Frustrated with trial-and-error approaches to treating #MECFS #LongCovid #Lyme & other #PAIS illnesses, I made a visual hypothesis of likely mechanisms of dysregulation. To discuss with my physician, but I thought I'd share it here too. Here's a clickable 🖱️ version: patientledhypothesis.github.io

If you can, please join me in supporting Kate! Their story is eerily recognizable. Kate is super kind and knowledgeable. ✌️

Kate Violette@kateviolette.com · last mo.

Hello friends near and far 💜 I've reached the end of my savings, frustratingly, just as we've solved the root mystery of my illness (it's Lyme) and are seeing continued success with treatment. I'm asking for your help in bridging the gap between now and when I can hopefully work full-time again.

Good to see this publication on HBOT for ME/CFS. Congrats to @scheibenbogen.bsky.social & team. I find the normalization of thalamus connectivity so interesting! As a Buddhist with ME/CFS I've noticed HBOT therapy improved proprioception (body awareness, governed by the thalamus) when meditating.

Tens of thousands of dollars of off-label meds & treatment experiments & I’m still mostly bedbound & too sick to work/socialize/do anything but exist & suffer for years on end. No research funding = no validated treatment = millions of young lives rotting away #MEAwarenessDay #GreatestMEdicalScandal

Today, on #LongCovidAwarenessDay I spotted this pamphlet on a real life bulletin board, how retro! It say "Lockdown over? Not for me." as it highlights the continuing struggle of people with #LongCovid - like myself. Link is to a fundraiser for more medical research by www.stichtinglongcovid.nl

Beste @laurensdassen.voltnederland.org & @ineskostic.bsky.social, staan jullie morgen in debat weer op voor alle #PAIS & #LongCovid patiënten? Ik zit thuis met #Lyme & #MEcfs. Met meer geld voor onderzoek & behandeling kan ik hopelijk weer aan de slag als onderzoeker klimaat en circulaire economie 🙏

NietHersteld@niethersteld.bsky.social · 6mo ago

📣🩵 Deel en laat van je horen! Het is bijna zover! Morgen debatteert de Tweede Kamer tussen 19:00-23:00 over #LongCovid, en hopelijk over #PAIS in het algemeen.  Het is belangrijk dat we ons nu uitspreken! 🧵

Clip from an NOS news report about the PAIS protest in The Hague. Wheelchairs symbolised those too ill to attend. Patients with post-infectious illnesses: long COVID, ME/CFS, Lyme, Q-fever and sepsis are calling for proper research and treatment.

Indrukwekkend #paisprotest vandaag voor al die mensen die #niethersteld zijn van bijvoorbeeld long covid, ME/CVS, Lyme, Q-Koorts en andere PAIS. Vandaag kregen de mensen die in stilte lijden een stem. Nu is het aan de politiek om daar naar te luisteren.

If you can, please consider donating to the Open Medicine Foundation this November. Your donation will be trippled 3️⃣✖️! OMF supports some of the most promising research to better understand and treat #MECFS & #LongCovid, which are making the lives of millions of patients deeply miserable. Thank you 🙏

Open Medicine Foundation (OMF)@openmedf.bsky.social · 9mo ago

🌟Triple Giving November is back! From November 1 to December 2, all gifts to OMF will be tripled, up to $500,000, thanks to generous matching donors. 👉 Triple your gift today and learn about other ways to support OMF: ow.ly/6RrM50XlkLk. #pwME #MECFS #pwLC #LongCOVID

Reassuring self-delusion: "participants in all wealth quintiles rated their personal carbon footprint far better than their perception of the carbon footprint of others would suggest. This was particularly striking among participants in the top 20% wealth group." www.nature.com/articles/s41...

The carbon perception gap in actual and ideal carbon footprints across wealth groups

Nature Communications - Survey data from Germany show that, collectively, people acknowledge carbon inequality and favor fairer emission distributions yet individually perceive themselves to...

nature.com

📣 People with Long COVID face an increased risk of housing insecurity. Research shows this trend, which people with the disease have warned for years. Freelance reporter @jloeppky.com reports for @thesicktimes.bsky.social. thesicktimes.org/2025/06/17/l...

Long COVID is increasing housing insecurity, but support programs fail to help - The Sick Times

A growing body of research shows that Long COVID, combined with a lack of government support, leads to financial insecurity and housing instability.

thesicktimes.org

So, yeah... Being chronically ill isn't great, but it sure is expensive! After 10+ years of #Lyme and #MEcfs with years of #LongCovid on top, I realised I'm easily down (€) 200k in lost income and 50k in extra expenses. Could have bought a house, instead I buy supplements.

This is my 9th year advocating for #MyalgicEncephalomyelitis #MillionsMissing #MEAwarenessMonth. My health has only worsened since then (9 years ago I was able to work FT! Now I can't even work PT and am mainly housebound), but I'm hopeful because: (1/6)

New from Germany: Brainstem Reduction and Deformation in the 4th Ventricle Cerebellar Peduncles in Long COVID Patients: Insights into Neuroinflammatory Sequelae and “Broken Bridge Syndrome” www.medrxiv.org/content/10.1... #LongCovid #NeuroPASC 1/

Brainstem Reduction and Deformation in the 4th Ventricle Cerebellar Peduncles in Long COVID Patients: Insights into Neuroinflammatory Sequelae and “Broken Bridge Syndrome”

Post-COVID Syndrome (PCS), also known as Long COVID, is characterized by persistent and often debilitating neurological sequelae, including fatigue, cognitive dysfunction, motor deficits, and autonomi...

medrxiv.org

Mood today. "I was still sick [...]. Feeling something like a cornered animal, I cast about in my mind for some way out of the maze, but could see none. Still my brain responded with a refusal to give in." From 'Lyme with a twist', by Lowell Miller. 📖

NEW: Cuts to Columbia University funding have shuttered a prominent research center into ME/CFS, a debilitating condition with no FDA-approved treatments. It's a gut punch to a community that for years has been frustrated by a lack of funding. Developing... www.statnews.com/2025/03/19/m...

ME/CFS research program shuts down at Columbia after Trump cuts

ME/CFS, which affects millions of Americans, has few dedicated research centers. Now the one at Columbia has been shut down over Trump funding cuts.

statnews.com