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NPR Boston affiliate: "Often Bedridden For 25 Years, Advocate Welcomes NIH Move"

Rick Sanchez

Rick Sanchez

Messages
84
RivkaRivka said:
Hi all. Here is an essay I managed to write last week, after the NIH news:

http://commonhealth.wbur.org/2015/11/nih-chronic-fatigue-syndrome

I wrote the essay about the government's ground breaking announcement of help for ME/CFS. It is on the website for National Public Radio's Boston affiliate, WBUR. It is accompanied by a 7 minute radio segment in which the reporter interviewed both me and investigative journalist David Tuller -- otherwise known as My Hero -- for his smooth take down of Goliath, i.e. the PACE study that trivializes this serious disease.

The 7 minute radio piece airs today sometime between 3-4 pm ET on WBUR.org, likely at 3:15 or 3:20 pm, during WBUR's 1 hour "Radio Boston" show. It can be heard live on the radio or online at WBUR.org. And after the show is over, the 7 minute radio segment will be linked next to the essay.

Please spread the news. And add a comment, if you are able, under the essay on the website. They are considering doing more on ME/CFS, on their more widely heard *national* show, and showing reader interest could tip the scales.

Warmly,
Rivka
Click to expand...

Amazing!

Thanks for everything you have done!
 
R

RivkaRivka

Senior Member
Messages
368
by the way, i did hear two areas in the audio clip (which i listened to live, and is now on the website with the original essay) need correcting, in my mind:

1. they called ME our new name on the radio clip. ME is not a new name. It is the old name from decades ago, long before the gov't began calling it CFS. The World Health Org has been calling it ME for decades. as we all know, it was the Institute of Medicine that gave it a new name recently (SEID, systemic exertion intolerance disease, or something like that). but also as you know, few are using it or like it.

2. they discussed the reason no one researches CFS, and the impression they gave is that the CFS name was why. well, that *is* one element of it. the name makes it sound trivial, for sure. but really it is the fact that the gov't purposefully made it seem like it was a made up all-in-your-head illness and they backed that up by not funding any research for CFS. i mean, if you called a disease something totally silly, like Snotgrass Fiddleworks, and it gets an great NIH budget, then everyone would surely study Snotgrass Fiddleworks. so while the name "fatigue" certainly dissuades researchers, it is really a matter of the lack of gov't money available to study CFS. and that was a purposeful gov't decision for the last 30 yrs. i mean, i'm sure the NIH studies plain old fatigue (not related to CFS), and it likely gets loads of money.
 
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