Thread by @maosbot

My views on covid seem to have become a bit, well—radical. Please allow me to explain. I did not start out radical. I am lucky to have a settled, establishment-adjacent, career. Three years ago, on the eve of the pandemic, I trusted the establishment.

I trusted the establishment when it said that there was ~no covid in Oxford in Mar 20. Then our little family all got it. I trusted the establishment when it said that, because we were healthy, we'd be fine. I trusted the establishment when it said kids don't get sick

Our 12 month old developed a fever (40.1 degrees) for three weeks, aside from one day—when, over a few hours, our baby's temperature dropped like a stone, into hypothermia, like that little body was just shutting down. And we still don't know about the long-term consequences.

My wife and I also got very sick. My wife was still very sick as an ambulance was taking me off to A&E, after I had collapsed, shaking. Having no nearby family, we emailed strangers to see if anyone could take our children if we both ended up in hospital.

Luckily, we managed to get by on our own, our health seeming to improve. But then the relapses came—symptoms would return, accompanied by new ones, terrifyingly. I trusted the doctors, who said I would recover—they said it would take days, then said weeks, then said months.

And yet, I wasn't getting better—I was getting sicker. A year after infection, I was more sick than I had ever been, lacking the energy to leave the house. Formerly, I was a competitive marathon runner, but I brought on a bad relapse with a 700m walk.

https://twitter.com/maosbot/status/1450465063056420874?s=20

The only test one doctor gave me was a depression screening (I was not depressed); another doctor said that my heart rate exceeding 200bpm during a short walk must have been due to my Garmin malfunctioning (the doctor didn't even consider the vascular impacts of covid).

I begin to see replies from folk with ME/CFS, folks who had caught a virus, suffered symptoms like mine—and had never recovered. I learned that, before the pandemic, 17-24 million globally suffered from ME/CFS, with lower quality-of-life scores than with end-stage renal disease.

A quarter have severe ME/CFS, which often means they are bed-bound, intolerant of sensory stimulation and dependent on others for care. Recovery is rare.

Worse, the establishment has underfunded ME/CFS research—relative to disease burden, ME/CFS is the NIH's least-funded disease. Treatment is often more harmful than helpful (e.g. the PACE trial), and fewer than a third of medical schools even include ME/CFS in their curriculum.

Why did it take sick strangers on Twitter to teach me about ME/CFS? Why was there no public warning? Twitter also taught me a name for my own illness: #LongCovid. But beyond my personal experiences and other anecdotes—how do I know that Long Covid is a serious problem?

Firstly, the scientific literature has established the biomedical basis of Long Covid—more than 200 horrific symptoms result from impacts on almost all organ systems. About half of those with Long Covid are estimated to have ME/CFS.

Long Covid is BAD.

https://twitter.com/ahandvanish/status/1613975176005156864?s=20

Secondly, studies have established the alarmingly high prevalence of Long Covid—about one in every hundred people in the UK has been **sick for over two years**. Neither vaccination nor prior infection stop Long Covid,

Long Covid is NOT RARE.

https://twitter.com/ONS/status/1621079005762838528?s=20

The establishment is failing in:

1. STILL providing no public warning about Long Covid, ME/CFS and related
2. STILL offering zero treatments
3. STILL not promoting low-cost protections—respirators, air purifiers—to help prevent more suffering

How could I NOT become radical?

Today, Mar 15th, is #LongCovidAwarenessDay. Please amplify Long Covid voices.

https://twitter.com/maosbot/status/1635905917811302400

# References

* 17-24 million globally—me-pedia.org/wiki/Prevalenc…
* low quality-of-life scores—doi.org/10.1371/journa…
* recovery is rare—doi.org/10.1093/occmed…

* ME/CFS underfunded—doi.org/10.3233/wor-20…
* PACE trial—me-pedia.org/wiki/PACE_trial
* medical schools not including ME/CFS in their curriculum—doi.org/10.17226/19012