All about #LongCovid paid work/not being in paid work #Benefits including energy limiting conditions: Dr Clare Rayner, Dr Jenny Ceolta-Smith and Pen Scribbler

Joined October 2023
9 Photos and videos
1/ We will add here links to resources for workers and stakeholders on #WorkingWithLongCovid some we were involved in. These are mainly U.K. but some have transferability to other countries. Please share and tag us to other resources 🐝 #LongCovid
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I really miss hosting #LongCovid and #MECFS Spaces every night and talking to so many people from the community. I got a chance to talk to so many amazing people, some of whom I’ve lost contact with completely (my profile got deactivated). One day I hope to get back to it. 😢
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Fewer COVID infections = lower lifetime cardiovascular risk. A compelling thread. 👇
The long-term cardiovascular risks of SARSCoV2 infection and reinfections Your heart is under silent, cumulative attack from SARSCoV2, and every reinfection can reload/worsen the damage. Here a personal recap of 10 important studies from the last 2 years showing exactly how this virus and its reinfections can/may shape (and shorten) your cardiovascular future. Evidence is clear, long-term, and growing. Print and show your Cardiologist. Let’s connect the dots… 1. Immunothrombosis multi-omics study: 3 months after hospitalisation, long COVID patients still have blood biologically “clot-ready” with persistent endothelial activation and prothrombotic signalling. x.com/HarrySpoelstra/status/… 2. IL-6 & SAA 6-year study: Higher acute-phase IL-6 and SAA levels independently predict cardiovascular events and death up to 6 years later, the initial inflammatory storm leaves a lasting CV mark. x.com/HarrySpoelstra/status/… 3. MIS-C long-term outcomes: Up to 4.5 years later, MIS-C raises cardiovascular disease risk 14× and hypertension 9× in children, with risks still accumulating. x.com/HarrySpoelstra/status/… 4. Viruses & cardiac disease review: SARS-CoV-2 stands out for direct cardiomyocyte invasion explosive damage relentless accumulation of risk with every reinfection. x.com/HarrySpoelstra/status/… 5. Mayo PET long COVID study: Persistent cerebral hypometabolism in fatigue/PEM patients still detectable up to 2 years post-infection. x.com/HarrySpoelstra/status/… 6. Reinfection CV outcomes summary: Reinfections worsen cumulative heart damage, arrhythmias, thrombosis, stroke risk and long COVID cardiovascular symptoms. x.com/HarrySpoelstra/status/… 7. Youth reinfection & long COVID study: Reinfection roughly doubles PASC risk, with myocarditis up to 3.6× higher, heart disease ~2× higher and increased thromboembolism. x.com/HarrySpoelstra/status/… 8. Mild infection reinfection risk: Even mild cases trigger lasting endothelial damage and prothrombotic state (1.5–2× long-term CV risk), each reinfection compounds the burden. x.com/HarrySpoelstra/status/… 9 Mitochondrial dysfunction in long COVID: Persistent mitochondrial dysfunction and suppressed oxidative phosphorylation remain in long COVID, pointing to durable multi-organ impact. x.com/HarrySpoelstra/status/… 10. Cumulative reinfection impact on future CV health: Reinfection stacks additional damage on prior endothelial injury and inflammation, increasing lifetime risk of heart failure, arrhythmias, thrombosis and accelerated cardiovascular disease. x.com/HarrySpoelstra/status/… 11. Extra, my earlier general reminder post on this exact theme: x.com/HarrySpoelstra/status/… ‼️Overall convergence across the studies: Immunothrombosis, acute inflammation markers, direct invasion, endothelial damage, and mitochondrial issues create lasting CV vulnerability that reinfections can keep reloading. #L0ngC0vid The pattern is very clear. Fewer infections = lower lifetime cardiovascular risk. You only have one heart. Protect it! #AvoidSars2 #AvoidReinfections #CleanAir #VaccineUpdated
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I'm joining the call for up-to-date scientific representation and meaningful patient engagement in #LongCovid and #ME. I'm proud to support the Open Letter to @rcpsych, backed by 58 orgs and 1200 signatories. #HearOurVoices #RCPsychIC 📩 tinyurl.com/46enh82n
I'm joining the call for up-to-date scientific representation and meaningful patient engagement in #LongCovid and #ME. I'm proud to support the Open Letter to @rcpsych, backed by 58 orgs and 1200 signatories. #HearOurVoices #RCPsychIC 📩 tinyurl.com/46enh82n
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Meanwhile in the real world: 21,000 disabled children are growing up homeless or in temporary accommodation in England. bigissue.com/news/housing/di… Something to think about while pretending to care about child safety and deciding what disability welfare to cut next
