Thread by @ECooperAuthor

On my 2 year Covid anniversary, a thread about my experience with #LongCovid and what I've learned about post-viral illnesses like #MECFS. This is me just before I caught Covid 3/20. I'd just hiked 10 miles and was having a blast. I was celebrating publishing my 3rd book. 1/

At the time I was in great shape, hiking and running regularly, working on my next book, being a very active mom, contemplating going back to do some university teaching. About a month after that photos was taken, I thought I had allergies. I felt a little tired. 2/

I knew Covid was coming but, as far as I knew, it wasn't really in the states yet. But then, a week later, I had trouble breathing and my doctor confirmed that I had Covid. I was one of the very first cases in the US. Yay me! 3/

Other than a week where I struggled to breathe and some rashes, I never got that sick. I was reassured that, as a young healthy person, I would bounce back in a week and be fine. For a few weeks I thought I was improving but then a strange round robin of symptoms began. 4/

New rashes, tremors, seizures, tachycardia, auditory hallucinations, headaches, vertigo, a swelling throat, and fatigue that left me bed bound. I couldn't think or write. This is me in the hospital as doctors new to #LongCovid struggled to understand what was happening to me. 5/

As a bewildering array of symptoms progressed, I found that most doctors seemed unable to understand why I was still sick, in fact I was getting worse. By the 3rd month, I was bed bound, unable to talk. My partner had to feed me. If I got out of bed for more than 10 minutes..6/

I would crash and be unable to lift my arms or head for days. I couldn't wash myself. I couldn't take care of my child. For almost a year I was fully bed bound. I was lucky to find a wonderful primary care Dr who knew exactly what I had.

I had a post-viral illness. 7/

It turns out that Polio, Sars CoV1, Epstein Barr, Herpes, the flu, and many other viruses are well known to cause long term, severe illnesses. For example, we now know that Multiple Sclerosis is caused by a previous infection with Epstein Barr. 8/

Post-polio syndrome is a debilitating, long term disease that can appear decades after an initial polio infection. The long term health impact of SARS CoV 1 is also well documented. And of course, there is Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis. #MECFS

I remember hearing about ME/CFS in the 90s when it was disparagingly called the "Yuppie Flu" and there was a lot of public snickering about it. I didn't know that the general public disbelief about ME/CFS extended to doctors treating the people whose lives were destroyed. 10/

Despite the vast literature documenting the severity of post-viral illnesses, because there wasn't a simple medical test for ME/CFS, doctors dismissed millions of sick people as "invested in being sick" and insisted that it was all in their heads. 11/

For decades, ME/CFS was dismissed as "functional" (a code word basically meaning psychological). Thanks to some pioneering medical research, now know that ME/CFS is a medical disease involving energy production though the details are still not known. 12/

Based on my symptoms, my doctor knew I had ME/CFS. Since then I have also been diagnosed with POTS and Small Fiber Neuropathy. Here is am at Stanford getting tested for autonomic dysfunction (hint, I have it now). #POTS #LongCovid #MECFS 13/

Although I have improved somewhat, I still can't stand for more than a few minutes. When I do stand, my heart rate goes up above 150 and my brain gets about 65% of the blood it is supposed to. I'm mostly home bound, able to do one small outing a day when necessary. 14/

Before Covid I took a daily multivitamin. Now I take 4 medications and 8 supplements every day. 2 years later I still have tremors, rashes, crushing fatigue, nerve pain, and a swelling throat. 15/

Fortunately my neurologist has helped me find medication for my intense brain fog and I'm able to write again. Although I've seen some amazing doctors, I have also encountered many who still scoff at the idea that Long Covid is even real. 16/

I had an ENT and a cardiologist "explain" to me on separate occasions that Covid only really effects the lungs and that my symptoms couldn't possibly be from a respiratory virus. 17/

Obviously we know that isn't true as an avalanche of research shows the horrific vascular, cardiac, and neurological outcomes of Covid. I've been incredibly lucky to have support from my family and a small group of wonderful doctors. 18/

Please mask and get vaccinated to avoid joining those of us with post viral illnesses. Please support funding and treatments for Long Covid and all post viral illnesses. #TreatLongCovid #TreatMECFS

PS I apologize to my agent and editor for all the typos in this thread. 😂

Wow, I’m overwhelmed by the response to this thread. Thank you all for the well wishes and for retweeting! A lot of people are asking about my meds. I’m working on a thread now with details.

I've gotten a lot of requests for more info about my treatment so I wrote a thread.

https://twitter.com/ECooperAuthor/status/1503484574520672258?s=20&t=ar9g6m8WJzVMS77zUPBaDA