For starters, @US_FDA needs to be made aware how many meds, supplements, and treatment protocols we have tried with little/no improvement. For starters, at the very least, they absolutely must address #Dysautonomia and exertion intolerance as roadblocks to PT/rehabilitation. /2
Second, we need help NOW. While drugs are being developed, let's talk about urgent repurposing of bold pharmaceutical interventions like antivirals, immunotherapies, monoclonals, etc. Let's begin a list of existing drugs we want made available for immediate use in the replies. /3
Immunotherapies like Ampligen, Temelimab, Efgartigimod, CAR-T...etc. would be a great place to start. Those who are more well-versed in antivirals and monoclonals please feel free to add to the replies. /4
Third, we need government funded and endorsed drug production and clinical trials ASAP. They should start with #BCOO7 and go from there. If we can get emergency approval and mass dissemination of vaccines in a matter of months, we can implement a #LongCovidWarpSpeed program. /5
Finally, tell them to stop gatekeeping clinical trials. They can start by removing the requirement to produce a positive PCR to participate. Make the trials and pharmaceutical interventions easily available to patients and their clinical providers. /6
Please chime in with names of drugs to be repurposed or trialed in the replies. It's what I call a Twitter brainstorming session. Try to include drugs that are not currently available or accessible. /7
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🧵Even before being disabled with #LongCovid I’ve had a real problem with people joining the zombie hoard, ditching masking, and engaging in-person for everything like it’s 2019. But being #NotRecovered it just feels more like a slap in the face when it’s my so-called friends. /1
I find it offensive when family and friends, knowing how I got this way, why I got this way, drop their masks, send their kids to school, go out to concerts, parties, etc. not to mention the audacity of blathering on about it to me. It tells me they don’t believe me. /2
When I try to explain how they are unnecessarily exposing themselves to COVID they can’t help but repeat like robots all the typical propaganda points.
✅ “Well, life must go on.”
Guess what? You’re life won’t go on for long with those repeated infections. /3
The few times a day I climb our tiny staircase, when finally upstairs, I'm gasping for breath, my chest cavity sore and tight, and my lungs feel unable to fill or empty completely. This lasts for hours.
"Exercise" for me is climbing a small flight of stairs out of necessity or walking from one room to another. When I do this too many times, imagine feeling like your head is spinning, your chest is seizing up, and you can't catch your breath. /2
For those still suspending disbelief about #LongCovid I challenge you to try to remain upright and functional for five minutes while feeling like you are experiencing a cardiac event. /3