Thursday, March 13, 2014

CFS or depression? Dr. Jason's differentiation

Be Well

Chronic Fatigue Controversy
by David Tuller,  |  March 12, 2014

Chronic fatigue syndrome has devastated the lives of hundreds of
thousands of Americans. Everything about the condition--what to call
it, how to identify and define it, what treatment is indicated--has
been subject to dispute. In fact, the patient community has long been
at odds with health officials, who have frequently framed the illness
as largely psychosomatic. Yet abundant evidence has linked chronic
fatigue syndrome to neurological, immunological and hormonal

Now a government-sponsored panel is seeking to develop a new set of
diagnostic criteria for the disease. The Department of Health and
Human Services commissioned the report last September from the
Institute of Medicine (IOM), an independent organization whose
well-regarded reports frequently inform government policy about
controversial and complex issues.

But the panel, which recently held its first and perhaps only public
hearing, is facing strong opposition from top researchers and doctors
as well as many patients. They are upset because eight out of 15 panel
members have no expertise in the illness. (In most circumstances, the
diagnostic criteria for a condition are developed by the field's top
clinicians and researchers.) The critics fear that the panel will once
again approach their illness from a psychiatric perspective, leading
to misdiagnoses and to treatments that are effective for people
suffering from depression and other mental health illnesses but not
for those with chronic fatigue syndrome.

A bit of context: The word "fatigue"--as everyone who knows anything
about the illness agrees--trivializes the experience of patients, who
experience a profound exhaustion. Both experts and patients prefer a
more scientific name: myalgic encephalomyelitis, which means "painful
inflammation of the brain and spinal cord." (In fact, the illness is
now frequently referred to by the acronym ME/CFS; the IOM panel is
also supposed to render a verdict on the name when it issues its
findings early next year.)

No known cause of ME/CFS has been identified, and no medication is
approved for treatment of the underlying disorder. Experts now believe
that something, in most cases an acute viral infection, triggers an
aggressive immune response that never shuts itself off. Because the
illness is currently diagnosed through symptoms that can resemble
cases of depression, distinguishing between the two can be difficult.

Leonard Jason, Ph.D., a professor of psychology at DePaul University and a respected ME/CFS researcher, offers perhaps the simplest approach to the task: He asks patients what plans they would make if their condition improved. A patient experiencing a depressive disorder, he explained, would likely have a hard time answering. "But someone with ME/CFS would probably begin making lists of all the things that they wanted to do," he said in a recent interview with BuzzFeed about the issue.

One significant stumbling block for research and treatment has been
the lack of a single set of agreed-upon criteria. Scientists in the
U.S. and Europe have developed half a dozen or more case definitions
over the years, for both research and clinical care. A 1994 definition
developed by the Centers for Disease Control is considered
out-of-date; it requires six months of fatigue and four out of a
grab-bag of eight of the common symptoms.

Many patients, doctors and researchers prefer a 2003 version developed
by leading clinicians and scientists. Unlike the Centers for Disease
Control and Prevention (CDC) definition, this version requires the
presence of exhaustion but also of an unusual symptom called
"post-exertional malaise"--poor recovery of energy after modest or
minimal physical effort. Many patients and experts consider this, not
fatigue per se, to be the cardinal symptom of the illness. The 2003
definition also requires the presence of sleep disturbances and
cognitive dysfunctions. The CDC definition mentions but does not
require these symptoms.

Despite the IOM's reputation, patients and experts are concerned not
only about who is on the panel but also about their charge. The
government has requested that the panel consider a range of existing
definitions, including some guidelines that appear to identify a
population disproportionately suffering from depression. Although
dozens of experts signed a letter urging the Department of Health and
Human Services to adopt the 2003 criteria as the basis for further
refinements and abandon the IOM study, Secretary Kathleen Sebelius
flatly rejected the request.

The IOM, which is supposed to deliver its report early next year, is
receiving approximately one million dollars for its work. Given that
annual spending by the National Institutes of Health on ME/CFS is only
five million dollars--much less than many illnesses that affect far
fewer people--the experts noted in their letter that it made more sense
to spend available funds on researching the pathogenesis of the
disease rather than on new diagnostic guidelines. The experts and
patients fear, understandably, that if the IOM panel adopts a
fatigue-oriented definition that does not prioritize other symptoms,
their efforts to gain respect and credibility for ME/CFS will have
suffered a crippling blow.

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