Lou Sasole

@chydorina i have this in spades palliative bc of it violent brain problems for years worse w each reinfx

Finally! A paper that looks at the role of glymphatic system dysfunction specifically in MECFS. Remember - we were not even aware of this system - the glymphatic system - existed until 2014. So, this is still cutting edge research. search string for my previous posts on the glymphatic system: x.com/search?q=glymp… Importantly, we now know that glymphatic system dysfunction is likely a big player in Alzheimer's pathology (and that while not identical, much of the pathology seen in Alzheimer's is also seen in MECFS). The basic links is: Not getting enough restorative (DEEP) sleep. This is the sleep stage that occurs early on in the night. The one many of us miss entirely or almost entirely because we are too adrenalized and mast cell circadian shifted to get this crucial sleep stage. Its in the deep sleep stage where the glymphatic function cleans out the build up of toxins in the brain. In people with neurodegenerative and other conditions MORE toxins are produced than in otherwise healthy people so it makes sense that this sleep period is even more important for us than it is for healthy people. As hard as it is to get more deep sleep in MECFS it is one of the most important things you can work on. For years I let my circadian shift run wild and slept mostly in the early morning. I was always up at night. This was a period of severe decline and was the worst my state had ever been. It took a long time to get sleep back on track. It was a priority for me for a long time - but I did it. I still get less deep sleep than I want - but it has improved and the improvement is very obvious - both mentally and physically. The difference between an OK day and a bad day now is almost always because I loosened up on my sleep hygiene (which is not the same as for healthy people). I have a lot of posts on sleep - search "sleep (from:chydorina)". x.com/search?q=sleep… Glymphatic System Dysregulation as a Key Contributor to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

@mryoung151 cool i have serious chronic covid w serious neuro and serious immune etc. swore off vax subce 2021 bought the novavax hype got it three days later, mysteriously, all hell broke loose sick af wound up weeks later going into hosp for help then reinfx

👏Updated COVID-19 vaccine formula produces antibodies nearly three times longer than earlier versions, Emory study finds. the new COVID-19 vaccine formulations produce antibodies with a half-life of more than 500 days news.emory.edu/stories/2025/1…

@elisaperego78 this is not nc true. i am treated like dirt and left for dead w serious immune and cerebrovascular disease from covid. money does nothing. nobody gives a f. drs ignore brain scans and its all pro forma liability limiting bs. you know, mansla--ter.

When tests and medical care are available for #LongCovid, the wealthy and the powerful are getting it, for example via private or concierge services. To us, they'll say LC is just some "fatigue" and "unexplained symptoms". Many play along, as it's not them to suffer

@EricTopol neuro covid ppl have fmri commonality of microvascular, mitochondrial, inflamatory, glymphatic and connectivity brain damage

Optimistic people have functional MRI commonality of neural processing for imagining the future (whereas pessimists have a diverse pattern) pnas.org/doi/epdf/10.10…

@sun_in_winter12 youre kidding right? you mean, waking up with brain damage? jfc. please.

#longcovid #mecfs peeps- has anyone dealt with waking in the middle of the night and not being able to get back to sleep? Did anything help you? Trying to help out a friend right now… thanks in advance!

@hausofhemlock @drseanmullen i have devastating attacks in brain every time fall asleep. metabolic derangment. global hypomet. glymphatic and mitochondrial damage. and endotheliitis. NO neuro care. NONE. IGNORED. bedridden/self palliative. drs dont give a shit. black out constantly. gaslit. left for ded

@drseanmullen I was just diagnosed with frontal lobe parenchyma atrophy on brain MRI which is more advanced than it should be for my age. I’ve had severe Long Covid since late 2020. I struggle with recalling words, mid task distraction, neuromuscular problems, tremors, incontinence etc.

I’ve spent two decades studying how brains age. And I’ve never seen anything quite like this. In normal aging, some neurons die—but it’s gradual, region-specific, and the brain compensates remarkably well. Most of what we see is driven by loss of synaptic connections, not widespread neuron death. Behavioral changes tend to be slow, subtle, and mostly involve executive function. In neurodegenerative diseases like Alzheimer’s and Parkinson’s, it’s different. These diseases kill neurons. The decline is faster, deeper, and more functionally disabling. What we’re seeing in young adults after SARS-CoV-2 infection doesn’t fit either pattern.
We’re seeing signs of early, widespread cognitive impairment—slowed thinking, weakened memory, executive dysfunction. Not just in one domain. Not just in one region. Almost every study that looks for brain damage post-infection finds it. This suggests accelerated neural de-differentiation—a breakdown in how specialized brain regions communicate and function. It's something we normally see decades later. Impairment doesn’t always mean permanent disability. But if neurons are dying, those cells aren’t coming back. And yes—cognitive disabilities have also spiked dramatically since 2020. There’s no other plausible explanation for the scale and timing of this trend. Meanwhile, self-styled truth-tellers with zero background in neuroscience or cognition keep minimizing the risks—spreading the idea that these impairments are rare, minor, or imagined. Speak up with evidence? You’re called an extremist.
Refuse to play along? You’re accused of fear-mongering. My biggest mistake? Thinking these folks were just misinformed.
They’re not. They’re propagandists. It’s 2025.
The damage is measurable.
The science is clear.
And the longer we pretend this is normal, the worse the outcomes will be.

