We're on a mission to accelerate the discovery of new treatments and cures for #LongCovid, #MECFS, and beyond.
Mar 22, 2023 • 13 tweets • 6 min read
Sharing out some results from our ai-powered #LongCovid site:
* Most popular
* Most effective overall
* Most effective for POTS, Fatigue, Brain Fog, and more
These results are *directional*, but in the spirit of empowering patients with more information, we wanted to share.
🧵
1/ Sources
* Twitter
* Reddit: 2 LC subs, plus r/cfs, r/pots, r/mcas, r/eds, and r/dysautonomia
We collected >35k treatment reports, and read them w/ an AI model to (imperfectly) see if people improved/worsened.
We show all raw data and inferences in case you want to vet!
#nattokinase and #serrapeptase are supplements help break them down. They've provided relief to many, and are available today.
How do they work, and how do you get started? 🧵
1/ How do they work?
@resiapretorius's work identifying #MicroClots in #LongCovid patients was groundbreaking. These clots are different from stroke-causing clots, but could still be causing major issues.
Antihistamines should be near the top of your list of things to try for #LongCovid.
Yes, allergy and heartburn medication have provided *substantial* relief for many.
How does it work, and how do you get started? 🧵
1/ How does it work?
Histamine is in all of us, and plays a role in:
- Regulating sleep-wake cycles, temperature, and blood pressure
- Stimulating production of mucus and gastric acid
- Inflammation
It's in food, and it's also produced by your body. Too much is bad.
Two giants of immunobiology and neuroscience, @virusesimmunity and @michelle_monje, just published a preprint that reviews the latest.
Here’s what you need to know 👇
First, it appears that multiple mechanisms conspire to cause Long Covid, and any given case might have its own particular combination.
Researchers are racing to confirm these mechanisms, so we can start working on cures.
It's invaluable to know how your condition is changing and if new treatments are helping.
But after talking to over 200 patients, almost nobody sticks with it.
Here’s how we could do better 🧵
1/ They don't actually help you get better 🤷
Symptom tracking should help you get better. If the tool isn’t providing insight into how treatments are impacting you and how you can get better, of course you’ll eventually stop using it.
Sep 30, 2022 • 14 tweets • 6 min read
🌬 Breathwork is a not-so-hidden secret within the #LongCovid and #MECFS community, and has been described as “game-changing” and “the number 1 intervention I’ve tried”.
But how could it possibly be so helpful? How does it work? Let’s dive in.
1/ How does it work?
First off, this is not just “thinking your symptoms away”. It creates substantial changes to your physiology that can counteract some of the harm caused by Long Covid.
Sep 21, 2022 • 13 tweets • 9 min read
The twittersphere for #LongCovid and #MECFS is an information goldmine, but to get it you need to follow the right people.
Here are the top 9 accounts you should be following to stay up to speed with the latest. 👇
1/ @PutrinoLab
David Putrino runs a research group at Mt. Sinai, is a fierce patient advocate and a great science communicator. He makes sure patients are informed and involved in the latest research.
