Thread by @loscharlos

Wrote a piece in @statnews today with @julialmv

It’s been almost 5 years since me & millions had our lives destroyed by #LongCovid — & still no approved treatments.

Many of us are fighting for our lives to get access to off-label meds for some relief.

Where is the help? 🧵

The burden of researching & trialing potential treatments for #LongCovid has been left almost entirely on patients.

This is a disastrous public health crisis & we need medical providers to step up — & US Gov to provide guidance on the evidence to date. 2/
statnews.com/2024/10/24/lon…

I’m not convinced any meds on market will be a cure, or everyone will benefit from something — but we know there are many treatments #LongCovid pts have benefited from, sometimes significantly — but more often than not, these are pts paying exuberant private fees for access. 3/

This should not distract us from pushing for a warp speed effort on finding a cure & investing in @LCMoonshot for proper research & clinical trials. However — at current pace we’re going, this could mean many years, & patients are losing their jobs, homes & livelihood today. 4/

It’s incredibly tedious & demoralizing trialing a list of dozens of drugs that may or may not work — but finding a drug that works may mean the difference of being able to hold on until we find a cure — & all patients deserve access to try promising meds w/ medical guidance. 5/

There is enough robust evidence from both IACC literature & LC case studies for @HHSGov to provide preliminary guidelines for treatment considerations for #LongCovid. I believe we could shore up QOL significantly in patient community if we got drugs to right patients today. 6/

Lastly, 1 in 5 prescriptions already written for off-label use, this is not a blasphemous ask of #MedTwitter —what we’re asking should be table stakes: read #LongCovid & IACC research, share list of potential meds, share risk/ben — let us decide. Keep working w the patient. /end