Long Covid SOS
@longcovidsos.bsky.social
UK based charity advocating for those impacted by #LongCovid Recognition - Research - Rights www.longcovidsos.org info@longcovidsos.org Charity reg no 1199120
🧵On @thenewsagents.co.uk yesterday, school closures and the lab leak theory were offered as two examples of legitimate questions that were hard to ask. Both have in fact been asked constantly since 2020. But here's a thread on why I think they were wrong and dangerous on school closures 1/12
📢 Participants needed for Long COVID research I'm helping an MSc student recruit adults living with Long COVID for an important study exploring experiences of rehabilitation and recovery. 🔗 app.onlinesurveys.jisc.ac.uk/s/lboro/long...
Factors Influencing Experiences of Rehabilitation Among Adults with Long COVID: An Explanatory Sequential Mixed-Methods Study - Online Surveys | Online surveys
Online surveys is a powerful, easy to use tool for creating online surveys. Run by Jisc, Online surveys is used by over 300 different organisations in the UK...
app.onlinesurveys.jisc.ac.uk
Our Chair Sarah Barley-McMullen was invited to discuss her experiences with Healthcare on the podcast ‘Leading Improvement in Health and Care: What does NHS England's Quality Strategy mean in practice?’ Read more and 🔗 to listen to the podcast here: www.longcovidsos.org/post/leading... #LongCovid
www.nature.com/articles/s41... Researchers compared people living with #LongCovid and #ME/CFS to healthy volunteers after 60 days of strict bed rest Thank you to everyone working to uncover the biology of #postviralillnesses and help ensure these complex diseases are recognised and understood
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest - Nature Communications
Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and ME/CFS patients have distinct skeletal muscle changes that ...
nature.com
23rd July, the iPaper published an article on #ME/CFS and #LongCovid titled “75 people claim to be cured of chronic fatigue and long Covid. Here’s how” Read our statement on it at www.longcovidsos.org/post/our-pos...
Our position on the iPaper article
Yesterday, 23rd July, the iPaper published an article on ME/CFS and Long Covid titled "75 people claim to be cured of chronic fatigue and long Covid. Here's how"
longcovidsos.org
www.camh.ca/en/camh-news... Interesting new #LongCovid research has identified measurable changes in the brain’s dopamine system PET imaging found lower dopamine markers associated with fatigue & cognitive issues A small, early study but more evidence of measurable biological changes in Long Covid
New Study Provides First Evidence of Dopamine System Injury in the Brain of Long COVID Patients
Findings have important implications for the pathophysiology of key COVID symptoms and suggest new potential avenues for treatment
camh.ca
Please join us in giving Dr Melissa Heightman a very warm welcome as our new Trustee. Dr Heightman is a Consultant Physician and Clinical Lead for the Post Infection Condition and Post Covid Service at UCLH where she leads the care of people living with #LongCovid and post-viral illness.
Heute veröffentlicht 🔔 Die vollständige Long-COVID-Videoserie auf #Deutsch @longcovidde.bsky.social @fisiocamera.bsky.social Zu den neuen Episoden gehören: ⚓️ Auswirkungen von #LongCOVID auf den Alltag 👷♀️ Sichere Long-COVID-Rehabilitation ⚖️ #Pacing 🏃♂️ Bewegung longcovid.physio/german-long-...
Long COVID Videoserie (German) — Long COVID Physio
Long COVID Physio hat sich mit FisioCamera zusammengetan, um eine Reihe von Lehrvideos über Long COVID bereitzustellen
longcovid.physio
⭐Job opportunity for UK-based PhD student/recent grad⭐ @nisreenalwan.bsky.social @dalupton.bsky.social Nina Smyth & I are recruiting a Research Assistant for our project on improving healthcare support for Long Covid patients. To apply (deadline 19 June): portal.unitemps.com/Search/JobDe...
Unitemps
portal.unitemps.com
OUR NEW BMJ editorial: Andes virus should reset WHO’s default approach to airborne risk. 🧵 1/ For severe pathogens with person-to-person transmission, the starting point should be precautionary airborne protections — not waiting for definitive proof after spread occurs. www.bmj.com/content/393/...
bmj.com
Today is #MECFS Awareness Day. As a #LongCovid charity, we recognise that a significant proportion of #pwLC - around half, but not all - meet/would meet the diagnostic criteria for ME/CFS. We exist to advocate for everyone with Long Covid, including those who also have an ME/CFS diagnosis. 🧵
We wrote to @rcpsych.bsky.social yesterday asking them to review the platforming of psychologising models of #LongCovid contrary to the significant and growing evidence base demonstrating unequivocally that #pwLC have a biomedical condition.
Long Covid SOS@longcovidsos.bsky.social · 3mo ago#LongCovid is a serious, multi-system biomedical disease. That is why we have written to the Royal College of Psychiatrists to express concern about the continued promotion of psychologising approaches to post-viral illness. Longcovidsos.org/post/rcp-letter
Add your name and ensure that the message is amplified! #LongCovid
Long Covid Advocacy@longcovidadvoc.com · 3mo ago🩵On #MEAwarenessDay we are sending an open letter to @rcpsych.bsky.social calling for alignment with current evidence. Supported by 20 organisations. +35 advocates, clinicians & academics! In democratic spirit we are offering a public sign-on opportunity 🔗👇️ #RCPsychIC #Garner
Today on International ME Awareness Day, we’re calling for better recognition, research and services for people living with ME and Long Covid in Scotland. With £4.5m now allocated by The Scottish Government, the focus must now be on full accountability and delivering real change for patients.
