Attention all-exciting news! 🌟We heard your feedback! We've made some changes to make our CURE ID #LongCovid case report form faster, smoother and more user-friendly. Share your treatment experience today!
#LongCovid Awareness

Preventing infection is the best way to avoid diseases like #PAIS . A new study from our team Tianyang Mao, Jooyoung Kim, Mario Peña-Hernández 🦇 et al shows that a generic antibiotic neomycin acts on the host immune system in the👃🏽to trigger antiviral resistance. (1/)🧵

Since Daniel Lewis (but with Long COVID) isn’t hosting a space today, I’m stealing his time slot 😈

Drop by and chat all things #LongCovid .

twitter.com/i/spaces/1dRKZ…

Today, we’re launching a new in-app research study into reinfections with Patient-Led Research Collaborative🚀

It’s been widely reported by people with #LongCovid & #MECFS that infections can have a significant impact on long-term symptoms

With your help, we can better understand this phenomenon 🧵

CL Daniel Lewis (but with Long COVID) Walking and talking long enough releases enough histamine to flare my MCAS (which then flares my dystonia and POTS, among other issues) — if I know I’m going to do either I’ll take extra MCAS meds before/after plus extra Salt Stick Vitassium and dystonia med

Daniel Lewis (but with Long COVID) I think that exertion triggers my MCAS too, despite eliminating dietary triggers and taking 6 meds… I recently tried a short walk for the first time since getting LC and had difficulty breathing, chest pressure, etc but the kicker was that my face swelled up the same way it does

Pacing to avoid PEM is almost never limited by behavior. It's limited by having far less available energy for activities of daily living.

It's like living on $1 per day. Then $10. Then -$3.50. Then maybe a lucky $25. Then -$13.

It's rarely realistic without help.

There is no need for therapists here. Or coaches. Or programs. The problem is not budgeting, it's insufficient funds.

There is no effective strategy either. No such thing exists. This is frustrating but refusing to take reality into account helps no one.

Looks like a lot of folks have MCAS reactions that last longer than I realized they could

We are grateful for Bernie Sanders leadership on #LongCovid . We enthusiastically support his Moonshot proposal, which we believe will greatly benefit the millions suffering with this condition.

We just sent his team our feedback, and wanted to share our thoughts with you all.

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I dont think #POTS experts realise how all-consuming the first line treatments can be:

🚰Drink loads of water...that you can't retain because part of POTS is water-retaining endocrine dysfunction (and going to toilet every 30 minutes with orthostatic intolerance is a breeze 🙄)

🧦Wear compression garments...which are ridiculously hard to put on (especially in those with energy limiting comorbidities like ME), and are incredibly uncomfortable, especially in the heat when you need them most

This 'would require airlines to promptly repair or replace damaged wheelchairs, provide loaner wheelchairs while passengers are waiting for the repair or replacement and provide enhanced training to workers who assist passengers with mobility disabilities'
votervoice.net/mobile/USPF/Ca…

Kelly I wish there was a way to phenotype us or something so that there was a way to help people narrow down their options. And not only that, but we need trials specifically for MCAS so that we can get insurance to cover therapies that are currently off-label.

'Your favorite performer could get #LongCovid and have to shelve their entire career for an unknown amount of time. The model we have been using isn’t sustainable, thoughtful, based on fact, or safe.” — Teen Vogue teenvogue.com/story/clean-ai…

How long do your MCAS reactions last?