Thrilled to share my first "deep dive" research post for my newsletter on microclots in #longCOVID! Please check it out to learn more about the science behind this really important topic and consider subscribing if you want more of these posts! #teamclots

Feels like a fitting time to play #Cyberpunk2077 for the first time, right? 😅

Due to the poor air quality and purifier shortages in Southern California right now, we're opening our CA warehouse doors so people can get clean air gear as quickly as possible. Order online with the 20% off code "WAREHOUSE" for in-person pick up on Saturday, Jan 11. ☁️

Hey folks! After a much-needed social media hiatus I'm working to migrate over to the other place. The COVID-conscious and disability communities are growing rapidly over there and the atmosphere is SO much better. Same handle, I hope you can join us!

Researchers are feeling uneasy about the prospect of NIH budget cuts and politicization of science

MUTUAL AID REQUEST: A friend with #LongCovid is losing his housing and has been unable to access any local support services due to systemic barriers (such as ableist work requirements). Let's help him avoid staying in a shelter that further risks his health and safety. #pwLC

All of this to say - always, always check your medical records after your appointments, especially when seeing someone new. If you can without jeopardizing care, ask them to correct any issues. If they refuse, ask them to document the refusal in your chart. I'm tired, yall. 😥

Unfortunately, you can't medicate or CBT your way out of systemic oppression and discrimination. This approach blames the individual for systems-level failures that we have no control over. Psychiatry does not have a good framework to navigate these complex issues.

This is the kind of stigma that patients with complex chronic illnesses face when trying to seek care! Being sick & disabled is extremely stressful and traumatizing, yet doctors are quick to dismiss this as "mental health issues" to be fixed with meds and therapy.

I need to see a psychiatrist indefinitely to prescribe my ADHD meds. When I establish care I make it clear that I'm mainly there for ADHD med management. Yet I invariably leave the clinic with another mood disorder dx that I never endorsed and do not meet diagnostic criteria for

Just found out my new psychiatrist who is supposed to specialize in chronic illness still recorded my primary diagnosis as "major depressive disorder" The referral clearly states I have no mental health concerns & just need med management. I also don't meet DSM-V MDD criteria!!

Last week Dianna Cowern participated in an 11 hour livestream to raise money and awareness for #LongCovid. Dianna has suffered with long covid for 2 years - she is completely bedbound and totally unable to care for herself. This is her husband Kyle, writing on her behalf.

The NIH group should take note - this is a great example of proper participant selection to control for the effects of reduced activity levels, something the intramural Deep Phenotyping study failed to implement.

Largest 2-day CPET study to date replicates the objective decline in performance measures on day 2 for ME participants (Canadian Consensus Criteria) versus sedentary controls matched for aerobic capacity. It's. Not. Deconditioning. #MECFS

Super interesting paper with big implications for my fellow migraine sufferers! Very cool techniques too - using implanted GRIN lens to measure calcium signaling in peripheral ganglia. CSF as a form of volume transmission is 🤯

Science Alert: COVID's Hidden Toll: Full-Body Scans Reveal Long-Term Immune Effects “..compelling evidence that long COVID is tied to the persistence of the SARS-CoV-2 virus in the body and abnormal immune activity” https://t.co/XPsalHvCIi

Science: “Tissue-based T cell activation and viral RNA persist for up to 2 years after SARS-CoV-2 infection” https://t.co/6o0Y3fV1rd

We are live-streaming a full day of Dianna’s life, sharing what it’s like for someone suffering from severe MECFS. We will also be raising money for @OpenMedF to support research and clinical trials for #LongCovid and #MECFS Time: Saturday, July 6th 2024, from 6:45 AM to 6:00

It isn’t that yet another drug trial in Long Covid showed negative results. It’s that yet another drug trial in Long Covid wasn’t adequately designed to show positive results. Lather. Rinse. Repeat.

Here's your semi-regular reminder that the PROMIS fatigue scale is not validated for use in Long Covid but yet it's the primary endpoint in expensive trials everyone has put a lot of hoping into. Here's your other semi-regular reminder that PEM/PENE isn't just fatigue.

This means dedicated a significant chunk of funding to basic, mechanistic research. Right now, our drug trials are like throwing darts in the dark - you might get a lucky bullseye eventually, but if you want to maximize your chances of winning you need to turn on the lights.