Elly Bailey

@Herd851 @JeromeAdamsMD “Optimizing for health span?” Is that like looksmaxxing? 🤓😁 Nobody’s talking about driving ID to zero. Everybody’s talking about how viruses = all kinds of long-term suffering/disease/death, though. PS: “A few falling by the wayside” is not a human model. It’s a capitalist one

@JeromeAdamsMD We are optimizing 2 different problems. PH careerists (such as yourself) are fixated on reducing infectious disease (ID) at all costs. CC's (such as I) are focused on optimizing for health span. A 360-degree systems view. And driving ID to zero may not be the right answer.

All those comparing the attention on #Hantavirus to heart disease or cancer deaths are right: we desperately need more focus on chronic disease. But they also miss a key distinction. We just lived through a global pandemic that drove a massive surge in deaths: ~20 million excess, plus millions disabled by Long COVID (not to mention the actual increase in cardiovascular deaths due to Covid). Highly contagious infections can spiral out of control fast when not well managed. We have to be better at managing both chronic and acute health threats – and we shouldn’t compare apples and oranges.

MIT researchers studying 8 COVID-19 decedents used a new imaging method to reveal nanoscale SARS-CoV-2 spike proteins clustering with amyloid in the brain, alongside signs of neuroinflammation linked to Alzheimer’s related pathways. biorxiv.org/content/10.648…

Recommending “sleep hygiene” to pwME for our sleep problems has never been anything more than insulting imo. It’s as bad as telling someone with severe chronic pain to try paracetamol, if not worse.

@Naomi_D_Harvey I’ve had positive increase in mood and energy when I go on this stuff occasionally. It doesn’t seem to last, though. it’s one of the ones I kind of worry about taking long-term anyway. 5 mg is worth a try. I think id be wary of trying a lot without trying a modest dose 1st

Can I ask how many here have tried pregnenalone? #MEcfs

Tissue-specific autoantibody signatures reveal immune alterations undetected by routine serology in long COVID 🚨83% of long COVID patients have rogue autoantibodies attacking their own heart, lungs & blood vessels, and every standard blood test misses it completely. VERY INTERESTING! ➡️In a UNIQUE Hungarian cohort of 114 long COVID patients versus 36 pre-pandemic controls, tissue-specific Western blotting detected autoantibodies in 83% of cases, with strong cardiovascular dominance, ➡️Vascular autoreactivity was markedly higher in long COVID (34% vs. 8%, p<0.05), cardiac (54%) and pulmonary (34%) signals trended elevated but did not reach significance( cohort size?), ➡️Autoantibodies were predominantly IgM-skewed, polyreactive (up to 8 bands per patient), and persisted longitudinally (mean 141 days), with new isotypes emerging over time, ➡️Standard ANA testing showed no group differences and zero clinical correlations, rendering it useless for detecting these alterations, ➡️Cardiac autoreactivity associated with hypertension and headache, overall autoreactivity correlated with anosmia/ageusia, female sex, CRP, BMI, creatinine, and troponin levels, ➡️The study used human cardiac, pulmonary, and vascular tissue homogenates. ➡️Findings were independent of routine serology and highlight an under-recognized immune component invisible to current diagnostics. ➡️“This persistent, IgM-skewed profile suggests ongoing immune dysregulation and may reflect a previously underrecognized component of the immunological response in long COVID, highlighting the need for targeted immunodiagnostic approaches beyond routine serology.” ‼️Why this is shocking: It proves that in 83% of long COVID patients, the immune system is actively producing autoantibodies that directly target their own heart, lung, and especially blood-vessel tissues, yet every standard blood test (ANA HEp-2) comes back normal. These rogue antibodies are polyreactive, IgM-dominant, persist for months, and keep evolving. They correlate with real symptoms (anosmia, hypertension, headache) and lab markers of damage (troponin, CRP). ‼️In other words: The majority of long COVID sufferers have smouldering, organ-specific autoimmunity that is completely invisible to routine diagnostics. Doctors are flying blind while patients’ tissues are quietly under autoimmune attack. 🤔As far as I know, this is the first direct evidence of hidden, cardiovascular-dominant tissue autoimmunity driving the chronic L0ngC0vid phase! #BookMark #AvoidSars2 #AvoidReinfections link.springer.com/article/10.100…

Welcome back Aaron Please do follow his new account 👇 #pwME #LongCovid

Today is MECFS awareness day. I have been sick with this disease since 2020. I am now mostly homebound, my days of playing long soccer games are long gone. The going to the movies days are gone, the driving to the bars at night days are gone. There is indeed something transforming about this illness, yeah you become much more limited that is true, at the same time, in a way you become very resilient. I hope a treatment comes one day, my peers with MECFS and I deserve it.

