Physics Girl Dianna Cowern Battles Severe ME/CFS After Long COVID

I want people to know about this disease. I want them to know how bad it can get. YouTuber Diana Cow is dealing with long co. She's had it for 9 months and it's not getting any better. Every month she would lose a little bit of capability. This is a really good decision. Diana will often call me in there crying. says, "I wanted to have a life with you. I wanted to have a family with you. I wanted to have kids. It's the thing I want most in the world, and I'm not going to be able to do that, and I don't know if we're going to be able to." Diana has long co, and that has triggered something called MECFs. Diana's health has spiraled down to the point where she can barely move. In the past week, she has been to the ER

twice. ME/CFS is distinct from long COVID because ME/CFS has a particular symptom called postexertional malaise. If you try to do something, if you exert yourself, you get really sick and you pay a huge cost for doing that. Not everyone that has long CO has ME/CFS. Long CO includes things like brain fog, fatigue, POTS, and other stuff. That's too much to remember and explain right now. Okay. I just feel like a second ago we were laughing hard on the couch planning to make a video and now Physics Girl is going to be shut down for years with how we're talking about it.

So, I don't know if we start with how long it's been. It's been over two years of being sick, essentially approaching 2 years of like bed bound. Her quality of life is unimaginably low right now still. She can't get out of bed. She can't clean herself. She can't take a shower. She can't I think the thing that's shocking to me as well is like this lack of ability to have anything really to occupy your mind, right? like it's not like she can't really read or audio books or movies or I don't know from what I can see. So that's improved. I think there's a little bit of good news here. I mean we just finished our third movie in the past 2 months. So this is like huge. She couldn't watch a

movie for over a year and a half. That's progress. Started in 5minute increments and now up to 15-minute increments. We can like talk a bit but like she can't have like an animated discussion. She can't get into something that's like you know emotionally deep or interesting. But the problem for Diana is that she's had such severe mcast this kind of hyperinflammatory but immune response to like anything entering her body. I mean I think that's something that kind of became clear to me that this is not just like one disease or one thing that's going on. It's layered symptoms or layered diseases and an attempt to treat one ends up triggering another. She was feeling really good and she tried to do

a little bit of stuff for her legs. I'm like talking very small just like moving them and yeah just moving them or like just she was just putting a little bit of pressure like with her foot like against the ground you know and did that like on with each foot for you know grand total of 30 seconds or something like that and just severe crash after that for like a week. Yeah. I can't imagine. She expressed to me that was sort of her biggest fear was that she's just never going to get better. That's that's her biggest fear. Yeah. All right. And I am here visiting Diana. Hi. Good to see you, Diana. Come over and say hi. Oh, I can show you what I've been up to. Yeah, absolutely. Working on lots and lots of embroidery projects.

This is my latest one. I love this one. That's a cool one. This is what a finished product looks like. Nice. But you started feeling better. A lot of things have been changing. You were able to get up and walk. You were able to eat chocolate. You were doing but also we I've watched a serious TV show. I've watched Severance. Nice mystery. It takes some thinking. Well, I can walk also. Oh my god. Look at you walking around, dude. You're not using anything. No. Surprise. Wow. I still have a long way to go. I still feel really sick. In February, Diana had a crash. She'd been, you know, spending a couple hours a day embroidering. She'd been watching TV in a matter of days,

you know, three months worth of gains kind of just disappear. Her depression is a lot worse. Her outlook on life. Luckily, they seemed to come back once she got out of the crash, but that's there's no guarantee of that. You are still crashing from those things, right? Yeah, I am. And I don't even know what that crash was from. I have a suspicion. I know. So, one of my friends in the MACFS community is really, really, sick. Tobias lives in Germany, but we became like fast best friends just so quickly, I think, because we had the same experience and I knew exactly, you

know, what he's going through in a way that no one else who hasn't been through this could possibly understand. He got approved for maid. Have you heard of that? no medical assistance and death and that just has been tearing me apart. That's probably why I crashed. Just the emotional aspect of it. I don't know what it was about just like talking to someone else who's, you know, suffering with the same thing. Somehow it finally allowed me to think back on what my life was like before all this happened because I couldn't for a while cuz it made me too sad. What was his personality like? What did he like to do? More sort of painting a picture of what Tobias was like before he was sick. Yeah. The um most prominent

thing was he was very funny. Yeah. We had the dog Molly and was affectionate and played with him and ran with him. Was a hard worker. He was very smart. I think he's the smartest person I know. He loved music. I did traveling a lot and to just hike in the woods for free hours with the dog and just nature and spring and soak in the sun. He was positive and in the beginning all the time, but then as the sickness, you know, progressed, those times got less and less. October, she could, you know, go walk around the block for like 15 minutes.

