In October 1998 the American Association for Chronic Fatigue Syndrome held an international conference. Speakers from around the world attended and a wide variety of issues were covered, including difficulties of having a disability, paediatric issues, comparisons of fibromyalgia and CFS/ME and diagnosis and treatment. Speaking on diagnosis and treatment were several prominent physicians including Dr Charles Lapp and Dr Paul Cheney. The CFIDS Chronicle, January/February 1999 presented a summary of this segment of the conference which I have included here:


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/ME, 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
Dr 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/ME patients are tests of immune function, MRI, SPECT scans and brain mapping. Such tests, many of which are 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 viral infection.

Testing further
Respiratory 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/ME patients. A chest X-ray is done to exclude other diseases. 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 signalled by muscle weakness defined by trouble starting or maintaining a specific 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
Klonoff 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 to 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 recognise the mind-body connection.

Treatment still uncertain
Presentations 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 US (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
Daniel 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 behavioural therapy, which he described as the patient and therapist working together to change unhelpful beliefs and behaviours. 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 on one study after four and a half years, differences between CBT subjects and controls were getting smaller.

Dr Lapp's "Top 10" list
Charles 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, 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 energise patients and may help with sleep abnormalities.
• 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 100mg at night and increase to three times a day as tolerated.
• Hormone replacement (oestrogen in women, testosterone in men) may relieve a variety of symptoms, support bones 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 favourite," since most patients improve on it. (Dr Peterson said he believes Ampligen is effective only for a very restricted population with very specific profiles.)

Excessive Rest Rejected There was general agreement among physicians on the treatment panels against excessive rest, with the exception of the first days or weeks of illness. Instead, they recommend staying as active as possible while avoiding relapse. Here is how several doctors responded to a question about rest therapy: Dr Cheney: "It does no good to shrink (activity) limits artifically." Dr Lapp: "Excessive rest only makes muscle tenderness and joint stiffness worse." Dr Gantz: "(The body) is not like a battery that needs to be recharged."

Reprinted from Emerge, Winter 1999