USA: PBS NewsHour segment April 2021 features disability advocate Rivka Solomon discussing ME/cfs and long COVID

Rivka on Twitter: "Tonight, the @PBS @NewsHour w/ @JudyWoodruff airs a piece on #MEcfs. Thx to an amazing @MassMECFS volunteer for this graphic. (Pix is of an @unrestfilm event yrs ago. Slide behind me is a statement of support for people w/ ME fr the entire Massachusetts Congressional Delegation.) https://t.co/Bz4vWxjNfM" / Twitter

 

Merged post

Link to video (it's about 4 1/2 minutes long):

https://www.pbs.org/newshour/show/a...-advocating-for-people-with-chronic-illnesses

There's a comments section but no comments yet (when I last looked).

My brain is not up to writing a coherent comment right now. But if someone else is feeling up to it then it might be a good idea to post links with more information about ME/CFS and/or long COVID.

Since the pbs.org site is US-centric maybe mentioning the recently proposed "COVID-19 Long Haulers Act" would be a good idea? Some links:

https://beyer.house.gov/news/documentsingle.aspx?DocumentID=5115

https://beyer.house.gov/uploadedfiles/covid19_longhaulers_act_summary.pdf

 

This was an impressive amount of information given in four minutes
https://twitter.com/user/status/1385371084896104448

 

Direct link to story on PBS NewsHour website:

https://www.pbs.org/newshour/show/a...-advocating-for-people-with-chronic-illnesses


ETA: Seems like it asks you to confirm what your local PBS station is, so it might not work outside of the U.S.

 

Ohhh this is good! I'd like to send this link to some people.

Curious if anyone outside of the U.S. or outside of an area with a local PBS station, if you can see this as presented in this link with Judy Woodruff?

https://www.pbs.org/newshour/show/a...-advocating-for-people-with-chronic-illnesses

Thank you Rivka! Always thank you for your advocacy. And everyone else who made this possible.

 

404 page not found.

In UK

 

I can see it all fine in Ireland.

 

Thanks @Wonko, @Tom Kindlon and @Sean.

Just saw the pbs version with Judy Woodruff introducing it is on youtube now.

https://www.youtube.com/watch?v=_6QEFXOZAOc

 

Read the Full Transcript

• Judy Woodruff:
  
  As we all hope and end to the pandemic is in sight, this past year leaves a spotlight on a disease often overlooked, chronic fatigue syndrome.
  
  This week, more than 1,000 people living with chronic illnesses lobbied members of Congress for more support.
  
  Now disability advocate Rivka Solomon offers her Brief But Spectacular take.
  
  
• Rivka Solomon:
  
  Leading up to this interview, I was definitely nervous and anxious, but I have done a lot of public speaking.
  
  However, what's tricky about doing these kinds of interviews is that you never know when your brain is just going to fly away, and I will not be able to remember what it is I want to say. I won't be able to formulate sentences.
  
  When I was 21, two of my college roommates and I all got mononucleosis at the same time. They got better in a month or so, and I essentially never got better. After a year of being bedridden, I had a few years of semi-remission, but it didn't last. It all came back with a second infection, pneumonia, and I stayed sick for three decades.
  
  They called it chronic mono, then chronic Epstein-Barr virus, then chronic fatigue syndrome. And now they call it ME/CFS, myalgic encephalomyelitis chronic fatigue syndrome. Most of us just call it M.E.
  
  There are up to two-and-a-half million of us in the U.S. with M.E., 24 million around the globe. We have no treatments, no cure, and people can be sick and disabled for decades, often bedridden like me, some unable to care for or feed themselves; 80 percent of people with M.E. got it after a viral or bacterial infection like me, and 75 percent of us are women.
  
  I might look vibrant and full of life right now, but what happens is that, many of us with M.E., all of us with M.E. have post-exertional malaise. That's called PEM. And that means that, after we do anything that requires any energy output, we will often collapse. We have a disproportionate payback.
  
  So, after I do this interview with you, I might end up bedridden and unable to move, literally. When you have M.E., it affects absolutely every single dimension of your life. Many of us, our families and friends don't believe that we're actually sick. It is a terribly lonely existence.
  
  Right now, there are millions who are getting sick with COVID-19 from the coronavirus, and some are not getting better. They're staying sick with what's called long COVID. Many with long COVID will likely be eligible for an M.E. diagnosis after six months of being sick, because they have many of the same symptoms as us.
  
  But something truly beautiful has come out of all this. The M.E. community and long COVID communities are helping each other. It is beautiful to see this. It's like the old-timers helping the newbies, but the newbies have much more political clout and are also helping us.
  
  One of the problems that we have had as a community is that there's been a faction of the medical establishment that has put forth and propagated the myth that this isn't a real disease, that it's actually a psychological condition.
  
  So, for example, the 1980s, "Newsweek" had a headline on their front — they had a cover on — sorry — as you can see, my brain is beginning to go, right? You can see that happening here.
  
  Even right now, as I'm doing this interview with you, I can feel the brain fog is taking over. And I can't remember what your question was, and I can't remember what the beginning of my sentence was. I don't remember the point that I'm trying to make.
  
  The one thing I want people at home to take away is to believe a person when they tell you how they're feeling. Don't dismiss them. Don't disregard them. Believe them and have compassion.
  
  My name is Rivka Solomon, and this is my Brief But Spectacular take on advocating for people with chronic illness.
  
  
• Judy Woodruff:
  
  And, Rivka Solomon, we thank you for sharing your story and the story of so many others.
  
  And you can find all of our Brief But Spectacular segments online at PBS.org/NewsHour/Brief.

 

https://twitter.com/user/status/1385509345870458882

 

By the way for those who don't really know, PBS NewsHour is as good as it gets for news reporting. I actually watch it pretty often, clips on Youtube anyway. None of that SMC influence or infotainment peddlers that are usually where bad stories about us come from. And Woodruff is also as good as it gets as newsreaders, a real pro.

 

Thanks to @Roy S for posting the transcript.

I don't think I have ever heard the experience of getting, then having ME for the long haul. expressed so truthfully.

 

She also wrote an article in The Washington Post about how ME/CFS affected her ability to participate in social/religious activities and how it was kind of a blessing to her when all these things had to be carried out online due to the pandemic.

For years, my chronic illness kept me isolated. The pandemic helped me get closer to my community.

https://www.washingtonpost.com/heal...5f3fec-ad21-11eb-ab4c-986555a1c511_story.html

 

Rivka on Twitter: "✨1 month ago the PBS NewsHour aired an interview w me on #ChronicIllness, #MEcfs, #LongCovid & postviral illness. So far its gotten 117,500 views (!!) on PBS's social media platforms. That is a lot of awareness raising! Grateful to those who helped with spreading the message✨" / Twitter

Rivka on Twitter: "I forgot to also re-state this freaking amazing fact: On any given night, the PBS NewsHour has a viewership of 1.1 million. So in theory, that’s how many people saw the interview “live” when it first aired." / Twitter