International Long Covid Awareness @LCawarenessInt

Anyone follow me that got disabled from COVID in 2024?

Salvatore Mattera @SalvMattera

2 years ago

@EricTopol Someone out there is going to catch COVID for the third or fourth or fifth time this Christmas, and they're going to develop what will probably be a lifelong disability from it. But Dr Topol told me not to worry! They might say. My immune response was "conditioned"!

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“Long COVID means to me a poorly understood, severely underdiagnosed, debilitating illness with little to no awareness, support or treatments.”—Dr. Elham Raker, a pediatrician and mom to a daughter with #LongCOVID. instagram.com/p/DaCKqDzRi70/ facebook.com/share/p/1EcePk… @MsJulieSLam

We are starting the pre-screening for our biomarker driven phase 3 schLONG COVID clinical trial investigating maraviroc and atorvastatin to treat Long COVID. healthbio.com/trial-registra… More info on the trial: clinicaltrials.gov/study/NCT06974…

Entering hospice care today I can barely post anymore.

In her latest Voices article, Becky Robertson explores the growing body of evidence showing that COVID-19 affects far more than the lungs. Drawing from both scientific findings and lived experience, she examines the neuropsychiatric and multi-system impacts that continue to affect millions living with Long COVID. This powerful piece connects emerging research with the realities patients face every day, underscoring why recognition, research, and action remain urgently needed. Read the full article, The Multi-systemic Reality: Beyond the Fine Line by Becky Robertson here: whn.global/the-multi-syst… #LongCOVID #COVID19 #PublicHealth #LongCOVIDAwareness #LongCOVID #COVID #InfectionPrevention

So, here is my situation. I can't stand for more than a minute or two without this happening. I can shuffle around the condo, a bit, but not walk in the traditional sense. I can't sit with my feet flat on the floor. My legs must be completely elevated, or this happens. So neither a walker nor a wheelchair is an option for me. Even if they were, my G/I issues keep me homebound. And even if NONE of that was an issue, where could I safely go in today's world filled with unmasked virus-spreaders without being re-infected? Yeah, I am disabled, homebound, bed and couch bound. And this doesn't even touch on the cognitive issues which are horrific and whatever organ damage is happening that I don't know about yet. You don't want this. Not for you. Not for your elders. Not for your kids. Not for your friends. You DONT want this. Protect yourselves. #LongCovid

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57 years ago

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Cedars Sinai deleted the article in the below post this year. It’s gone. It only lives on at Becker’s Cardiology. No one is going to pay for this carnage. We’re on our own. beckerscardiology.com/cardiology/cov…

Laura Miers @LauraMiers

3 years ago

As the high-profile heart attack deaths continue, remember: “The spikes in heart attack deaths have tracked with surges of COVID infection—even during Omicron…The data showed the increase was most significant among individuals ages 25-44…” cedars-sinai.org/newsroom/covid…

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Global prevalence of post-COVID-19 condition (Long COVID): a systematic review and meta-analysis of observational studies 🚨The “mild COVID-19” myth is dead! 🚨We have a double ongoing Pandemic(C0vid-19/L0ngC0vid)! ➡️Shocking systematic review and meta-analysis UPDATE (27 prevalence estimates, >200,000 participants, up till Febr 2026) to estimate global prevalence of Long COVID. ➡️Overall pooled prevalence: 30.8% (95% CI 26.8–35.0%) ➡️Extreme heterogeneity: prediction interval 14.0–54.8%, indicating high variability across studies. ➡️Key subgroups: - Hospitalized cohorts: 37.9% (95% CI 29.5–47.1) - Non-hospitalized/community/mixed: 26.2% (95% CI 22.0–30.9) - WHO-defined PCC: 22.8% (95% CI 14.3–34.4) - Broader symptom-based definitions: 39.7% (95% CI 30.5–49.5) ➡️With a sensitivity (cohort-level) analysis yield at ~31.0%, confirms the main results are solid! ➡️Prevalence varied by region, follow-up duration, and ascertainment methods, studies spanned pre- and post-vaccination eras and variant waves. ➡️Conclusion of the paper: Long COVID/PCC imposes a SUBSTANTIAL post-acute public health burden. Due to extreme heterogeneity, the pooled estimate is a descriptive summary of diverse evidence rather than a precise global figure. The authors call for standardized definitions, harmonized surveillance, transparent reporting (including key variables), rehabilitation pathways, and multidisciplinary care. ➡️Evaluation of vaccination/reinfection impact: The article provides no data, subgroups, or quantitative evaluation of vaccination status, prior infection, reinfection, or hybrid immunity. These factors are noted in the introduction and discussion as potentially influential sources of heterogeneity but were not constantly reported in the primary studies. ‼️OK, high heterogeneity but still……..nearly one in three people who contract SARS-CoV-2 develop Long COVID, a massive, enduring burden that neither vaccination campaigns nor natural reinfections have meaningfully curtailed according to the best available global evidence. This is not a minor or rare sequela, and don’t forget …..many are still unaware of their lingering/silently developing “POST-COVID-19” pathology, with reinfections giving an extra push! We have a widespread chronic public health failure demanding urgent, resource-intensive action beyond infection prevention, that remains a must! DAMM IT…..WAKE UP! #AvoidSars2 #AvoidReinfections frontiersin.org/journals/publi…

