Ahead of #LongCovidAwarenessDay this Sunday 15th March, I've just updated my profile pic using the 2026 design, link below 👇🏻 The beautiful necklace and maskchain in Long Covid colours 🩶🖤🩵, both of which feature the LC ribbon, was designed and made by @Starseeker1986 1/

Tactical Unity: We Don’t Need Total Agreement to Win 🤝 Logic must come first. We can disagree, block each other, or dislike each other, and still unite around four non-negotiable demands 🎯: 👉 Standardized, accessible testing 🔬 👉 Pathology-driven treatments 👉 Clear clinical diagnostics 🩺 👉 Comprehensive social supports 🛡️ History shows that fierce rivals routinely set aside personal differences for a single vital objective. In activism, this is tactical unity, focusing strictly on shared demands. During the AIDS crisis, ACT UP used three strategic principles to force systemic change: 👉 🎯 Laser-Focused Demands: Concrete policy changes (like viral-targeted tests and early treatments), not vague goodwill. 👉 🤝 Action Over Ideology: Anarchists, conservative professionals, and scientists marched together. Since many of us cannot physically march, our unified voice online is our action. 👉 🧠 Technical Mastery ("Inside/Outside" Strategy): They formed a Treatment & Data Committee that mastered drug trial biochemistry, forcing their way into FDA boardrooms. This is what we are missing today. While patients have suffered over the last 7 years, outside interests have taken over advocacy in ways that benefit corporations over victims. We need a Treatment & Data Committee run by real, severely ill patients, not mouthpieces who can ignore the cruel reality of this disease. The most severely ill among us know what we need because we live the hardware failure every single day ⚡ 💥Some of us understand the science more that those mouthpieces.

● De la formation et de l’information à destination des soignant·es à jour des connaissances et avancées scientifiques nationales et internationales ; En 2026, ce devrait être le strict minimum. Ce mépris institutionnel doit cesser.

Elles doivent correspondre à ce qui a été validé avec les associations de patient·es, afin de pouvoir aboutir à : ● Un suivi structuré pour tous·tes ; ● De la prévention contre la transmission aéroportée ;

🪧 Des images de l’action d’hier ! 🔥 2 ans de discussions, et rien de concret. Nous avons conjointement demandé à l’ARS de cesser de faire perdre leur temps aux malades et d’engager immédiatement de véritables actions.

France 🇫🇷 - LC die-in ✊💪👏🙏

This was the day before Borden’s last posts No disabled person should have to fight so hard for the care & procedures they need to survive. And it’s exactly what happened to him. The NHS let him down.And rather than act, he was directed to PALS (the complaint service) BEFORE help

Christina Applegate's doctor congratulating her on not having MS and her loved ones (?) being happy is such an abled perspective on chronic illness. The problem isn't the diagnosis, the problem is what's happening in someone's body. This is how #MedicalGaslighting looks like. 1/3

My friends who keep dying and stroking out and developing disability do not need to learn how to pace their final days into the grave. We all need proper tests and treatments. This is total bullshit. I am losing my cool. Seriously fuck off with your peptides, supplements and bandaids!! It's not keeping people from getting worse or dying from this disease. Show me the mother flipping money!! So many wasted dollars on this crap! Pacing and deep breathing?!!! FUCK U!!!! #LongCovidGrift #LongCovidKills #LongCovidisChronicVirus

Our friend in the Long Covid community Gavin died fighting trench warfare. Severe, complex chronic illness is trench warfare - WWI style. The medical support is often WWI style too, and this defined the last days of Gavin’s life. He was still in his 40s, a light in our community, and he fought to stay alive.

A Swiss court has ruled that Long Covid in a nurse IS an occupational disease. None of the four UK nations have done this yet. shh-uk.org/swiss-court-recog… #LongCovid #LongCovidAwareness #HealthcareWorkers #NHS #MECFS

Do people who run Long Covid advocacy groups care about Long Covid? This sounds like a flippant question, but actually it’s not.

The CDC might take away a key data source on Long COVID and ME. You have until this Tuesday, October 20, to tell them why that would be a mistake. The advocacy group Solve ME has put together a script that people can use to leave a comment: solvecfs.org/cdc-me-cfs-long…

Absolutely heartbreaking to hear this morning that my mate Gavin @Gavtaraysin has gained his wings 🪽🥲 G was such a lovely person who always showed me support and kindness. I will miss my our chats, banter. May he now rest in eternal peace ❤️

RT @DebHolloway: I often wonder how my life, the lives of my #LongCovid friends, the lives of #pwLC everywhere, and the health of the world…

