• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

RivkaRivka

Senior Member
Messages
368
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
 

RivkaRivka

Senior Member
Messages
368
thank you @Vasha, for your great comments and support. of course the process of writing this and finding it a home has utterly slammed me. i forgot to write how shaky i get with any energy output. like right now. :)
 

OneWaySurvival

Senior Member
Messages
115
Location
USA
Yes, Rivka. I know how much this costs you. Thank you so much for your excellent advocacy here! (which builds on past efforts like your solo demonstration a few years ago) You have inspired many, including me, that we can all make a difference - even in solo - but smart advocacy. Even more so when we team up.

The struggle and crash from these moments are sort of a personal donation to the community. But it's all finally paying off!
 

RivkaRivka

Senior Member
Messages
368
thank you @OneWaySurvival for your support and kind words! it took me 6 wks to recover from that one woman demo in front of HHS in wash dc. ha!

i'm going to go listen to the interview now. david tuller will be on it too, just a bit. it should start at 3:15 pm ET, which is just about 10 minutes. you can listen at WBUR.org, at their LISTEN LIVE button. it is only 7 min long.

xxoo
rivka
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
i'm going to go listen to the interview now. david tuller will be on it too, just a bit. it should start at 3:15 pm ET, which is just about 10 minutes. you can listen at WBUR.org, at their LISTEN LIVE button. it is only 7 min long.

Argh, missed it! Was it recorded?
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
i'm going to go listen to the interview now. david tuller will be on it too, just a bit. it should start at 3:15 pm ET, which is just about 10 minutes. you can listen at WBUR.org, at their LISTEN LIVE button. it is only 7 min long.

Will this segment be on PRI's "The World" radio program?