This incredible human crossed the stage this week to accept her high school diploma. 4 years. N95. Every. Day. The only masked face in her yearbook. Her senior quote? “Strength does not make one capable of rule; it makes one capable of service.” - Teft, Way of Kings (1/x) 🧵

“I mask to keep myself and my communities safer! F*** COVID!”— Zack Clarence was interviewed by @MsJulieSLam #MaskTogetherAmerica at @PosDevNYC “All Vinyl, All Love” mask-required rooftop party. Everyone wears masks while having a great time! instagram.com/p/DZ83I3DRPB3/

The reason biological therapies like IVIG remain stubbornly "off-label" and nearly impossible to get approved by US insurance for Long Covid is the direct result of six years wasted on superficial symptom surveys and mind-body interventions. This is the handiwork of self-appointed "experts" who eagerly conflated distinct pathologies for nothing new symptom syndromes just to boost their own academic careers and capture funding. Because these figures and massive initiatives like RECOVER have failed to publish the definitive, hard clinical outcomes that insurance algorithms and regulatory bodies require for coverage, patients are left paying the price. Until the research pivots from soft behavioral surveys to indisputable biological endpoints, patients will continue to be starved of life-altering therapies- not because the science isn't there, but because the establishment chose to fund academic careerism instead of cures. Patients need to be aware of this and demand change. 💕

“Long COVID Gut” impacts GI system including the throat…stomach, intestines, liver, pancreas. Following COVID, patients can develop abdominal pain, nausea, reflux, constipation, anorexia, dyspepsia, food intolerance, malabsorption, or new/relapsed IBS 🧵instagram.com/p/DZ2dPuLxi3-/

Cardiovascular sequelae of Long COVID: immune dysregulation inflammation as central drivers 🚨Your heart may still be under silent attack, even years after 'recovering' from COVID. #L0ngC0VID ➡️Another interesting Chinees review sadly bringing the same message! ➡️L0ngC0VID (symptoms >3 months post-SARS-CoV-2) features prominent CV complications including myocarditis, ischemic/non-ischemic heart disease, arrhythmias (including POTS), heart failure, and thrombosis, with elevated risks persisting 1+ years in large cohorts (e.g, US Veterans Affairs data showing increased HRs for multiple outcomes). ➡️Central mechanisms: - Ongoing innate immune activation (PRRs like TLRs/RIG-I, NETs, complement, NLRP3 inflammasome) causing endothelial injury, thrombo-inflammation, and adverse remodelling - Plus, adaptive issues (T-cell exhaustion, subset imbalances, B-cell dysregulation). ➡️Evidence integrates clinical cohorts, autopsies, and mechanistic studies showing persistent inflammation even after viral clearance. ➡️Vaccination is explicitly linked to lower Long COVID risk and CV sequelae (e.g, incidence 9.5% vs 14.6% vaccinated vs unvaccinated, HR 0.59, overall Long COVID HR 0.85 post-vaccination, reduced referrals, and chronic symptoms). ➡️No discussion of reinfections or breakthrough infections ➡️The paper calls for biomarkers targeting these pathways, personalized surveillance for high-risk patients (especially those with comorbidities), and therapies against persistent inflammation. ‼️So, AGAIN, even “recovered” hearts stay under silent siege from never-ending immune fires, endothelial sabotage, micro-clots, and remodelling fuelled by persistent inflammation long after the virus is gone. Vaccines measurably cut the damage, yet this brand-new review is completely silent on what repeated infections might do to an already dysregulated system. If one infection can leave lasting CV scars via immune chaos, what happens with reinfections? Urgent studies on cumulative hits are needed before more hearts pay the hidden ugly price! MEANWHILE ONE ADVICE : #AvoidSars2 #AvoidReinfections #L0ngC0VID #HeartHealth #YouOnlyHaveOneHeart frontiersin.org/journals/immun…

Yes. Even kids. My daughter has been wearing a heart monitor this past month, due to reports of chest pain and dizziness, among other symptoms, upon exertion. Result of covid infection. So far, no help.

Dr. Sean Mullen @drseanmullen

2 weeks ago

Doctors are wiring athletes up with sensors, running every test imaginable, trying to explain why elite performers can’t do the things they used to do. Meanwhile, the answer is standing right in front of them, bare-faced. “Diabetes after COVID?” Gee, I wonder where we’ve heard

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Doctors are wiring athletes up with sensors, running every test imaginable, trying to explain why elite performers can’t do the things they used to do. Meanwhile, the answer is standing right in front of them, bare-faced. “Diabetes after COVID?” Gee, I wonder where we’ve heard that before. It’s almost like there are thousands of published studies showing COVID can affect metabolism, insulin regulation, cardiovascular function, cognition, and physical performance. They’ve spent years pretending a virus linked to hundreds of long-term complications is “just a cold.” The experiment is ending. The data are arriving. Reality doesn’t care about the narrative.

