Roy S
former DC ME/CFS lobbyist
- Messages
- 1,376
- Location
- Illinois, USA
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.
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dang think i missed it x
https://www.pbs.org/newshour/show/a...-advocating-for-people-with-chronic-illnessesPBS News Hour runs each night on You Tube. So you can go find it on you Tube.
PBS Newshour re-runs several times a day, and most areas of any size have more than one PBS station, which will also run it at different hours. Browse around. I think you'll find it.dang think i missed it x
If you have a smart TV, another way to watch is to download the PBS app, and you can select the News Hour programs for today (or previous days if you want) so watch at your leisure. I just watched it, Rivka did an amazing job! I wish Judy Woodruff had done an actual interview, but even so it was amazing to get this coverage!dang think i missed it x
Thanks Sushi. It was wonderful to see ME/CFS being presented by Judy Woodruff on NPR, and Rivka as always is great speaker for us.
Very well done!
I wish Judy Woodruff had done an actual interview, but even so it was amazing to get this coverage!
Join us in thanking the PBS NewsHour for shining a light on a hugely under-reported story: What life with #MEcfs is really like, and its link to #LongCovid. If we had dedicated research funds to ME/CFS years ago -- to find out how to prevent, treat and cure post-viral illness -- we may not now have millions of new people whose lives have been upended by #LongCovid.
View the video and send your thanks this way:To thank PBS NewsHour via email:To thank PBS NewsHour on Twitter:To thank PBS NewsHour on Facebook:To thank the superstar PBS NewsHour anchor and producer Judy Woodruff via TwitterJudy Woodruff’s tweet about the piece is found here, and comments to her about the piece should be posted hereTo thank Brief But Spectacular producer Steve Goldbloom via Twitter:
I wouldn't have changed Rivka's presentation in any way - it was excellent! What I wish had been possible would have been to interview Rivka after her presentation and ask in-depth questions about why ME/CFS has been neglected for 50 years, why almost 0 dollars in research for one of the most devastating illness on the planet, and suddenly the government throws over $1 billion at long covid with a few thousand patients, compared to 2.5 million ME/CFS patients- I know this type of interview would have been an impossible ask but maybe some day - I think the full story deserves and needs to be told. Also including how we've been maltreated by the medical profession. I know, I'm really dreaming now!well, I think it was better to let her speak fully about the experience, rather than an interview would have been likely very different. Or wandered off.
I know this type of interview would have been an impossible ask but maybe some day - I think the full story deserves and needs to be told. Also including how we've been maltreated by the medical profession. I know, I'm really dreaming now!