Inaction isn't neutral. Treating COVID as a transient cold while the biology keeps pointing at durable, mechanistic, multi organ dysfunction is a choice - and at population scale, the cost of not preventing infections lands on real bodies.

"Frontiers In" is the new MDPI.

Getting something wrong is normal. Spending a week proving you can’t possibly be wrong is a choice.

We have these massive data centers the size of cities and quantum computers that can run trillions of years of computations in seconds, yet we can’t figure out what meds to prescribe someone with complex chronic illness. Spaceships and robots are advancing hundreds of years into the future and healthcare is stuck in the Stone Age. What bizarre, horrible, lopsided technological progress.

sometimes i earnestly wonder why there’s a printed caution on plastic bags reminding us they’re not toys but then i see posts like this and remember that’s why

The problem with articles like the Wired one is LongCovid patients aren’t the intended audience. These articles aren’t meant for us. They are for our families, our doctors, our employers, & our elected officials, & they are used to harm us.

⚠️ I think this is exactly the problem. When patients with ME/CFS, fibromyalgia or Long COVID defend themselves, it is often framed as “protecting an illness narrative.” But if your disease were constantly minimized, psychologized, ignored, and left without biological treatments, while patients are told they are exaggerating or inventing symptoms, this would not feel like protecting a narrative. It would feel like defending the basic right to be taken seriously and treated with the same dignity as patients with any other disease. These narratives do not only affect medical care. They affect families, friendships, work, disability support, and social isolation. Patients are not protecting illness. They are protecting themselves from being abandoned by a system that too often turns unexplained biology into psychology. I invite you to read the full thread, because I do not think this is a fair defense of the article: x.com/manruipa/status/206189…

This is the article to amplify this week. “Long COVID confirmed a difficult reality: modern healthcare systems are optimized for diseases that can be rapidly diagnosed, categorized, and treated — not illnesses that require uncertainty tolerance, longitudinal care, and deep listening.” Long COVID Changed Everything open.substack.com/pub/britta…

absolutely breaks my heart to see Stephan suffering like this. whatever you do or don't believe, send this young man something heartfelt and real.

Just want to note, he wrote a piece two years ago in The Chronicle of Higher Ed where he claimed that disability accommodations were just being handed out to anyone and that we need better means testing because kids are "faking it" to get college supports.

If LC and ME/CFS are due to the brain being "stuck in a feedback loop of fight or flight," then why are we not allowed to give blood? Why does our blood damage muscle tissue that's exposed to it? (See study👇🏼) Maybe it’s Maybelline. Maybe it’s fucking mitochondrial damage.

That the world is collectively failing at public health and is having an equally collective episode of cognitive-emotional dissonance covering that up with loads of make-believe is a whole different story. I wish it were different and I wish we would handle it. We don’t.

That suggests PEM may represent a biologically distinct phenotype within long COVID. Not all long COVID is the same disease process. Patients with PEM may have a different neuroenergetic/autonomic profile than patients without PEM.

Getting sick and not recovering

Six years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing grassroots movement of people, who weren't recovering from covid. Across the world, we're still fighting for research and treatment of our disease

RT @DebHolloway: The amount of fear, pain, suffering, grief, and isolation behind the scenes in my small corner of Long Covid Land this wee…

Reminder: Long COVID's disability & suffering will be the pandemic's most devastating long-term global legacy. Neither GBD supporters nor critics anticipated its scale or included it in their policy calculus -and “let er rip” strategies prioritizing widespread exposure clearly worsen the toll. Millions affected, with real costs in lives and productivity (on top of 20 million direct deaths globally, which we should never forget or minimize). nature.com/articles/s43856-0…

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/10.64898…

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.

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…