🧵 THREAD: Beyond "Irritation" 🦠🦴🩸 How Viral Persistence Causes Structural Nerve Damage & Muscle Lockdown 🦴🩸 Medicine often dismisses chronic-viral neurological symptoms as simple "irritation" or "hypersensitivity." ❌This is inaccurate. What is actually happening in LC is chronic, structural nerve starvation and microvascular damage driven by viral reservoirs lingering in deep tissues and bone marrow. 🧬🩸 🚒 The Engine: Persistent Viral Reservoirs SC2 hides in deep tissue sanctuaries (gut mucosa, vascular endothelium) and in bone marrow megakaryocytes. These infected bone marrow cells continuously manufacture and shed virus-carrying, inflamed platelets into circulation. As these platelets move through the microvasculature, they act as constant inflammatory targets. 🚨 💥 The Catalyst: Mast Cell Explosion Mast cells sit wrapped directly around microvessels and peripheral nerves. When they detect persistent viral antigen and virus-laden platelets, they degranulate, dumping histamine, tryptase, leukotrienes, and pro-inflammatory cytokines directly into the local neuro-vascular environment. 🧪🔥 🗜️ The Damage: Choking Off the Vasa Nervorum Here is the key distinction: nerves aren't just bathed in irritating chemicals from the outside, their internal blood supply is being destroyed. The vasa nervorum are the microscopic capillary networks that feed oxygen and nutrients directly into nerve fibers. Severe local inflammation and endotheliitis degrade and choke off these tiny blood supply lines. 🩸⚡ ☠️ Hypoxia & Structural Nerve Degradation Without working vasa nervorum, nerves suffer from continuous local ischemia and hypoxia (oxygen starvation). This is not a temporary "glitch", it is physical damage to the nerve architecture (driving small fiber neuropathy and axonal loss). Starved of oxygen, the nerve’s electrical baseline collapses into erratic, non-stop danger firing. 🧠💥 💪The Reflex: Unyielding Muscle Hypertonicity When starved, damaged nerves send relentless, high-volume danger signals back to the spinal cord, the central nervous system reacts by locking down the region to "protect" it from perceived injury. 🦴The spine sends continuous motor commands forcing nearby muscles (pelvic floor, neck, lower back) into sustained, vice-like spasms (hypertonicity). 🔒 ✅ The Reality Check: Muscle tightness, neuropathic burning, and autonomic crashes are not "functional syndromes" or psychological stress responses. ⛓️They are the downstream output of a clear biological chain reaction: Persistent Tissue/Marrow Virus ➡️ Mast Cell Degranulation ➡️ Vasa Nervorum Loss & Ischemia ➡️ Structural Nerve Damage ➡️ Reflexive Muscle Lockdown. Until the upstream viral reservoir and microvascular destruction are stopped, the starved nerves will continue forcing the body into lockdown. 🛑 #LongCovid #MastCellDegranulation #smallNerveDamage #LongCovidisChronic

Science keeps learning more about COVID, and policy is always catching up. Researchers say it’s worth refreshing guidance as new evidence emerges, including how the virus spreads through the air and how we protect healthcare staff. 🎥 Watch: shh-uk.org/covid-19-health-p…

Inflammatory and immunologic analysis of bronchoalveolar lavage from patients with post-COVID-19 lung disease 🚨New BAL study finds 3 distinct inflammatory phenotypes in post-COVID lung disease (lymphocytic, neutrophilic, normal), but no clear match to CT patterns or outcomes. Persistent viral protein may keep the fire burning! ➡️Clinical bronchoalveolar lavage (BAL) fluid from 37 patients with suspected post-COVID-19 lung disease (5 acute <28 days; 32 post-acute, median 178 days post-PCR, range up to ~2 years) were analysed in this interesting USA study( 2020-2022), ➡️BALs were collected from Oct 2020 through early May 2022, and clinical follow-up extended to early 2026 (or death/last chart note), ➡️Samples were assessed for cell differentials, SARSCoV2 spike protein (ELISA), and local antibody responses, then correlated with chest CT patterns and clinical outcomes, ➡️Three inflammatory phenotypes emerged: - Lymphocytic-predominant (lymphocytes ≥15% and >neutrophils; ~32%), - Neutrophilic-predominant (neutrophils ≥10% and >lymphocytes; ~35%), and - Normal cellular differential (~19%), ➡️Spike protein was detected in acellular BAL in ~49% of subjects (higher than controls), persisting up to 627 days post-infection, ➡️Local antibody responses were common: total anti-SARSCoV2 antibodies in 61% of tested samples and neutralizing activity in 30%, ➡️No clear association was found between BAL inflammatory pattern, CT findings (ground-glass, interstitial, mixed, or other), or long-term outcomes (alive/no oxygen vs. death/transplant/oxygen), ➡️The authors conclude that post-COVID lung disease is heterogeneous, with distinct inflammatory milieus potentially driven in part by persistent viral protein. ‼️So, post-COVID lung disease is not one disease but a spectrum of lingering lung inflammation, sometimes with residual spike protein detectable years later, that defies simple links to imaging or outcomes and complicates both diagnosis and research. ‼️For people with ongoing breathlessness, fatigue, or other post-COVID symptoms, this underscores that lung inflammation can persist long after the acute infection clears and that residual viral proteins may contribute. It supports the reality of heterogeneous LongC0VID lung issues, the value of targeted investigations (like BAL in selected cases), and the need AGAIN for personalized approaches rather than one-size-fits-all assumptions. It also highlights why broad clinical trials based only on symptoms demonstrate difficulties to interpret! #LongC0VID #PostCOVID #AvoidSars2 #AvoidReinfections frontiersin.org/journals/mic…

Tomorrow at 12pm, the Inquiry will publish its sixth report: ‘Care Sector’ (Module 6). Soon after, you will be able to watch the Inquiry Chair, Baroness Hallett’s statement on her findings and recommendations via the Inquiry YouTube channel 📺.

The cycle 🔄 continues.

I feel this is how medicine will transition into the next phase of Covid denialism: they cannot deny the fact so many people are sick, so they will hyperfocus on the secondary illnesses w/o ever mentioning the name of the virus that triggered it, since naming the C Word would