Listen to The Pulse (on WHYY) Fridays at 9 a.m. and Sundays at 10 a.m. on WHYY-FM.
“March 12, 2015 The Pulse
Chronic fatigue syndrome gets new name, enhanced recognition
Tasha Kelemen, 42, directs a local non profit. She doesn’t look sick, but she’s had a hard time convincing peers — even doctors — that anything is wrong with her.
“A typical experience will be the resident comes in, looks at my folder, sees that I have chronic fatigue syndrome listed as my primary diagnosis, and then says to me, ‘Well, I think that must be what I have,'” she recalls, laughing. “You sort of learn that there’s no point, that you sort of have to control your anger.”
The condition known as chronic fatigue syndrome is mysterious and complex. It has stumped the medical system for centuries. There’s no test for it, which Kelemen and others say, along with its current name, makes the condition easy to dismiss.”
Listen to the interview here:
Speak Up About ME 
The final NIH P2P report will be out on Tuesday 14 April 2015
Published March 6, 2015 Uncategorized Leave a CommentTags: advocacy, NIH, Office of Disease Prevention, P2P for ME, Pathways to Prevention, public comment
ODP had originally indicated that the final report would be published a couple of weeks after the end of the public comment period (16 Jan 2015). The time frame now seems to be more like 12 weeks after the end of the public comment period.
(fwiw – there was a similar delay in publication of the final opioid P2P report. It was due out in October 2014 and was not published until Jan. 2015).
From the ODP (Office of Disease Prevention) website:
“Draft Report
Download the Draft Report (PDF – 3.45 MB)
An unbiased, independent panel developed a draft report of the 2014 NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, which summarizes the workshop and identifies future research priorities. The public comment period is now closed. The final report will be available on the ODP website on Tuesday, April 14, 2015.”
https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/workshop-resources#draftreport
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