November was 10 minutes. December was housebound. January was bedm she never came back as who she was before then. So he got sick in 2010 and at first he was like 90% uh of his capability and it got worse and worse. He had to uh quit gyms. Then in December 2021 he just couldn't get out of bed one day. You know I can't talk to Tobias. I just text with him back and forth. like that's all he's capable of. So, he even has to like premedicate himself to be able to text. He wanted me to share these specific things about the disease and his experience. You can't even call this quality of life. It's just constant waiting, just hoping for the day to end so you can take your sleeping pills and

escape the situation as fast as possible. That's what every day was like when I was really severe. He's been sick for 15 years. He can't roll over, so he just stares at the ceiling all day. He can't change his own clothes. I mean, I couldn't even wear clothes, but like this is reminiscent of how sick I was for about three months and he's been this sick for 4 years. I say I was about that sick. I think he's now much worse because he's in significant amounts of pain. So, what Tobias had to go through was he was forced for a year plus to stay in the hospital. He was also forced to stand over and over. He couldn't look at a clock or a phone. He was fed through a pickline. He's 6'2 and he

weighed 100 lb. He has this burning heavy feeling in his muscles that I have this exhaustion that I feel in every cell. It's too much stimulation to see a face. Oh my god. He crashes when he laughs. So he can't laugh. He can't cry. Quality of life. There you go. So that's why, you know, he wants to do the medical assistance in dying. It's not like imminent or like soon or anything, but it's the direction that he feels like he's heading. It's so terrible that this has been going on and that it's still going on and that you fell into this world. I had never heard of this until the most active and positive and hardworking person in my life was in bed bound for 2 years, you know. So, those were the three darkest

years of our lives. And I would have never thought that you could. It was like rock bottom. It was the darkest time. You have no help and you lose faith in medicine, in the doctors, in society in general. I'm forever appreciative of, you know, the things that I've gotten from his friendship. I want people to know about this disease. I want them to know how bad it can get. Yeah. and why it's so urgent for people to know about the disease and for research to happen. It's no surprise to those of us who do this work that CO has led to a tsunami, a post-infectious fatiguing syndrome which is long CO. There's probably 3 million people in the country in the US with ME/CFS diagnosed. It's huge. There's

probably going to be 30 plus million with long CO. Yeah. She spent about a month crashed. But the thing is that she came out of it and she's doing a lot better now. She's moving around. She's back to walking. She went for a walk outside by herself the other day. That was crazy to me. Like in 2 and 1/2 years. Can I just say it was so funny because I went outside for the walk. I was like, "Okay, bye." And then Kyle's running behind me like trying to catch up. Yeah. Well, I was She just starts going out the door and I'm like, "Oh, you're just going for a walk without even like letting me be a part of this?" Like, you still scare me

around the house sometimes cuz I'm not used to you being up and I'm, you know, coming back out of something that was really awful and prolonged. Yeah. I mean, it's crazy to be completely used to you not being able to leave your bed. And how does that kind of make you feel right now? It's like 5 minutes. Keeping it really slow and chill. I'm totally fine. I don't feel the PEM the next day, which is the bigger deal cuz I'm less worried about how I feel in the moment and how it's going to affect me the next day, which is why this disease is so challenging to navigate. You know, I would sometimes see people like walking and running and it would make me depressed. Like my favorite activities

outside of making videos were like surfing, snowboarding, hiking, running, everything active. And I can't do that now. It's not the same. It feels like I'm way less stuck inside. Like it feels like I'm much more connected to the outside world just being able to like process what I'm seeing outside the window which I couldn't do for months even when I could handle looking out the window. Does that make sense? Yeah. Like I could look out but I couldn't process it which was frustrating and weird and hard. Oh gosh. Birds. Sorry. There's a lot of birds that fly by here and it's so great.