Thread by @jenbrea

I am going to write something that will be difficult to understand unless you have been unable to work, severely incapacitated, homebound, or bedridden due to a viral infection for 1-40 years. #MECFS

We (#pwme) are VERY scared for #COVID19 patients who develop chronic symptoms, and have been talking about it since January. We want nothing more than to help spare them our fate.

Yet––it is HEARTBREAKING to see some of the intense outpouring of compassion from doctors for these patients, the proactive (and appropriate) scientific curiosity.

WHERE HAVE YOU BEEN

If you had been there BACK THEN, imagine how much more we might do for these #COVID19 patients RIGHT NOW.

Every single natural phenomenon deserves study. Failing to study #MECFS is a choice to remain ignorant about FUNDAMENTAL BIOLOGICAL PROCESSES that can prevent or cure disease. It is a choice to fail to have the answers when we need them most.

We’ve known about the Wuhan outbreak since December 2019 and did not act. We’ve known about post-viral sequelae of the kind people around the world are now experiencing due to #COVID19 since at least 1934, 1955, and 1984–and did not act.

So fine, you’re arriving at the party late. The most important thing now is DO NOT REINVENT THE WHEEL. Acquaint yourself with the published literature of both #MECFS and long-term sequelae of discrete outbreaks (e.g., SARS, Q Fever, Ross River Virus, West Nile, H1N1).

Talk to some #MECFS researchers. Talk also to #POTS, #MCAS, and maybe even #EDS researchers. Read the published literature on diagnostic instruments for each of these conditions. THEN design your study.

Help us learn how prolonged #COVID19 recovery is different (or similar) to DIAGNOSES WE ALREADY HAVE. Then you’ll help not only the millions of #COVID19 patients yet to fall ill, you’ll help the millions of us who have been here ALL ALONG.

To doctors and researchers: this IS a novel virus. There IS good reason to study prolonged recovery/chronic symptoms following #COVID19 infection as a novel entity.

But there are equally good reasons not to.

What we observe may not be wholly new. The #MECFS-like symptoms #COVID19 patients report could be damage caused by an inappropriate immune response, “set off” by different infections, of which #COVID19 is just the latest. New infection: same old mayhem

https://twitter.com/jenbrea/status/1260614306334269440?s=21

https://twitter.com/jenbrea/status/1260614306334269440

We know that #COVID19 can cause myocarditis and Guillain-Barré syndrome. Perhaps it can cause another old syndrome: #MECFS. Below, a frequency table of symptoms observed by Melvin Ramsay, a physician during a 1955 outbreak of an #MECFS-causing virus that was never identified.

So again, please do the work and help us understand whether what long-term/chronic/prolonged recovery #COVID19 patients are experiencing is truly NEW or actually VERY OLD.

Otherwise, you might make a mistake akin to thinking you were the first person to discover myocarditis, which...wouldn’t be all that helpful to anyone.