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The long-term cardiovascular risks of SARSCoV2 infection and reinfections Your heart is under silent, cumulative attack from SARSCoV2, and every reinfection can reload/worsen the damage. Here a personal recap of 10 important studies from the last 2 years showing exactly how this virus and its reinfections can/may shape (and shorten) your cardiovascular future. Evidence is clear, long-term, and growing. Print and show your Cardiologist. Let’s connect the dots… 1. Immunothrombosis multi-omics study: 3 months after hospitalisation, long COVID patients still have blood biologically “clot-ready” with persistent endothelial activation and prothrombotic signalling. x.com/HarrySpoelstra/status/… 2. IL-6 & SAA 6-year study: Higher acute-phase IL-6 and SAA levels independently predict cardiovascular events and death up to 6 years later, the initial inflammatory storm leaves a lasting CV mark. x.com/HarrySpoelstra/status/… 3. MIS-C long-term outcomes: Up to 4.5 years later, MIS-C raises cardiovascular disease risk 14× and hypertension 9× in children, with risks still accumulating. x.com/HarrySpoelstra/status/… 4. Viruses & cardiac disease review: SARS-CoV-2 stands out for direct cardiomyocyte invasion explosive damage relentless accumulation of risk with every reinfection. x.com/HarrySpoelstra/status/… 5. Mayo PET long COVID study: Persistent cerebral hypometabolism in fatigue/PEM patients still detectable up to 2 years post-infection. x.com/HarrySpoelstra/status/… 6. Reinfection CV outcomes summary: Reinfections worsen cumulative heart damage, arrhythmias, thrombosis, stroke risk and long COVID cardiovascular symptoms. x.com/HarrySpoelstra/status/… 7. Youth reinfection & long COVID study: Reinfection roughly doubles PASC risk, with myocarditis up to 3.6× higher, heart disease ~2× higher and increased thromboembolism. x.com/HarrySpoelstra/status/… 8. Mild infection reinfection risk: Even mild cases trigger lasting endothelial damage and prothrombotic state (1.5–2× long-term CV risk), each reinfection compounds the burden. x.com/HarrySpoelstra/status/… 9 Mitochondrial dysfunction in long COVID: Persistent mitochondrial dysfunction and suppressed oxidative phosphorylation remain in long COVID, pointing to durable multi-organ impact. x.com/HarrySpoelstra/status/… 10. Cumulative reinfection impact on future CV health: Reinfection stacks additional damage on prior endothelial injury and inflammation, increasing lifetime risk of heart failure, arrhythmias, thrombosis and accelerated cardiovascular disease. x.com/HarrySpoelstra/status/… 11. Extra, my earlier general reminder post on this exact theme: x.com/HarrySpoelstra/status/… ‼️Overall convergence across the studies: Immunothrombosis, acute inflammation markers, direct invasion, endothelial damage, and mitochondrial issues create lasting CV vulnerability that reinfections can keep reloading. #L0ngC0vid The pattern is very clear. Fewer infections = lower lifetime cardiovascular risk. You only have one heart. Protect it! #AvoidSars2 #AvoidReinfections #CleanAir #VaccineUpdated
🚨GENERAL REMINDER: YOU ONLY HAVE ONE HEART, TREAT IT WITH RESPECT! Reinfections aren't harmless "boosters", they stack the deck against your HEART, turning one hit into compounding long-term cardiovascular risks. ➡️3 important and recent articles (from 2025–2026) providing the strong evidence that SARS-CoV-2 reinfections increase risks of long COVID, including cardiovascular complications like myocarditis, arrhythmias, heart disease, thromboembolism, and related issues( There're more!!): ➡️1. Long COVID associated with SARS-CoV-2 reinfection among children and adolescents in the omicron era (RECOVER-EHR): a retrospective cohort study. Published in The Lancet Infectious Diseases (2026). This large retrospective study of nearly 500,000 youth found reinfection roughly doubles the risk of long COVID/PASC overall (RR 2.08), with elevated risks for myocarditis (up to 3.6×), arrhythmias, heart disease, thromboembolism, chest pain, and other cardiovascular signs/symptoms, even in vaccinated individuals. thelancet.com/journals/lanin… ➡️2. Long COVID Syndrome Prevalence in 2025 in an Integral Healthcare Consortium in the Metropolitan Area of Barcelona: Persistent and Transient Symptoms. Published in Vaccines (MDPI, 2025). This real-world study showed long COVID prevalence was 3–10 times higher in people with three or more infections vs. one, alongside a post-pandemic doubling of thrombotic events (cardiovascular-related clots) across populations, linking reinfections to worsened persistent symptoms including cardiovascular sequelae. pmc.ncbi.nlm.nih.gov/article… ➡️3. Cardiovascular damage and comorbidities related to long COVID: pathomechanisms, prevention, and therapy. Published in Physiological Research (2025). This review explicitly states reinfections can trigger de novo long COVID or exacerbate its severity, contributing to persistent cardiovascular risks like heart failure, dysrhythmias, myocardial infarction, and stroke, building on evidence of cumulative damage from repeat SARS-CoV-2 exposures. pmc.ncbi.nlm.nih.gov/article… ➡️So: 1. Reinfection worsens endothelial dysfunction (already impaired from prior COVID), raising cardiac event risks, especially in those with pre-existing atherosclerosis or CV factors, 2. Repeat infections cumulatively boost long COVID odds, including cardiovascular manifestations (e.g, myocarditis, arrhythmias, heart conditions 3× higher in some cohorts), 3. Studies show 1.35–2× higher long COVID risk after reinfection vs. single infection. One large pediatric analysis found ~2× higher PASC (including heart-related) post-reinfection in Omicron era. 4. Experts note each infection adds damage, accelerating vascular aging, plaque issues, and overall CV burden, even mild cases. The reminder: Reinfections aren't harmless "boosters"—they stack the deck against your heart, turning one hit into compounding long-term cardiovascular risks. YOU ONLY HAVE ONE HEART, TREAT IT WITH RESPECT! PLEASE: #AVOIDREINFECTIONS #AVOIDSARS2 #HEARTHEALTH #CLEANAIR
