PBS NewsHour


A Brief But Spectacular take on chronic illness

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.

AIRED: April 22, 2021 | 0:04:23

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,

Disabilities Advocate: 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.