My husband’s written comments for the January 27, 2014 IOM meeting:
"My name is Edward Burmeister. I am an attorney with the world’s largest law firm. My wife, Jeannette Burmeister, is also an attorney who worked at the same firm until she became disabled with ME eight years ago.
I am writing to express, in the strongest terms possible, my objection to the IOM contract to recommend clinical diagnostic criteria for ME/CFS ('IOM Contract'). Moving forward with this IOM Contract is directly against the interests of ME/CFS patients, is in direct opposition to the opinion of 50 ME/CFS experts and is in disregard of the recommendation of the Chronic Fatigue Syndrome Advisory Committee ('CFSAC'). The only reasonable and sensible step to take at this time would be to terminate this ill-advised contract now....
The IOM Contract cannot be 'saved' by tinkering around the edges. In light of the essential facts—(1) NIH control, (2) organizational conflict of interest, (3) majority of non-experts and several IOM 'regulars' as committee members and (4) very little by way of public meetings or review, particularly of the ultimate recommendation—the only appropriate course of action is to terminate this contract or task order now before the inevitable damage to the ME/CFS patient community becomes permanent."
