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longcovidsos.bsky.social
Long Covid SOS
@longcovidsos.bsky.social
2.6K followers 140 following 250 posts
UK based charity advocating for those impacted by #LongCovid Recognition - Research - Rehabilitation www.longcovidsos.org [email protected] Charity reg no 1199120
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · Mar 17
We always take a short pause on social media posts after #LongCovidAwarenessDay to let our volunteers, who all have #LongCovid, recover from a very busy day.

After a very difficult week, we’ll be taking a slightly longer break.

We’ll be quieter for a bit & loudly advocating again soon.
Alt text A tribute image with a background of an ocean wave in deep blue and white tones. A rounded rectangular overlay contains white text that reads: A Pause to Honour Ondine Sherwood “We’re heartbroken by the loss of our dear friend. Ondine’s unwavering commitment to improving the lives of people with Long Covid, and the way she always encouraged our close-knit team to do our best, has left a lasting impact on our hearts and the community. In this time of shock and grief, we’re taking a short pause to reflect on her life and the incredible dedication she showed. It’s a chance for us to honour her memory and gather the strength to keep going with the work she cared so deeply about. Thank you for your support. We’ll be back soon, determined to carry on Ondine’s legacy—just as she would have wanted.” At the bottom right corner, the Long Covid SOS logo is displayed in white.
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · 5d
Of course vaccination is an additional helpful barrier to severe initial and additional ongoing symptoms, but it is not easily and immediately accessible for most people in the UK as opposed to these immediate actions that anyone can take… we still support vaccination as a preventative measure in LC
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · 5d
2/2:

🛟 wear the best mask you can
🛟 stay home and isolate if ill
🛟 test if you have symptoms
🛟 ventilate or meet outside

Visit our website to learn more, sign up for our newsletter, & donate so we can continue our vital work: longcovidsos.org

Please share & stay safe
Long Covid SOS Charity | Recognition Research Rehabilitation
Long Covid SOS is the voice of the thousands of Long Covid sufferers in the UK. We are throwing a lifeline to all those who are living with the debilitating impact of Covid-19: Long Covid
longcovidsos.org
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · 5d
Covid infections are climbing again. the only way to prevent #LongCovid is to avoid catching Covid.

There is no cure for Long Covid and repeated infections can make LC worse. Protect yourself & others by reducing your risk of infection. 1/2

Longcovidsos.org
Long Covid SOS infographic titled “The only way to prevent Long Covid is to avoid Covid.” Five teal boxes with orange warning-style icons: mask (N95), house, face with thermometer, ventilation fan, and crossed-out medical cross. Messages: wear a good mask, isolate if ill, test with symptoms, ventilate or meet outside, and remember Long Covid has no cure. Footer: website link and Long Covid SOS logo.
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · 7d
October is #DysautonomiaAwarenessMonth

For many with #LongCovid, dysautonomia means daily struggles with dizziness, palpitations, fatigue & more

We need research, support & compassion
Let’s #MakeNoiseForTurquoise this October

#POTS #Dysautonomia #invisibleillness
Turquoise background with overlapping blue circles. In the centre, a simple illustration of a person with turquoise hair. Text around the person reads: “Dysautonomia Awareness Month.” Circles highlight symptoms: gastrointestinal issues, PoTS, heart palpitations, fatigue, shortness of breath, dizziness, cognitive issues, temperature dysregulation. Fainter circles in the background say and many many many more Long Covid SOS logo at the bottom left in white
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 8d
📣 1/4. Paper out from the UK’s LOCOMOTION study on incidence of #LongCovid diagnosis.
 
🚩 Huge under-recording of Long Covid in primary healthcare records!
 
Big thank you to our Members & co-authors @nikki-s.bsky.social & @ruairidhm.bsky.social for their hard work🙏

Link to paper on below 🧵 ⬇️
Screenshot of research paper title and authors. Header says Health Expectations Open Access An International Journal of Public Participation in Health Care and Health Policy. Below this it says Original Article Open Access. The title of the paper is Understanding the Clinical Characteristics and Timeliness of Diagnosis for Patients Diagnosed With Long Covid: A Retrospective Observational Cohort Study From North West London. The list of authors reads Denys Prociuk, Jonathan Clarke, Nikki Smith, Ruairidh Milne, Cassie Lee, Simon de Lusignan, Ghazala Mir, Johannes De Kock, Erik Mayer, Brendan C. Delaney, LOCOMOTION Consortium. It is dated as First Published on 25 September 2025. The reference is https://doi.org/10.1111/hex.70429.
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · 13d
A reminder for anyone reading that exercise is usually contraindicated for anyone with PEM/PESE; and screening for exertional intolerance should be undertaken with expert advice. We recommend resources from @longcovidphysio.bsky.social for finding out more…
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · 13d
We're at a turning point. Since losing Co-Founder Ondine Sherwood in March ‘25, we need your help to continue our vital work. We’ve launched a funding appeal to hire our first paid team member to keep fighting for those with #LongCovid. Can you help secure our future?
Donate today: shorturl.at/J5aan
Orange background with teal abstract shapes. White bold text reads: “We need your help to keep fighting for those with Long Covid.” At the bottom is the Long Covid SOS logo.
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · 15d
📣Your voice matters. Help shape our future - what brought you to Long Covid SOS? What matters to you now?

