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.


  1. I missed this when listening last night (UK) as the live stream failed. Wish I had heard it...... Brilliant. Well said! Thank you!

  2. Powerful and passionate yesterday Mindy. Many thanks!

  3. Mindy,
    This is absolutely brilliant commentary....and so VERY true. I was sick and didn't hear it, but I certainly thank you for such a powerful testimony.

  4. Excellent, Mindy. Thank you for writing this, traveling to the meeting, and presenting with such passion.

  5. Your testimony was inspiring, Mindy. Thank you for speaking so clearly in opposition to the IOM contract.

    Patricia Carter

  6. Great presentation yesterday, Mindy. Thank you for attending and speaking so forcefully.

  7. Mindy -- thank you so much!! Just terrific work.

    (This is Libby by the way...can't figure out all this google stuff)

  8. I couldnt watch it but from what you've wrote about your presentation.. its brilliant, couldnt have been put better.

    Thank you Mindy.

    Tanya Selth

  9. Mindy,

    Many thanks you for your continued, selfless efforts.

    John Buettner

  10. Your testimony was one of the standouts in an absolutely stellar lineup of patient presentations. I was totally blown away. Thank you! Please keep it up!

  11. Mindy...thank you! I have ME and was happy to read this! Thank you for your advocacy! I wish I had known I could have listened to this testimony! Is there somewhere that it is still available to listen to? Thank you again so much!

  12. Thank you for your wisdom and excellent presentation. I too know of long time patients that die from this dreadful disease

  13. Just excellent Mindy.

    Tanks so much.


    1. I was thrilled by the clarity and passion of your testimony. Heartfelt thanks.

      Sue B.

  14. Thank you Mindy!


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