José Morón @jmgmoron

2 weeks ago

Sinner ha sido visto estos días en Montecarlo usando este dispositivo, que ha despertado el interés de más de uno, preguntándose qué es eso. Es algo muy concreto. El italiano parece estar usando un sensor de glucosa, un dispositivo cada vez más utilizado en el deporte de élite

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“Long COVID underscores the importance of continuing to invest in research, supporting those living with chronic symptoms, and communicating the science accurately and compassionately.”— Dr. Asher Williams instagram.com/p/DZz8-Zsxtnh/… facebook.com/share/p/1Egjb5…

Endothelial Dysfunction and Early Renal Injury Biomarkers in Hypertensive Patients After COVID-19 🚨You have hypertension, well, even ‘mild’ COVID might leave you than with hidden kidney damage that standard blood pressure meds are likely unable to fully handle. Now imagine post Covid-19 hypertension development and then having reinfections!😧 ➡️This Interesting study compared 120 hypertensive patients (aged 30–60, Stages I–III) with vs without prior COVID-19 (3–6 months post-recovery) at a hospital in Uzbekistan. ➡️It assessed endothelial/podocyte injury markers, renal functional reserve (RFR), and response to 6 months of standard RAAS blockade. ➡️Study findings: 1. Post-COVID hypertensive patients (3–6 months after recovery) showed consistently higher markers of endothelial–podocyte injury than non-COVID controls across all hypertension stages. 2. Urinary nephrin (early podocyte injury marker) was significantly elevated even in Stage I hypertension (126.5 ± 9.1 vs 91.9 ± 8.3 pg/mL, p < 0.01) and remained higher in Stage III (203.3 ± 11.2 vs 164.5 ± 9.7 pg/mL, p < 0.05). 3. In Stage III, post-COVID patients had higher VEGF-A (286.1 ± 16.4 vs 223.2 ± 12.6 pg/mL, p < 0.01) and 1.3-fold higher TGF-β1 (p < 0.01), indicating endothelial activation and pro-fibrotic RAAS signalling. 4. Microalbuminuria was detected in 100% of post-COVID Stage III patients versus 85% of non-COVID controls. 5. Renal functional reserve was selectively impaired in post-COVID patients (Stage III: 7.8 ± 1.1% vs 12.5 ± 1.6% in controls, p < 0.001). 6. Nephrinuria showed strong negative correlations with renal functional reserve (r = −0.824, p < 0.001) and eGFR (r = −0.797, p < 0.001). 7. After 6 months of standard RAAS blockade, reductions in nephrinuria, microalbuminuria and TGF-β1 occurred in both groups, but the magnitude of improvement was smaller in the post-COVID arm, especially in Stage III. 8. No data on reinfections or vaccination impact were reported in the study( =Limitation) ➡️Study Conclusion: “In hypertensive patients aged 30–60 years, prior COVID-19 was associated with a stage-amplified pattern of endothelial activation (elevated VEGF-A), podocyte injury (elevated nephrinuria), pro-fibrotic RAAS signalling (elevated TGF-β1 and aldosterone) and impaired renal functional reserve, accompanied by adverse intrarenal Doppler indices. In post-COVID hypertensive patients, urinary nephrin was tightly linked to endothelial-hemodynamic abnormalities and renal functional reserve. These findings are consistent with the concept of long COVID as a state of chronic endothelial dysfunction, which in the hypertensive kidney may accelerate progression to chronic kidney disease. They support consideration of podocyte- and endothelial-derived biomarkers, in addition to renal functional reserve, in the post-COVID evaluation of hypertensive patients and suggest a patient population in which nephroprotective intervention may need to start earlier and be more extensive than the standard of care.”😧 ‼️So, prior COVID-19 inflicts lasting, partially treatment-resistant podocyte and endothelial damage in hypertensive kidneys, eroding renal reserve and accelerating chronic kidney disease risk even with standard care. COVID-19 is not “over” after acute recovery, it silently primes vulnerable patients for faster renal decline(= L0ngC0vid). Reinfections won't help either!! #AvoidSars2 #AvoidReinfections #ProtectYourKidneys mdpi.com/2673-8112/6/6/…

It seems only a very small - tiny - number of people can see / acknowledge what the Covid pandemic is doing to population health. What do we do with that knowledge when no one wants to listen to us / hear it? Is the truth even true if nobody acknowledges it?

💙 EPISODE 2 | 1 JULY 2026 “I woke up and the world was half-gone.” Alan shares the terrifying moment he woke to discover he’d gone blind due to #LongCovid .Vicki speaks honestly about the transition from wife to carer Real Stories. Raw Truths. Stronger Together 💙 #Covid19

I don't know why I didn't think of this before! The local paper is automatically delivered free to thousands of people in my community. Since it landed on everyone's doormats I've had about ten people wave in the street and holler, " hey, saw your article!" 1/