Perhaps the most practical session of the conference was a late addition to the schedule. Early Monday morning, about three dozen physicians and a few nurses and therapist gathered to discuss their experiences in treating patient, to ask each other questions and to share what they have learned.
Among the issues raised were prescribing narcotics, treatments for orthostatic intolerance, the role of anti-depressant medications, improving sleep and dealing with domestic violence, disability and managed care concerns.
Start with sleep problems
There was general agreement that the first target of treatment should be improving sleep, and several reported success with Klonopin. Because of the difficulty in getting managed care programs to pay for a sleep study, one doctor said she tries several medications first and then orders a formal study if the medications aren’t effective. She noted that most sleep labs want a patient to be medication-free, but she insists on keeping them on their medications because that is the condition under which they’ll be trying to sleep. Doctors noted that in some areas sleep labs have long waiting lists.
About half the doctors in the room said they used anti-depressant medications as a first line of treatment, not for depression but because they seem to have some beneficial effect on orthostatic intolerance and potentially on the immune system. These drugs called SSRIs (selective serotonin re-uptake inhibitors) affect nerve impulses in the brain and “may be correcting part of what’s going on in the brain, especially in the temporal lobes which are largely serotonin controlled,” one doctor explained. For some patients, such medications may help clear their thinking.
Salt and fluid loading
For orthostatic intolerance or neurally mediated hypotension, the doctors seemed to agree that one should start with salt and fluid loading before using fludrocortisone. “For those it helps, stick with it,” was the advice. Doctors reported some patients find compression stockings helpful to avoid blood pooling in the legs. Even the more common knee-high stockings made for people who are on their feet all the time may be helpful, some suggested. Another simple technique that can help is elevating the head of the bed or placing a foam wedge under the patient so there is less of a change from lying down to standing.
In talking about particularly challenging patients, doctors said it often helps to reduce the number of drugs patients are taking. A lot of medications “mess up sleep patterns,” one doctor noted. Several reported having to “detox” patients from multiple medications, and one noted he had trouble “separating out the effects of substance overuse from CFS pain in patients taking a large quantity of analgesics.” For patients who need strong pain medication, some of the doctors reported having success with narcotics, noting they can lead to clearer thinking. Patients should be on a low, stable dose, with preference for the slow-acting Oxycontin or MS Contin.
Domestic abuse a concern
The doctors raised the issue of domestic violence as a component of the illness. “If someone always comes in with a father or husband and they never leave the room, I suspect it,” one doctor said. Another said he had admitted a patient to the hospital in order to see her alone. Another noted that “family members are so frustrated at dealing with this person who looks well” and those frustrations may lead to abuse. They also discussed the diagnosis of Munchausen’s syndrome by proxy, in which a parent may feign or exaggerate an illness in a child to serve the parent’s purposes. A psychologist noted that while Munchausen’s syndrome may be the problem in a few rare cases, wrongfully accusing a family can cause a great deal of harm.
Clinical research encouraged
Dr. Nancy Klimas, who led the discussion, said she hoped to hold more such discussions at future meetings. She also noted that an increasing body of research is being done in private practices. She told the doctors that the American Association for Chronic Fatigue Syndrome could help them set up a study and offer support with one of the most difficult aspects of research, the statistical analysis. They talked briefly about the possibility of pooling data, especially as a means of studying the course of the illness over a long period of time.