The emergence of long COVID has drawn attention to poorly understood chronic illnesses. This week, over a thousand people living with those diseases signed up to meet virtually with members of Congress to push for more funding for chronic illnesses. Disability advocate Rivka Solomon gives us her Brief But Spectacular take on advocating for those with chronic illnesses.
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.