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Long Covid SOS@longcovidsos.bsky.social · 3mo ago#LongCovid is a serious, multi-system biomedical disease. That is why we have written to the Royal College of Psychiatrists to express concern about the continued promotion of psychologising approaches to post-viral illness. Longcovidsos.org/post/rcp-letter
🩵On #MEAwarenessDay we are sending an open letter to @rcpsych.bsky.social calling for alignment with current evidence. Supported by 20 organisations. +35 advocates, clinicians & academics! In democratic spirit we are offering a public sign-on opportunity 🔗👇️ #RCPsychIC #Garner
#LongCovid is a serious, multi-system biomedical disease. That is why we have written to the Royal College of Psychiatrists to express concern about the continued promotion of psychologising approaches to post-viral illness. Longcovidsos.org/post/rcp-letter
Men's Health: 'Millions of People Live With Long COVID. This Researcher Is on a Mission to Find a Cure' 'Six years ago, Dr. Michael Peluso and his team launched a first-of-its-kind long COVID tissue bank and have been working to understand the disease ever since' www.menshealth.com/health/a7113...
Millions of People Live With Long COVID. This Researcher Is on a Mission to Find a Cure.
Six years ago, Dr. Michael Peluso and his team launched a first-of-its-kind long COVID tissue bank. They’ve been working to understand the disease ever since.
menshealth.com
New Nature paper: Long Covid is real, complex and multi-system. Key researchers and lived experience patients in the field of #LongCovid, including our new Chair, highlight urgent need for diagnostics, treatments and more funding! Thank you to everyone involved. www.nature.com/articles/s43...
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID - Communications Medicine
Faghy et al., review the current literature on Long COVID pathophysiology, linking immune dysregulation, viral persistence, and vascular injury to enduring symptoms. They highlight evidence to guide f...
nature.com
I've been waiting for this paper to drop for several months 👏🏻👏🏻😎 The honour of sitting with the grown-ups is seeing the science in its raw form Now peer reviewed and published🏁 @DrMark_Faghy and Team... Bloody FANTASTIC science🏆🏆 Things that aren't "PSYCHOSOMATIC"‼️ doi.org/10.14814/phy...
Impaired peripheral oxygen delivery during submaximal exercise in adults with long COVID
Long COVID (LC) is a multisystem condition that is linked to distinct pathologies including viral persistence, immunological dysfunction, endothelial damage, and mitochondrial dysfunction. To date, l....
doi.org
Long Covid SOS is entering a new chapter led by lived experience Sarah Barley-McMullen is our new Chair, alongside 2 new trustees, strengthening our leadership as we continue to fight for recognition, research & rights #LongCovid Too many people are still unheard, unsupported, and without answers.
Six years of being ignored. Yesterday that changed... Four CVF members set the record straight. Starting with @larawong.bsky.social sharing our official statement: 1/
One month on - have you heard from your MP? Many of you spoke up, shared your stories, and made #LongCovid harder to ignore If you’ve had a response, share it - it may help someone else take the first step If not, follow up. We don’t stop at one message We will not be ignored. #longcovidawareness
Thanks to @lauramcghie.bsky.social for inviting our friend Kim to speak about #LongCovid on BBC Radio 5 Live last night: The interview is 15mins starting at 2:52 www.bbc.co.uk/sounds/play/...
Laura McGhie - 21/03/2026 - BBC Sounds
Laura McGhie with your calls and features through the night.
bbc.co.uk
Congrats to Stanford’s @mathewkiang.com for this beautifully designed paper on unrecognized COVID deaths. As usual, those without access to healthcare are those who suffer unnecessary loss. @stanfordmedicine.bsky.social @stanfordeph.bsky.social #COVID #publichealth
Scientific American@sciam.bsky.social · 5mo agoWe have severely undercounted the number of COVID deaths, scientists say
Today’s Covid-19 Inquiry Module 3 report laid bare serious failures in healthcare and in the response to Long Covid. #LongCovid #CovidInquiry 1/2
The Long Covid group are now calling on the Government and devolved administrations to urgently address the ongoing failures in care. #LongCovid remains a significant public health challenge, affecting millions today with new cases emerging with each new wave. www.longcovidkids.org/post/long-co...
Long Covid Groups call for Urgent Action as Inquiry Report Confirms Widespread and Ongoing Healthcare Failings | Press Release | March 2026
Long Covid groups are now calling on the Government and devolved administrations to urgently address the ongoing failures in care. They warn that Long Covid remains a significant public health challen...
longcovidkids.org
Today the #LongCovid groups call for urgent action in response to the #CovidInquiry Module 3: Healthcare report which confirms widespread and ongoing failings. Longcovidsos.org/post/covidinquiryhealthcarepr
Long Covid groups call for urgent action as Inquiry report confirms widespread and ongoing healthcare failings
Long Covid advocacy groups today responded to the UK Covid-19 Inquiry’s Module 3 report on healthcare systems, saying its findings provide important validation for the experiences of the millions of p...
longcovidsos.org
Today, alongside Long Covid Kids, Long Covid SOS and Long Covid Physio, we release our demands ahead of the release of the UK Covid-19 Inquiry report on Module 3 (due on Thursday 19 March). Read the press release on our website: www.longcovid.org/impact/news/... #CovidInquiry #LongCovid
