Clinicians Share Experience, Insights at AACFS Meeting

One of the most popular sessions at the AACFS conference has come to be the Clinician-to-Clinician forum. The informal structure of this session, led each year by CFS experts, allows physicians the opportunity to question one another about the challenges of managing patients with CFS and fibromyalgia (FM). Most of the 80 or so practitioners attending this year’s session indicated that they generally screen their CFS patients for FM, and many have begun querying patients about symptoms indicative of orthostatic intolerance. While few order expensive head upright tilt tests, more do simple tests of quiet standing to look for symptomatic changes in their patients. Caution was advised, though, by those familiar with these in-office surrogates. Orthostatic challenge can provoke serious reactions in some patients, including cardiac arrest, and some physicians felt that tests should be performed only in hospital settings where emergency treatment is readily available.

Treatment of pain was a topic of great interest to most attendees, who agreed that it was among the most challenging CFS symptoms to effectively treat. Most practitioners start with non-pharmacologic approaches to manage pain, including stretching, distraction, and acupuncture. Nonsteroidal anti-inflammatory drugs (NSAIDs) are the next line of treatment, and Vioxx was mentioned as being better tolerated and more effective than other NSAIDs. Tricyclic antidepressants and muscle relaxants are used next, with Ultram being prescribed frequently. Opioids are reserved for patients whose pain fails to be appropriately controlled by other medicines. Darvacet was the most popular controlled medication, although one FM expert noted that opioids do not seem to control the pain of FM. The majority indicated that fewer than 5% of their CFS patients required this level of pain control, but that they felt confident prescribing it when appropriate. Improving sleep was felt by many to be central to controlling pain, although there was little discussion of how to manage sleep disorders associated with CFS.

For headache pain, cranial sacral release and deep tissue release therapies were found to be helpful, and some physicians report success combining medical treatment with regular chiropractic adjustments. Diamox and Imitrex were two medications mentioned as being somewhat effective for headache pain. Elimination diets were useful in detecting foods that were causing chronic headaches due to undiagnosed food allergies and sensitivities.

In discussing treatment of orthostatic intolerance, clinicians suggested fluid and salt loading for two months before prescribing any medication. Midodrine, a relatively new drug, was said to be more effective than Florinef in treating patients who required further intervention. In more research-oriented open label trials, Epogen returned patients’ low red blood cell masses to normal, but did not offer symptomatic improvement.

A few other treatments were discussed more generally. Fish oil (EPA) extracts and evening primrose oil were used by some to inhibit tumor necrosis factor production; naltrexone was raised as an "interesting" possibility to stimulate a TH1 immune response; and the mild analgesic effects of Plaquenil were described as potentially helpful. Compared with the same session held in October 1998, fewer clinicians were using DHEA, due to a lack of sustained improvement in their patients.

There were no simple treatment solutions offered and most participants stressed the need to employ several approaches at once to manage CFS symptoms. Clinicians are increasingly recognizing that treating CFS demands the integration of medical, alternative, and supportive modalities, a challenge for any health care provider, made even more difficult in this era of high volume managed care.