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IOM Recommends Replacing CFS with SEID

Exertion intolerance

Exertion intolerance

Chronic fatigue syndrome (CFS) is a controversial diagnosis that has also been called myalgic encephalomyelitis (ME or ME/CFS), post-viral fatigue syndrome (PVS), chronic fatigue immune dysfunction syndrome (CFIDS), Iceland disease, “yuppie flu,” and many other names. A new report from the Institute of Medicine (IOM) says that none of those names really fit the disease and recommends it be re-named systemic exertion intolerance disease or SEID.

ME/CFS is thought to affect as many as 2.5 million Americans. The cause remains unknown, but in many cases it appears to have been “triggered by an infection or other prodromal event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy meals, and rarely blood transfusions.” Some doctors question its very existence and interpret the symptoms as imaginary or psychological.

The IOM examines the evidence base

At the request of several government agencies including the NIH and the FDA, the IOM convened a committee of 15 experts to examine the evidence base for ME/CFS. They reviewed over 9,000 published studies and heard testimony from patients and advocates. Before publication, an additional 15 experts were asked to provide peer review. The full text of the report is available free online. (more…)

Posted in: Science and Medicine

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Rituximab for Chronic Fatigue Syndrome: Jumping the Gun

Now that the XMRV myth has been put to rest,  patients with Chronic Fatigue Syndrome (CFS) are no longer jumping the gun to demand anti-retroviral treatments. But they are jumping the gun in new ways, based on very preliminary data coming out of Norway.

A correspondent in Norway wrote to tell me patients from Norway with myalgic encephalitis/chronic fatigue syndrome (ME/CFS) are travelling to the US to have Dr. Andreas Kogelnik in San Francisco treat them with IV infusions of rituximab, apparently to no avail. A course of treatment costs over $6000, not to speak of travel and other expenses. (more…)

Posted in: Clinical Trials, Medical Ethics, Pharmaceuticals

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