@DebHolloway @aparachick This was all the first year I was sick. I have far less trouble with heart stuff now than I did.

@ellbail @aparachick Wow.

Finally got to a cardiologist after a year being sick…was told the reason my heart rate was going down into the 30s during the day was because I “needed to have better control over my emotions”

@DebHolloway @aparachick Yeah, that’s usually how it works! But even with normal thyroid levels I was cycling from low thirties to sometimes over 200 bpm in the shower.

@aparachick @ellbail Mine goes up.

@Dfrizz007 Shiza, D. It’s such a rage-inducing problem to have. When it gets bad for me, I hate even going to bed at night. Just makes me so angry and upset. You have my sympathy 🌼

@ellbail tried low does mirtazapine and high does (45mg). nothing works

i'm back to averaging 3-4-5 hours of sleep if im lucky on the 5 side....feels like 15 seconds either way.....i'm taking trazadone, melatonin, and klonopin. not helping for the sleep part. i'm (we) are literally sleep deprived . this is so MF cruel

1. Vector-borne illnesses, such as Lyme and Bartonella, can increase hypermobility. 2. Treatment usually includes doxycycline. 3. Doxycycline inhibits collagen-degrading enzymes and shows initial promise as a hypermobility treatment. 4. Question is, at what dose, and is long-term use OK? How effective is the methylene blue alternative? How to dose that? 5. I got an MMP9 measure right at Doxy pre-treatment, and I'll get one afterwards to see what happens lol. I think it's helping put Humpty Dumpty back together.

HIV activists ACT UP seized the FDA. They dumped patients ashes on the White House lawn. They marched coffins through DC. And it worked. Long Covid patients are being told to wait politely. Polite has never moved the world on a health crisis.

AS I HAVE BEEN SAYING, THE AUTONOMIC NERVOUS SYSTEM IS RESPONDING TO HYPERMOBILITY. If an infection triggered or worsen hypermobility, then "dysautonomia" will follow suite to signal: 1.) "Hey, we are stressed about this neck instability, this joint dislocation, panic panic, please tighten your muscles" 2.) "Hey, your vascular compression and other blood vessel issues are now causing poor venous return, please overcompensate with increased heart rate to improve blood flow." Mast cells are in connective tissue. They will degranulate more frequently as hypermobility worsens, causing a floodgate of inflammatory mast cell mediators to rush the brain and body. This will cause neuroinflammation, more dysautonomia. If we stay stuck only thinking about the brain, then we miss out of most of the story.

Meine Mutter hat nach dem Symposium geweint, weil ihr klar wurde, wie prekär die Versorgungslage ist und wie sehr die Studien nur ein Tropfen auf den heißen Stein sind. „Was nützen 44 Hausärzte in Berlin, die aus Angst davor überrannt zu werden anonym bleiben, wenn 95% der

1 mask in a group of "experts". lmao

@SalvMattera @RogerSeheult This comment rocks, especially if you know anything about the severity and swiftness of this illness. One of the young Four Corners victims collapsed and died while out dancing during the 1993 outbreak

@RogerSeheult Do you think they could cure themselves if they just went on top of the boat and sunbathed?

No rats found on ship. 👀 youtu.be/2ap5lJKOQ-4?si…

Why do people psychologize Long COVID? Why have people psychologized ME/CFS for decades? I have been thinking about this for a long time, and I think I finally figured it out. It's not that doctors are stupid or cruel. It's that the alternative to "you're crazy" is "our entire society is organized in a way that sacrifices people like you, and we know it, and we've decided the cost of fixing it is too high." Psychologization isn't a diagnostic error. It's a defense mechanism. Not for the patient, but for society. If a common virus can destroy a healthy person's life, then every school, every office, every restaurant, every airplane is a potential site of life-altering harm. That's an intolerable reality for a society built on the assumption that showing up is safe. So the person who got destroyed becomes the anomaly. The anxious one. The one with pre-existing vulnerabilities. The one whose personality predisposed them. Anything to keep the virus from being the cause, because if the virus is the cause, then every subsequent infection is a policy choice.