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IOM Public Meeting, January 27, 2014: Part 2: CDC Multi-Site Study and P2P


Senior Member
By Erica Verrillo
CFS Treatment Guide
The two presenters were Elizabeth Unger, who talked about the CDC Multi-site Study, and Susan Maier, who explained the P2P process.

Dr. Unger's presentation of the CDC study demonstrated the flaws that have been apparent in every federally-sponsored study of ME/CFS to date. The instruments used in the study are old stand-bys, and of dubious relevance. The reason they were chosen for this study is that, with one exception (the DePaul questionnaire), they are standard tools of the trade. The problem is that ME/CFS is not a standard illness....

Dr. Unger was followed by Susan Maier (Deputy Director of the Office of Research on Women's Health (ORWH)), who gave a presentation that was so laden with jargon and bad syntax that it was nearly impossible to follow. (She compensated for her inability to form a coherent sentence by a great deal of hand waving.) Maier's subject was the Pathways to Prevention (P2P) panel that is being assembled to review research definitions for ME/CFS....

And if this were a trial, as Maier proposed, wouldn't the defendants (ME/CFS patients) have the right to face their accuser? Doesn't a jury have to deliberate until they reach a decision - instead of being given a deadline of 24 hours? Wouldn't they have more than two days to hear arguments? Wouldn't the defendants have a say in what constituted evidence?

To employ a more apt judicial metaphor, the P2P panel isn't a jury - it's a kangaroo court.