Thread by @_ppmv

A. #LongCovidAwarenessDay.

Time for people with LongCovid to speak. Here just one high-level lesson I can add:

Use precise medical language to access care. Demand change from an establishment that hung you out to dry.

Eg, it's SAND, equivalent to HAND in HIV, not 'brain fog'.

https://twitter.com/_ppmv/status/1635991610507898881

B. Beware, few understand SARS viral persistence as cause of LongCovid (etiology). IDK why!

MDs then treat symptoms, not causes. Be sure not to waste time you don't have.

Demand a viral load test. HIV T cell depletion tests can diagnose Long Covid, just as it did for Long SARS.

C. Always teach the relevant scales and dynamics.

65 million patients!?!

That's twice as many as people living with HIV, and you're treated far worse: often gaslit, no POC T cell test, people mostly ignore you.

On the AIDS timeline, we are in the early 1980s.

Read this again.

D. That's why charming little people like me have no qualms about comparing SARS-CoV and HIV even if it makes bigger people who wrote terrible policies over the past three years uncomfortable.

Send this to biomed researchers.

We need $ and good people. mdpi.com/1422-0067/24/3…

E. Even as a climate policy expert, {climate is going badly, icymi}

the state of COVID-19 policymaking and lack of institutionalization stunned me.

1 COVID-19 PHEIC may end soon.
2 No one picked up the UNCOVID idea yet.

SOMETHING like it will be needed.

https://twitter.com/_ppmv/status/1629113097108553730

F. The Lancet has been quite outstanding - various links here with the above caveats.

Overall, science and international cooperation among scientists/labs/volunteers (like me, haha) has been the one bright light in this pandemic.

Enough talk. Good luck!
thelancet.com/journals/lance…

G. What funding?? $5-10 billion *per year* in USA, China, Europe *each* needed for research alone.

What is happening in reality?

Surveillance and genetic sequencing is being dismantled. Community PCR tests - how we see what the virus is doing - a rarity.

https://twitter.com/_ppmv/status/1632770366274674688

H. That's the state of COVID-19 politics as we enter Year Four of a pandemic that (1) should never have gone past summer 2020, had states followed their own pandemic playbooks, as they did for SARS 2003 (see thesis) and H1N1 2009.

https://twitter.com/_ppmv/status/1601311718285922304

I. There should never have been 10,000s of LongCovid patients, even; never mind millions.

Some of these questions are hard. Others, really not.

Happy organizing everyone!

I'll shut up now 🤣

J. COVID-19 (1) should never have gone past summer 2020 and (2) could still end any day by existing law (IHR 2005). We're the only people consistently making this point.

It doesn't show us to be smart; but something to be deeply wrong in current politics.

https://twitter.com/RealCheckMarker/status/1629470503080525825

K. Hope this thread helps or motivates. Always have simple system dynamics diagram in mind, eg sketch by @bethsawin:

Think in such models—they can help and clarify.

Or draw your own. Ending transmission is priority.

Be your own messengers if no one else does it.

Be well, 🖖💁‍♂️