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A Major Flaw in the IOM's Definition of ME/CFS

I

Iquitos

Senior Member
Messages
513
Location
Colorado
anciendaze said:
@Valentijn

I certainly see words in the report which could be interpreted as defining the PEM we experience. I also see words which say other things. They mentioned a paper claiming 64% of patients with major depressive disorders had PEM, and expressed limited skepticism, but this is not the same as rejecting an overly broad definition. All the hard decisions have been deferred. I feel like an ancient Roman citizen hearing "Let the games begin!" (in this case meaning word games and bureaucratic games.)
Click to expand...
(my bolding)

The IoM recommendations do not have to be taken seriously by the US health bureaucracies. I've seen a couple of other IoM reports that have been ignored by the government.

http://www.vox.com/2014/8/7/5967239/marijuana-legalization-drug-schedule-DEA-FDA-HHS

excerpt: In the 1990s, the federal government tasked the prestigious Institute of Medicine (IOM) to study pot's medical use. IOM's in-depth report, released in 1999, concluded marijuana is "moderately well suited for particular conditions, such as chemotherapy-induced nausea and vomiting and AIDS wasting." The report also found that the drug is not particularly addictive and not a gateway drug."

and: "John Benson, one of the authors of the IOM report, previously told the New York times that the federal government's 2006 review was wrong. The federal government "loves to ignore our report," Benson said. "They would rather it never happened."

The IoM was also charged with and paid to decide whether pregnant women using WIC could buy potatoes with their EBT cards. The government has ignored the report.

Moral of the story: We need to get back to what we were doing before this report came out: trying to get HHS, NIH the CDC and other Federal bureaucracies to do the right thing and fund the research they've denied us for over 30 years. The recent IoM report may consolidate some of the ammunition we need to do this, but the report itself has no official power to change anything. Yes, it's time to ACT UP! while the FDA, HHS, NIH & CDC conduct business as usual.
 
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