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ME/CFS on NPR's Morning Edition Sept 5

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
NPR will have a segment on ME/CFS on Sept 5. The CFIDS Association of America's Facebook page says
"Tune in to NPR on Mon., Sept. 5, for 2 separate CFS reports for Morning Edition. Unfortunately, we dont know what time during the show the stories by Joanne Silberner and Patti Neighmond will air. You can also listen to the podcast or program archive posted later in the day at http://n.pr/ox6DH4. Both reporters interviewed several CFS patients and clinicians/researchers to cover different aspects of the illness. Among those interviewed were Dr. Anthony Komaroff, Dr. Katrina Berne, and Dr. Lucinda Bateman, although their comments may or may not be used on-air. NPR Morning Edition: http://www.npr.org/programs/morning-edition
.
http://www.facebook.com/#!/notes/the-cfids-association-of-america/npr-scheduled-to-cover-cfs-on-mon-sept-5/10150364936140539

You can listen to the podcast after it airs at http://www.npr.org/programs/morning-edition/
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
Well, that story turned out to be pretty effing awful. It described how "talking" and exercise could make CFS better, citing the PACE study as evidence. Then they spoke to a psychiatrist from Brigham & Women's Hospital in Boston, who talked about how developing a positive attitude through CBT and exercising would cure CFS, because it stemmed from thinking you would never get better and getting deconditioned. That was followed by saying that Lucy Bateman was sceptical about the PACE study because it implies the disease is psychosomatic. They didn't mention any of the recent studies about physical findings, like the Light studies or the proteins.

Don't bother listening unless you've got a strong stomach today.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Didn't they listen to what Komaroff told them? I guess he explained them what ME/CFS is (as far as it's known). And will the CAA make a statement? Even if they say they are now purely about research, i feel they should take action if there is misleading and wrong reporting about ME/CFS research.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I've listened to it now. Wasn't there another segment on NPR some weeks ago, where they reported about the "death threats" story? Maybe there was some connection and it was the same people behind both. Maybe friends of you know who.

At least it was not very long and the part where they talked about what Lucinda Bateman thinks was ok. The first doctor really wasn't very smart... I know the symptoms are not lethal, at least not immediately. But does that help me any if my muscles just start to let go or my brain doesn't work properly anymore? I still can't do what i want to do then. And just look at the statistics and the cases then you will see it actually does not go away in most cases. But it probably could if finally people would bother to find out how to make it go away. And just look at how pale me and probably a lot of other people with ME/CFS get. It doesn't change if i feel better about it. It's so obvious something in the body is wrong. I'm getting tired of this sh... Not tired in the ME/CFS sense...