I had a candid conversation with Dr. Ian Lipkin this week in which he discussed his ME research, the government’s thinking when it comes to ME and how to get
more research funding dollars from the government. I'm working on a story, which will be published here soon.
Saturday, May 10, 2014
Tuesday, January 28, 2014
IOM Testimony
Below is my testimony from yesterday's conference at the Institute of Medicine. To watch it, click here.
My name is Mindy Kitei, and I’m
a journalist. I’ve been reporting on
myalgic encephalomyelitis for more than twenty years and started my blog, CFS
Central, in honor of my friend Nancy Kaiser, who died of the disease in 2008.
Fifty of the finest ME experts
believe that the IOM lacks ME expertise and that the government should adopt
the Canadian Consensus Criteria definition immediately.
Patients believe that the IOM
will devise a name worse than chronic fatigue syndrome, something like “chronic
multi-symptom illness,” the meaningless moniker the government and IOM use for
Gulf War Syndrome. On the IOM website, a
curious diagram that accompanies an article by Dr. Daniel Clauw, lists several
diseases: Gulf War Syndrome, fibromyalgia
and CFS, among them, all covered under the big umbrella of somatoform disorders,
psychiatric ailments that just look like physical diseases.
Tell that to Nancy Kaiser, who
experienced multiple seizures a day. Tell
that to Jerry Crum and Leanne Hyneman, both of whom I interviewed in 1994 and have
since died from ME. Jerry was in his
fifties; Leanne, in her early forties.
Patients believe that the IOM
committee will lump real ME patients with the flawed cohort that CDC studies. Dr.
Leonard Jason, the premier expert on ME definitions, published that CDC’s
cohorts have depression, not ME. Imagine
studying HIV—but looking at patients who suffer only from depression, not
HIV. It’s insanity.
Not only does CDC study the
wrong patients, it conducts the wrong studies. Take its new exercise
study. The hallmark of ME is
post-exertional collapse.
But Dr. Chris Snell published that exercise-capacity
deficits in ME aren't really evident until day two of testing. The first day patients resemble deconditioned
controls.
So what
is CDC doing? A one-day test. Why does CDC want patients to look like couch
potatoes? So that the government can
write off the ME epidemic of seventeen million souls worldwide, one million in
the U.S., the same number with HIV/AIDS.
The best predictor of future
behavior is past behavior. In the IOM’s
book Gulf War and Health, the IOM
Gulf War committee writes about CFS—since the symptoms resemble Gulf War—and
recommends graded exercise for CFS, which can lead to crashes that last months,
even years. Graded exercise is also recommended
by CDC and psychiatrists like Simon Wessely—both of whose work the IOM Gulf War
committee endorsed.
Given its clear bias, the IOM
must recuse itself. And the government
should adopt the Canadian Consensus Criteria and spend that $1 million for real
research. Thank you.
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