I’ve been hearing from a few viewers and patrons asking if I could comment on the situation currently faced by a fellow science YouTuber, Dianna Cowern, aka Physics Girl. Cowern contracted COVID last year, recovered, and then was struck with long COVID. Her friends and family have reached out publicly to ask for help, explaining that her condition is now so bad that she is bedridden and has been hospitalized several times. The questions and comments I’ve heard from you guys have ranged from “holy crap this is terrible, how can we help” to “…but is this even real? Can that really happen?” So I thought it would be good to talk about what’s going on.
Second, let me go ahead and answer those main questions I’ve been hearing: you can help her by watching her videos and signing up for her Patreon. She’s unable to make money in this state, so that income will help.
And yes, unfortunately, it is real and this can really happen.
We’ve been hearing more and more about long COVID, starting even back in the summer of 2020 when Ed Yong highlighted the stories of “long-haulers.” In the three years since, we’ve seen more and more people showing symptoms of the disease: extreme fatigue that gets worse after any exertion, fevers, shortness of breath, cough, heart palpitations, anxiety, joint pain, diarrhea – basically just a full-body shit show.
And of course that’s the sort of general list of problems that lead to skepticism, in both the general public and in the medical field, that the people presenting with these symptoms aren’t just, well, making it all up. Long COVID, like Bell’s Palsy and schizophrenia, are diagnosed by exclusion. That means that there is no easy blood test that pops out a little card that says “Long COVID” – instead, doctors have to do tests that rule out other diseases, until the only option left is long COVID. That leads a lot of people, including experts, to suggest that those are just the symptoms of life, and that the patient just needs to go to therapy and get some exercise and they’ll be right as rain.
In fact, that’s exactly how doctors treated patients with chronic fatigue syndrome from the 1980s all the way up until 2018. Myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, is diagnosed by someone meeting several criteria: lowered ability to do normal activities, a “crash” in energy following physical or mental exertion, sleep issues, the “brain fog” of mental confusion, and lightheadedness or dizziness when sitting or standing up. It is often reported following a viral infection, like “I got a bad flu and just never got better.”
In 1989, the UK’s National Institute for Health and Care Excellence determined that patients with ME/CFS were just out of shape and depressed after being sick, so the treatment was graded exercise therapy (GET) and cognitive behavioral therapy (CBT) – exercise and therapy. It wasn’t until 2018 that they reversed course, admitting that actually exercise tended to make a lot of people with ME/CFS way worse.
That finally allowed researchers to study therapies that actually might work, though the disease was still seen as somewhat obscure and not exactly a funding magnet. That is, until a pandemic hit. You see, ME/CFS seems to be triggered by a number of different illnesses, and sometimes the patient has no idea what illness they had that triggered it. But thanks to COVID-19, hundreds of millions of people have evidence that they were infected by a pretty nasty virus, and it seems that about 10% of them end up with lingering symptoms that are considered to be long COVID. More and more of those long COVID cases, including Dianna Cowern’s are now being diagnosed as ME/CFS.
That is horrifically tragic, but the silver lining is that all those people who have been suffering with ME/CFS for years in the shadows are now seeing money pouring into research that might finally help them. For instance, back in August, one biotech company announced successful phase 2 trials of an amino acid cocktail that helped ameliorate fatigue.
Unfortunately, decades of inaction on ME/CFS means that there’s still a very long way to go. And in the meanwhile, as we declare the pandemic “over” and decide that humanity just has to live with rolling the dice on every new COVID infection, we’re going to see more and more stories like Cowern’s. In fact, just before I filmed this video, I learned that ANOTHER prominent online nerd, Anthony Carboni, has also been diagnosed with ME/CFS following a previous COVID infection and then long COVID diagnosis. He wrote on Instagram, “All of a sudden, my life is entirely about managing pain and energy levels. Some days I sleep 16 hours because of exhaustion. Some days I don’t sleep at all because it feels like my body is pulling itself apart. I write down everything that happens because my short term memory is shot. I spend about an hour a day soaking in a tub to take stress off my joints.”
Researchers note that there is no single timeline for the disease: it could persist indefinitely, it could improve, or it could be worse, which is what happened to Cowern. Her friends and family write that she is almost completely bedbound, overly stimulated by lights and sounds (a commonly reported symptom of the disease), unable to hold conversations or even manage her own care. When you compare that to her bubbly, vivacious personality prior to COVID, the difference is horrifying.
Even though we’re talking more and more about long COVID, I think a lot of people think of it like a lingering cold. Some headaches, some reduced activity levels, but you can still live your life, right? But unfortunately, for a growing number of people, the answer is no, you can’t still live your life. Even I was shocked at the photos and videos showing Cowern’s current state, but while researching this disease I learned that her story isn’t unique. ME/CFS can be absolutely debilitating. The “crashes” can completely sap the patients’ ability to lift a finger. The brain fog can make it impossible to hold a thought for more than a moment. The sound of a person’s voice can cause a headache that lasts for hours.
So I’m sorry to report that while I understand the skepticism, ME/CFS is a real disease with real, scientifically established biological underpinnings, and with real, sometimes disastrous impacts on people’s lives. And there is ample evidence to suggest that it can be triggered by a single COVID-19 infection.
Does that make you nervous? It should. I’m not saying you should be hiding under your bed over the idea of contracting this, but you should be angry that our lawmakers and our healthcare authorities think that this is an outcome that is an acceptable risk of, say, not wearing masks in public places or getting booster vaccines every six months instead of every year.
Look out for yourself and your loved ones, and please go check out Dianna’s channel and her Patreon if you’d like to learn more and throw her a bit of support. I hope that one day soon she will be able to get back to her former self.