Austin Robert

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

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.

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. cureus.com/articles/39410…

🚨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

@EvitorialPage I… am with you on this one!

@ar_pnw Not for nothing but TOS surgery scares me quite a bit. I am so glad she's doing better

New case study! A patient who had TOS surgery saw a reduction in their #MECFS and #POTS symptoms 🥹 cureus.com/articles/39410…

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

@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?”

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

#MECFS #LongCovid Do you all experience #PEM from upper arm use? My muscles "collapse" completely drain of energy. One reason I dread washing my hair. I know we can have PEM/PESE from washing hair. This is crushing "fatique." Just use of arms and seems to involve cervical issues.

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

@ar_pnw @himmatb15 My ME doctor wants me evaluated as well. Her concern is abdominal compression.

From the POTS subreddit. One of my many regrets is not seeing a vascular surgeon for extensive testing when it was still physically possible for me to do it. But also, wild that none of the many neurologists or cardiologists suggested i see one.

@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.)

@ar_pnw Whoa that's a lot. Are they usually getting stents?

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

@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.

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: tinyurl.com/58khuv8z #MEAwareness

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

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

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) 🧵gofundme.com/f/help-emily-g…

Does anyone know of providers treating CCI non-surgically in or near NYC/Brooklyn? PT, PRP injections, etc all very welcome. #LongCovid #mespine

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.

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.