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It would be nice, wouldn't it, to go online, open up a paper or turn on the TV for one day in the UK, and not see some talking head attack #disabled people for needing #SocialSecurity that is their basic human right, and demanding cuts. It would be a decent society to wake up in.
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Fancy a longer read about our Open Letter concerning #RCPsychIC ? Signed by 58 charities & orgs & 1200 patients, clinicians, researchers, carers (9% Drs) 👀📩 Letter download 👇️ longcovidadvoc.com/post/open…
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We are joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. We are proud to support the Open Letter to RCPsych, backed by 58 orgs (including us) & 1200 signatories. #HearOurVoices #RCPsychIC
People with Long Covid and ME deserve excellent supportive mental health care. That is why we are reaching out to #RCPsychIC to include current patient expertise in future policy. What can be done to move forward? Why did 58 charities & orgs sign an open letter with concerns?👇️ #HearOurVoices 🔄
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1/2: Long Covid Advocacy are campaigning across social media for concerns about the framing of Long Covid at the Royal College of Psychiatrists Congress to be heard today, on the opening day of the Congress. If you'd like to support you can reshare their graphics, and copy the following text if you wish to repost:  "I'm joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories.  Open Letter: tinyurl.com/5cnkrutj #HearOurVoices #RCPsychIC"
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And we are trending in the UK with #RCPsychIC Well done everyone! 🥳
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drives these physiological responses. In our manual for complex chronic illness care (coresinai.org/manual), we talk about a variety of symptom drivers in these diagnoses. Not everyone has all the drivers: some people have just one, some people have many. This is why we 8/
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Long Covid in healthcare workers can affect day-to-day functioning, not just symptoms. This has implications for work capacity and return-to-work expectations in the NHS. Check out our weekly research summaries on our website: shh-uk.org/functional-impact…
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Why did 58 orgs & 1200 individuals (9% Drs) sign an Open Letter asking the Royal College for better Long Covid representation at Congress? #HearOurVoices #RCPsychIC 🔄 👀 👇️
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Selon les dernières données de l’OCDE, cette pathologie concerne des millions de personnes en âge de travailler, entraînant une baisse de productivité, de l’absentéisme et, pour 1 travailleur atteint sur 5, une véritable rupture professionnelle.
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📢 Le Covid Long au travail : un défi invisible, une responsabilité collective. Connaissez-vous l’impact réel du #CovidLong sur le monde professionnel ? 💼✨ #LongCovidAwareness 👇
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📱You can save and share this leaflet on MON 15th to bring awareness to the open letter signed by 58 orgs & 1200 individuals about the communities legitimate concerns about the framing of Long Covid at the #RCPsychIC #socialmediacampaign #HearOurVoices
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🌙 Nuit du Handicap Une soirée forte, remplie de rencontres, d’émotions et de partage. En ce 15 du mois, journée de mobilisation internationale du #LongCovidAwareness, nous avons porté cette sensibilisation à travers notre stand. 🧵👇 #ActionCovidLong @LCawarenessInt
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This is from Dr Elke Hausmann (on 🦋) We are sharing her important points here about PEM to #RCPsychIC : "Dear Psychiatrists, Please listen to us #HearOurVoices Yours, #LongCovid
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I'm joining the call for up-to-date scientific representation and meaningful patient engagement in #LongCovid and #ME. I'm proud to support the Open Letter to @rcpsych, backed by 58 orgs and 1200 signatories. #HearOurVoices #RCPsychIC 📩 tinyurl.com/46enh82n
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