Just two minutes could help shape our future:

form.typeform.com/to/WKRgCwn7
Four people sit on chairs against a green wall, each holding a colourful paper speech bubble in front of their face. The bubbles spell out the phrase “Help shape our future.” Above them, a large white speech bubble with the Long Covid SOS logo reads “Your voice matters!” At the bottom, text says “2 minutes to share your thoughts”
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · 20d
Thank you for being part of the Long Covid SOS community. A volunteer-led charity founded by people with #LongCovid, we've been fighting for recognition, research & real support since day one. 4 years on our mission is more vital than ever.

Follow us and watch this space for news & updates…
A gradient teal to dark green background with white text in the centre that reads: “We won’t let those with Long Covid be left behind.” Beneath this, the Long Covid SOS logo appears with the tagline “a lifeline since day one.”
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 28d
1/4 This morning, the UK Covid-19 Inquiry opened Module 9: Economic Response, looking at how government decisions in the early years of the pandemic affected people’s lives. Dr Lucy Moore and Nigel Rothband, Chairs of @longcovidsos.bsky.social and Long Covid Support, were present.

🧵👇
Two people stand in front of white building either side of a blue sign. On the left is a man with glasses in a grey suit. On the right is a woman with warm brown short hair wearing a grey coat and navy trousers. The blue sign says 'UK COVID-19 INQUIRY. Hearing centre'
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · Jun 19
Our friend Ondine was a powerful advocate for all with #LongCovid.
Working with her in various arenas was a privilege, including with the NHS Long Covid Taskforce, Covid Inquiry, with Parliamentarians & policy makers. She spoke truth to power & championed the hidden. We miss you.
longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · Jun 19
www.theguardian.com/society/2025...
Ondine Sherwood obituary
Other lives: Founder of a group campaigning for the recognition of Long Covid
www.theguardian.com
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daltmann.bsky.social
Prof Danny Altmann @daltmann.bsky.social · Jun 19
www.theguardian.com/society/2025...
Ondine did such a huge job to get recognition for all with Long Covid👇
Ondine Sherwood obituary
Other lives: Founder of a group campaigning for the recognition of Long Covid
www.theguardian.com
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · Jun 19
www.theguardian.com/society/2025...
Ondine Sherwood obituary
Other lives: Founder of a group campaigning for the recognition of Long Covid
www.theguardian.com
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longcovidkids.bsky.social
Long Covid Kids @longcovidkids.bsky.social · May 27
‘Results of this cohort study suggest that symptom patterns were distinguishable across infants/toddlers and preschool-aged children, and from previously studied older children and adults.’

jamanetwork.com/journals/jam...

#PaediatricLongCovid #LongCovidKids #Childhood #RECOVER
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putrinolab.bsky.social
Boo-trino Lab @putrinolab.bsky.social · May 7
Again for those in the back:
👏🏼 PEM 👏🏼 is 👏🏼 NOT 👏🏼 deconditioning

Symptoms associated with effort expenditure in #LongCOVID, #MECFS and other energy limiting illnesses are physiological, not “preferential”

Thanks to @RobWust for this incredible work.

www.medrxiv.org/content/10.1...
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest
Patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a reduced exercise capacity, skeletal muscle abnormalities and post-exertional malaise (PEM), where...
www.medrxiv.org
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longcovidkids.bsky.social
Long Covid Kids @longcovidkids.bsky.social · May 7
Skeletal muscle changes in #LongCovid & #MECFS are different to those resulting from inactivity.
A useful thread on this new research.
Please share with anyone who may be interested or
find this helpful in their own advocacy.
threadreaderapp.com/thread/19198...
#LongCovidKids #LCAndMe #SevereME
A screenshot of the research paper 'Skeletal muscle changes in #LongCovid & #MECFS are different to those resulting from inactivity'. A preprint on medRxiv.
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ralfwittenbrink.bsky.social
Ralf Wittenbrink @ralfwittenbrink.bsky.social · May 6
wiesen auf:

➡️ Mitochondriale Dysfunktion
➡️ Veränderte Muskelfaserzusammensetzung
➡️ Veränderte Kapillarversorgung

Diese Veränderungen konnten bei gesunden Personen, die strenger Bettruhe unterworfen waren, nicht repliziert werden!

