Harriet Carroll: Long Covid Scientific Consultancy I realised this a while ago. Our format of medicine doesn’t work on prevention, it’s based on waiting until people are severely ill, and only treating them then. People don’t go from healthy to unhealthy overnight for most things, there’s a years long tail where they’re not right

🧵Last week, Dr. Lael Yonker's study using larazotide to treat gut permeability was published. This study was conducted on children with MISC from COVID-19. The study showed that the Larazotide helped clear lingering spike protein from the blood more quickly, eased gut symptoms

#Care4Complex

👀

Is there any point in me sending emails to local rheumatologists or neurologists to plead for help? My experience is that they NEVER break ranks with their colleagues, no matter how egregious their mistakes. And it’s a “small” city, they all know each other, and would rather let

It's so aggravating when people say "be the squeaky wheel". Husband and I have been making countless phone calls/sending messages for weeks. We always have to. I'm very ill, just trying to hang on, but it's always on the patient to try to keep everything in motion #PriorAuthHell

Awesome. Another way for doctors to discriminate against severely ill complex patients. “IVIG addiction” my ass. I’ve got another new somatoform condition to invent out of thin air: “Reddit psychosis medical discrimination syndrome.” How do you like the sound of that, you

#NeuroSjogrens #MedicalNeglect x.com/arianek/status…

It’s just one BC ER Closure after another this long weekend. Where are our elected officials or are they on a permanent holiday? #BCHealthcareCrisis

Canadians have been told that getting regularly infected with SARS-CoV-2 is beneficial to their immune system because it is Kind™ and Mild™ and hybrid immunity is the best kind of immunity. It isn't, of course, but that's what Her Kindness™ says (or did, before disappearing).

🔥 This is the way. #Care4Complex

The public transport ride share driver who picked me up a few minutes ago was wearing a N95. He told me he stopped masking because he hated being the only person doing it. Then he got C19 2X and has been masking ever since. Public health has failed us politically and ethically.

💯💯💯

“If it’s really that bad just go to the ER” is not the helpful comment you think it is. Yes it is that bad. But if we went to the ER every time our symptoms flared, we would literally live there. That’s chronic illness. We have to learn to tolerate the intolerable.

👀👀👀

For those who think "just a cold, any cold" viruses are no big thing, please read this thread. Maybe, just maybe, viral infections should be taken a little more seriously. Big thanks to the thoughtful, brilliant and humble Conor Browne

Has anyone been able to find Larazotide in Canada or the US that doesn’t have Quercetin in it?

Leslie Kasza Conor Browne That’s how my whole illness started too. A severe GI infection on a family trip to Calgary when I was 7. I was never the same again. Every bad respiratory and GI infection just made things worse and worse until I turned 30 and it morphed into this autoimmune monstrosity. No

Got POTS? Tired of trying to drink your way to a normal body fluid volume? It would be great if researchers would learn how to patch the leaks in your bucket. Ddavp/desmopressin/fludrocortisone can help some ppl somewhat, but not all. #PatchTheLeaks #Dysautonomia

Do you ever just sit back and marvel at how so few of the people in power actually seem to understand wtf is going on, or how to improve things? 🙃