@LauraMiers @GerardVriend3 neuro covid gaslighting is rampant, even at mst prestigious health systems that proclaim experts. drs leaving ppl w intense brain dam vascular and metabolic alone to die. gaslighting/ly ignoring pet and fmri. left like dogs and psych bs all over records so drs wont touch them

@GerardVriend3 This is the extent of the study I’ve seen on LongCovid + pregnancy. To my knowledge, I haven’t seen any studies on babies born to mothers with LC. And of course SARS-CoV-2 persists in bodies regardless of a LC diagnosis.

“Researchers at the University of Miami reported on Thursday what they believe are the first two confirmed cases in which the SARS-CoV-2 virus crossed a mother's placenta & caused brain damage in the infants they were carrying.” reuters.com/business/healt…

@outbreakupdates people w covid brain damage being thrown in psych wards. covid tests unreliable. rampant reinfecx in hospitals by hcw w "allergies." antivirals? for what? havent you heard covid is over?

BREAKING — New antiviral drugs outperform Paxlovid in preclinical coronavirus tests Researchers at the University of California, San Francisco, and Gladstone Institutes have developed two experimental antivirals (AVI4516 and AVI4773) that outclassed Paxlovid in preclinical testing against both SARS-CoV-2 and MERS.

@StevePhillipsMD x.com/StGermainFC/st…

Misdiagnosing a chronic illness patient with a primary psychiatric condition ironically often causes a psychiatric condition: PTSD. If doctors only knew the harm they do when they don't listen, don't believe, & don't respect the patient's lived experience.

@DrinkswDave x.com/StGermainFC/st… now in hosp ag w bacteremia

@ShaneyWright x.com/StGermainFC/st…

Interesting that this study from October 2024, comparing post-acute Covid patients & controls using ultra-high field (7 T) quantitative susceptibility mapping, also linked Long Covid symptoms to brain stem damage — damage to the medulla, pons & midbrain. academic.oup.com/brain/article/…

@CaliforniaCodes whats the point? san diego is amongst the biggest covid gaslighter/deniers in the nation.

Something we depended on in San Diego to gauge infection levels 😭

@DiaryofaSickGrl @LauraMiers "there is no treatment for your brain disease (that makes my brain malfunction the minute i fall asleep), but we will get you the care you need and send you to a psych ward" no home reinfcted convulsing want media coverage

@DiaryofaSickGrl @LauraMiers @LauraMiers falsely accused. taken to hosp ag will. tons of allergies. thrown in pscyh hosp ic and brain dam. every1 w a "cold." imprisoned w virus/sick "roomate". drs have left me. records wrongfully accuse/gaslight. alone. in bed violent brain, numb limbs, guts filled w virus

Tell me about the worst doctor you’ve ever seen (if you’re comfortable)

@DaniBeckman x.com/StGermainFC/st…

Let me rephrase: #NeuroCovid time is already here. But apparently, only a few people in science and a few conscious citizens got it. The rest of society seems to ignore that Covid is helping redefine our understanding of how the brain communicates with the rest of the body.

@loscharlos @thephysicsgirl x.com/StGermainFC/st…

@thephysicsgirl We desperately need high-quality #LongCovid media!

@HarrySpoelstra x.com/StGermainFC/st…

🔥Imagine the results after multiple C19's......are you willing to wait another 5y's to find out? 😷 #Reinfections #NeuroCovid #Braindamage #TooLate

@elisaperego78 x.com/StGermainFC/st…

Reading in 2025 scientific publications on Covid and Long Covid, which prove again and again what was known in 2020-1 already. An endless loop. Yet, we are so late on trials, treatments, access to care, and clinical guidelines

@DiaryofaSickGrl @LauraMiers @LauraMiers contact human rights lawyer and media to cover this. ignored. beyond alone w legal claims everywhere. dr i called out tried to hv committed! cost me everything. brain malfunctions as soon as sleep. treated like criminal.

@DiaryofaSickGrl thrown in psych hosp for wk ppl coughing/sneezing all over me unventilated "unit." falsely accused of threatening dr that gaslit me. HELD AG WILL THREATS TO COMMIT. violently reinfex. brain attacks, imm comp. drs discharged me. literally gaslit. to. death. @LauraMiers

@healingfromlc x.com/StGermainFC/st…

I’ve been awake for 4 nights and the ER doesn’t want to help me