Austin Robert

always tired | analyst | turning on the lights to the connection between #longcovid #mecfs #pots #mcas and connective tissue disorder related conditions #eds 💡

[Austin Robert @ar_pnw]

Dr. David Kaufman follows up to Dr. Ruhoy’s discussion on connective tissue damage via inflammation.

“You don’t need EDS to end up with the same connective tissue disorders we’re seeing such as craniocervical instability … it’s all about inflammation”
#longcovid #mecfs #mcas

[Austin Robert @ar_pnw]

IMO, this snip is one of the most important parts of the round table.

#mecfs #longcovid #eds patients NEED more research into #mcas and its impact on connective tissue

[Jeannie Di Bon @jdibon]

The problem we have as patients is that too often, EDS gets overlooked or reduced to “just hypermobility.” This misses the bigger picture and leaves patients without answers & help.

EDS isn’t just about being flexible or “double-jointed.” It’s a connective tissue disorder that can affect the entire body, from joints and muscles to skin, organs, and more.

This is why no two people with EDS present the same way. Some may struggle most with joint instability, others with gut issues, heart problems, or fatigue. Some with everything all at once. It’s complex. It doesn’t mean the patient is difficult or untreatable.

It’s means we need to look further than the ‘oh it’s just hypermobility statement.

[Karen Lubell @karenlubell]

Peter Rowe has a new paper just published about Thoracic Outlet Syndrome in ME/CFS!. (Thanks to @CHRomatowski for bringing it to my attention.). The more studies like this linking structural conditions to ME/CFS, the better. https://t.co/hyOyWAuJZO

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

🚨Our new case report: In a 19yo with #MECFS + hEDS, surgery for neurogenic thoracic outlet syndrome (nTOS) resolved arm numbness and unexpected systemic symptoms—migraines, vertigo, cognitive fog, even reversal-of-vision episodes.

Screening for TOS in ME/CFS may be key.

DOI: 10.7759/cureus.90494

[Austin Robert @ar_pnw]

@EvitorialPage I… am with you on this one!

[Austin Robert @ar_pnw]

New case study! A patient who had TOS surgery saw a reduction in their #MECFS and #POTS symptoms 🥹

https://t.co/c9UjT85Qw4

[Austin Robert @ar_pnw]

“This experience suggests that those with #hEDS and #mecfs should be more carefully screened for brachial plexus dysfunction.”

[Austin Robert @ar_pnw]

@linds_longcovid “How did you arrive to the conclusion that someone who’s chronically-ill can ‘think’ their way out of their illness? Do you ask this to cancer, AIDS, ALS patients?”

[Austin Robert @ar_pnw]

@robinsoped101 That could be TOS. Lifting arm = compression of a vein = compromised venous flow.

[Austin Robert @ar_pnw]

@robinsoped101 @himmatb15 You absolutely should. I’m glad they recommended it!

[Austin Robert @ar_pnw]

@himmatb15 Some are pursing them and they’re seeing improvements in POTS symptoms. But most get relief in their core compression symptoms (abdominal pain, leg pain… etc.)

[Austin Robert @ar_pnw]

@himmatb15 100% of Dr. Kaufman’s patients he’s referred for abdominal compressions evaluation have come back positive.

[Austin Robert @ar_pnw]

@himmatb15 This is sort of a newer finding among doctors literate in POTS / EDS / MECFS. I’ve seen a surge of patients starting to get evaluated for it and many have come back positive for some abdominal compression.

[Jeremy Jeffs @magnetoJJ]

For the next few weeks I’ll share stories from my photo project about #MECFS

Before Hillary became ill she was an entrepreneur, running companies, sponsoring motor racing, making music and living a full life.

Updates on exhibition & book: https://t.co/6hudecBO4h
#MEAwareness

[👻ghost of submersibles ablaze🌊 @MECFScomrade]

Now Bridget is gone. This is why you need to take people seriously when they’re struggling. Heartbreaking

[Dfrizz @Dfrizz007]

Bridget passed the next day I just saw on Facebook. Rest easy friend . Cardiac event it said

[Emily Johnson (is on Mastadon and Bsky) @emily_rj]

So half of a bone compressing my jugular is stuck in a nerve bundle and can’t be removed without major permanent nerve damage (half is out)

Neurosurgeon: I will have nightmares about this! (jokes and steroids help, my bones ruining my life stays a joke) 🧵https://t.co/lts1LL5ocX

[Hannah Davis @ahandvanish]

Does anyone know of providers treating CCI non-surgically in or near NYC/Brooklyn?

PT, PRP injections, etc all very welcome. #LongCovid #mespine

[Matt @MGTmecfs]

ME/CFS is one of the worst things a human can experience on this planet. In terms of long term suffering and despair, it's in a league of its own. I don't know the reason human souls come to Earth, but ME/CFS destroys any potential reason for being here.

[Austin Robert @ar_pnw]

Have spent some 2 hours riding in Waymo’s over the last week and all I will say is: I no longer trust human drivers. That’s all.