importance of taking time to rule out other diseases before making a diagnosis of CFS, since failing
to do so can allow a life-threatening illness to grow worse.
James Jones said diagnosis must begin
with onset of symptoms, including
the time of year, what activities the patient was involved in, geographic location, etc. Klonoff noted
the history may suggest another test, such as for Lyme, if the patient were in a location where he or
she could have been exposed to that disease.
If the patient's current symptoms include
those that were present
at onset, doctors should consider the possibility of a persistent infection and test for such things as
parvovirus, toxoplasmosis and chronic streptococcal infection, Dr. Jones said. If there was no specific
illness at onset, look more carefully for evidence of an inflammation, possibly in response to an infection.
Standard lab tests
Klonoff suggested a standard
series of laboratory tests should include a blood chemistry panel, a complete blood count, sedimentation
rate, thyroid stimulating hormone and a urinary analysis. Those tests are both useful in diagnosis and
cost-effective. Dr. Jones said a tilt-table test is warranted only if the patient has specific symptoms,
such as nausea or dizziness, that suggest an autonomic nervous system problem. Other tests that he said
would not be helpful in the routine evaluation of CFS patients are tests of immune function, MRI, SPECT
scans and brain mapping. Such tests, many of which were being promoted in the lobby of the conference,
are useful for research only, he said. Kenny De Meirleir said he does do tests of immune function if there
are signs of cytokine activation, and he tests RNase L function where there is indication of a persistent
complaints should be checked
out and treated accordingly. Dr. De Meirleir, noting that most of his patients come from general practitioners
who already have done a basic work-up, said he does a pulmonary function test and checks for bronchial
hyperactivity, which he sees frequently in CFS patients. A chest X-ray is done to exclude other disease.
Because ability to work is often a question in patients referred to him, he also does a bicycle ergonometer
test monitoring heart function and blood pressure to determine the patient's functional capacity.
A rare patient will have a degenerative
muscle disease, which might
be signaled by muscle weakness defined by trouble starting or maintaining a specific physical activity.
And sleep problems may require careful evaluation by a specialist, a critical step that is too often not
done, Jones said.
Deal with stress
said the effects of stress also
need to be considered in the diagnostic interview. Doctors should ask patients about external stressors-relationship
problems, job conflicts and time and money pressures-and internal stressors-dissatisfaction with lifestyle,
contradicting desires, inappropriate messages from childhood. Then doctors should help the patient do
something to relieve those stressors. External stressors respond well to a support group; internal stressors
do well with psychotherapy.
He urged doctors to be optimistic with
their patients throughout
the diagnostic process, to aim for gradual improvement and to recognize the mind-body connection.
Treatment still uncertain
on treatment strategies
reflected many of the research developments, but they also revealed the uncertainty with which doctors
approach CFIDS treatment. For instance, David Bell talked about his preliminary research findings of low
circulating blood volume, but he wondered if that condition is simply another manifestation of the illness
or if it directly causes symptoms. Saline infusions seem to provide short-term improvement, possibly simply
by increasing blood volume.
Nelson Gantz said emotional support
and continuing to rule out other
illnesses are essential aspects of treatment. He encouraged his colleagues to avoid exotic, untested remedies.
He noted that nutritional supplements now represent an $8 billion per year industry in the United States
(twice that of antibiotics), but there is little information and little regulation to support their use.
"These products may have value, but they need to be studied," he said.
Paul Cheney described his pyramid approach
to treatment that includes
magnesium and Klonopin ("to protect the brain until we know what's going on"), vitamin B-12 injections
(beginning with 5,000 micrograms at night), treatments to remove toxins from the liver and removal of
toxin-laden root canal teeth.
One symptom at a time
Peterson said his approach
is to address symptoms one at a time, attempting to measure the effect of each treatment and avoid the
pitfalls of side effects. He said his patients have had good success working with a physical therapist.
He said it takes time to deal with the variety of issues patients have, including non-medical issues that
nevertheless are important to their treatment. Noting that familiarity breeds contempt, or at least complacency,
Peterson said doctors must always ask the patient what is different and be alert for the development of
other diseases, such as cancer.
Psychiatrist Michael Sharpe spoke in
support of cognitive behavior
therapy, which he described as the patient and therapist working together to change unhelpful beliefs
and behaviors. He said CBT does not imply that the illness is psychiatric, rather that "what the patient
thinks about his illness interacts with physiology." It focuses the patient on the present, encourages
self help, and seeks a gradual change in activity. Sharpe said his research indicated the maximum benefit
came after about 12 months of treatment, but in following patients in one study after 4« years, differences
between CBT subjects and controls were getting smaller.
Dr. Lapp's "Top 10" list
Lapp began his "Top 10"
list of treatments with Klonopin for sleep, which he described as the primary thing that needs to be treated.
Klonopin begins to work quickly, the effects are long lasting, and it seems to reduce anxiety and the
restless leg syndrome that many patients experience. He continued the list with:
- Vitamin B-12 injections to help with metabolism of amino acids.
Lapp said he begins with 3,000 micrograms three times a week, up to a maximum of 10,000 micrograms per
week to avoid excitability and acne problems.
- Low doses of amphetamines seem to speed up brain processing to normal
and address symptoms of attention deficit. They seem to be especially helpful for patients who are extremely
sleepy, but they should not be used in patients with high blood pressure.
- Dietary salt and water or fludrocortisone for neurally mediated
hypotension. Many patients may respond quickly, but most will require several months of steady therapy
to see results.
- Antidepressants such as Prozac, Zoloft and Wellbutrin are frequently
used in low doses, not for depression but because they tend to energize patients and may help with sleep
- Diamox reduces intracranial pressure and helps relieve many headaches.
Low doses, as needed.
- Neurontin (gabapentin), a drug used in epilepsy, appears to calm
the central nervous system and may increase clarity of thinking, but it seems particularly effective on
toothache-like or deep bone pain. Start with a dose of 100 mg at night and increase to three times a day
- Hormone replacement (estrogen in women, testosterone in men) may
relieve a variety of symptoms, support bone and muscle growth, address loss of libido and elevate mood.
- Treatment for allergies with non-sedating antihistamines such as
Claritin and Allegra, nasal steroids and immuno therapies.
- Ampligen, which Lapp described as his "all-time favorite," since
most patients improve on it. (Dr. Peterson said he believes Ampligen is effective only for a very restricted
population with very specific profiles.)
On the light side
one of the conference’s lighter moments, Nelson Gantz said treatment studies may offer impressive but
unreliable results for any number of reasons. For instance, results of an 1869 study of electric shock
therapy for neuromyasthenia showed that 67% of patients were cured after just one treatment. "Maybe,"
Dr. Gantz said, "they just didn’t want a second treatment."
Excessive rest rejected
There was general agreement among physicians on the treatment
panels against excessive
the exception of the first days or weeks of illness. Instead, they recommended staying as active as possible
while avoiding a relapse. Here is how several doctors responded to a question about rest therapy:
Dr. Cheney: "It does no good to shrink [activity] limits artificially."
Lapp: "Excessive rest only makes muscle tenderness and joint stiffness worse."
"[The body] is not like a battery that needs to be recharged."