Thread by @loscharlos

🚨Important Announcement!

#TeamClots has just launched an initiative to scale their #MicroClots testing across the globe.

I have a few thoughts on why I think this is one of (if not the) most important next steps for helping #LongCovid patients 1/
kernls.com/projects/diagn…

We're in dire need of a biomarker & diagnostic, and #MicroClots is the most promising to date. So far it has a 100% detection rate in patients & yet to be disproven. Even if it falls short of 100%, it's now clear it's going to be a critical test for all #LongCovid patients. 2/

This initiative will allow @resiapretorius and her team to develop a methodology to replicate the #MicroClots test in any lab in the world. The implications of this **cannot be overstated** 3/

Establishing a #LongCovid biomarker allows:

1. Immediate diagnosis & consideration for therapy. No more (or less) gaslighting.

2. Clear eligibility for benefits.

3. Trials to move forward that are currently log-jammed due to no established biomarkers or "endpoints" 4/

Are #MicroClots the root cause of #LongCovid? We don't know. But if it's not, and it's something like viral persistence that can only be detected in tissue samples, it's clear we'll need a downstream marker, like #MicroClots. 5/

Why do we have to fundraise for the most promising science behind the greatest mass disabling event in human? This was my question. The @NIH is not funding smaller research teams, and worse, the very few trials have started are not expected to be completed for TWO years. 6/

This is an excellent article outlining the problems with the current pace of @NIH research:

“Everybody is frustrated about how slow things are.. It’s maddening they directed this massive amount of funding toward a 4-year-long data collection project.” 7/
statnews.com/2022/03/29/nih…

This is not a lot of money that needs to be raised, & funding this allows us to expedite #LongCovid progress by years. 

And I REALLY hope the #MedTwitter community - who treated us & took a lot of our 💸 to no major avail - finds it in themselves to give a little back here.. 8/

This is the first time I can recall #LongCovid patients have the opportunity to DO something about our illness (besides rage tweet & arbitrarily contact senators with no real coordination about bills we have no idea what their status or substance is, which we should still do!) 9/

Since I've been sick, I've had loved ones & friends ask over & over: What can I do to help #LongCovid? How can I be an advocate? I haven't a good answer besides "Warn your friends & fam" or " help my caretaker". Today I’m going back and saying "donate what you can." 10/

It’s safe to assume at least a cohort (if not more) #LongCovid pts have #MicroClots, how much longer can we wait for treatment before permanent damage is done? This is a grave concern of #TeamClots - the longer any thrombosis event goes untreated, the harder it is to treat. 11/

If you're in a position to give, I really think you should - but if you're not, I really encourage you to share with your friends & family. They care about you & they want to help you. This is REAL opportunity for them to do that. 12/

It’s unlikely ANY biomarker will be 100% reliable for all #LongCovid pts, but we need to stop pontificating about silver bullets & start chopping every fruit off every branch. Funding this does not establish #MicroClots as the sole biomarker or stop other research. 13/

Moving this research forward will also allow others suffering from post viral & chronic conditions (ME / Dysautonomia / Lyme) to access these diagnostics. This research will help open new doors for all those still looking for answers. 14/

This initiative is led by two of the most inspiring & brilliant #LongCovid researchers, and we're so lucky to have them. @microbeminded2 & @resiapretorius 

Here’s a clip from the full video on the website outlining the scope and goal of the project. 15/

So I encourage you all to donate & share - and definitely sign up as a ‘champion’ if you’re feeling like you really wanna gunsling this thing 😵‍💫🙏 #LongCovid 16/ kernls.com/projects/diagn…

Special thanks to @HarryLeeming @doctorasadkhan & @microbeminded2 for helping organize.

@LongCovidAdvoc @LongCovidSOS @itsbodypolitic @C19LH_Advocacy @long_covid @elisaperego78 @calirunnerdoc @ahandvanish @Survivor_Corps @GenePark @ravenscimaven @luckytran @dbkell @kdurquiza

@WesElyMD @theheatherhogan @LC_UK_Action @Bodalicious1 @LongCOVIDPhysio @DrPanMD @RaviHVJ @jencurtinmd @PeoplesCDC @zalaly @dianaberrent @fi_lowenstein @brianvastag @maosbot @meghanor @Dr2NisreenAlwan @PutrinoLab @LekshmiMD @MVGutierrezMD @sunsopeningband @NanetteAsimov

LASTLY - here's some info on the #MicroClots research in #LongCovid:

Research summary: portlandpress.com/biochemj/artic…

NPR interview: npr.org/2022/01/09/107…