Danke 🙏🏼 Rob Wüst
Screenshot Rob Wüst @RobWust THREAD: Skeletal Muscle Alterations in Long COVID and ME/CFS 1/ Study Overview We studied whether skeletal muscle changes in Long COVID and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) patients are due to inactivity or distinct pathological processes. 21:50 • 06.05.25 • 6,6K Mal angezeigt Both Long COVID and ME/CFS patients exhibited: Mitochondrial dysfunction Altered muscle fiber composition Altered capillary supply These changes were not replicated in healthy individuals subjected to strict bed rest (done with ESA and NASA). Methodology The study involved skeletal muscle biopsies and assessments of whole body exercise responses, comparing: -Long COVID patients -ME/CFS patients -Healthy controls before and after bed rest Findings suggest unique muscle pathology in Long COVID and ME/CFS. Conclusions Understanding these distinct muscle changes is crucial for developing effective treatments for Long COVID and ME/CFS patients, moving beyond the inaccurate recommendations to simply increase physical activity.
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longcovidkids.bsky.social
Long Covid Kids @longcovidkids.bsky.social · Apr 12
🔺Symptom free infections can have lasting impacts.

🔺Prevention is 🔑 #CleanAir, masks, vaccines, staying home when sick all help.

🔺Long-term monitoring strategies needed.

@ashleydaltonmp.bsky.social
@longcovidsupport.bsky.social
@longcovidsos.bsky.social

www.nature.com/articles/s41...
Cardiovascular post-acute sequelae of SARS-CoV-2 in children and adolescents: cohort study using electronic health records - Nature Communications
Post-acute sequelae of SARS-CoV-2 infection affecting the cardiovascular system have been reported, but evidence in young people is limited. Here, the authors quantify the incidence of a range of outc...
www.nature.com
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davidjoffe64.bsky.social
Dr David Joffe MB BS(Hons), PhD, FRACP @davidjoffe64.bsky.social · Apr 7
Long Covid is very Long

www.thelancet.com/journals/lan...
Health outcomes up to 3 years and post-exertional malaise in patients after hospitalization for COVID-19: a multicentre prospective cohort study (CO-FLOW)
Many health problems persisted up to 3 years post-discharge, with self-reported fatigue and cognitive problems worsening in the third year. PEM was common, and linked to a more severe phenotype of lon...
www.thelancet.com
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kerstinsailer.bsky.social
Kerstin Sailer @kerstinsailer.bsky.social · Apr 3
An opportunity to fund research into #LongCovid?

cc @daltmann.bsky.social @binitakane.bsky.social @longcovidsos.bsky.social
snsf.ch
Swiss National Science Foundation (SNSF) @snsf.ch · Apr 3
Call launched with the United Kingdom - The SNSF and the National Institute for Health and Care Research are funding clinical trials for the diagnosis, prevention and treatment of diseases. Outline applications must be submitted by 9 September 2025.

buff.ly/YRV8QcB
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loscharlos.bsky.social
loscharlos @loscharlos.bsky.social · Apr 1
Great piece in @washingtonpost.com:

“The risk of #LongCovid remains:

@erictopol.bsky.social.. said he knows people who have been infected within the last three to four months who have long covid. ‘It’s nonstop. People are still getting it,’ he said.”
The risk of long covid remains 
Eric Topol, a professor of translational medicine and the executive vice president of Scripps Research, said he knows people who have been infected within the last three to four months who have long covid. “It’s nonstop. People are still getting it,” he said.
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seekingboston.bsky.social
Seeking Boston Marathon @seekingboston.bsky.social · Mar 30
"Long Covid turns your world upside down"
@longcovidsos.bsky.social
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longcovidphysio.bsky.social
Long COVID Physio @longcovidphysio.bsky.social · Mar 29
#CROI is the Conference on Retroviruses and Opportunistic Infections

This year #CROI2025 was in San Francisco, USA. Data on #LongCOVID was presented.

So what was the latest science for the field of infection associated chronic conditions?

A thread 🧵
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elhopkins.bsky.social
Esther @elhopkins.bsky.social · Mar 26
inews.co.uk/news/health/...
The new LP covid variant is now making up about 60% of cases, no doubt due to lack of availability of vaccines and now we all need an update but UKHSA has taken them away from the majority of clinically vulnerable! @teamlabouruk.bsky.social Why? @eddavey.libdems.org.uk
New LP Covid variant accounts for 60% of cases - what it means for future waves
The i Paper asks the experts what the appearance of a  new dominant variant - five years on from the first lockdown - means for future Covid waves
inews.co.uk
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · Mar 26
We’ve signed this letter by @longcovidkids.bsky.social to Wes Streeting & @ashleydaltonmp.bsky.social.
Millions suffer complex chronic illnesses without effective care. And no dedicated #LongCovid research funding from Gov. since 2021. Economic impact is mounting. This can’t go on.
#FundOurFuture
Pages 1 & 2 of Letter on Long Covid Kids headed paper addressed to The Rt Hon Wes Streeting MP Secretary of State for Health and Social Care. Ashley Dalton MP Parliamentary Under-Secretary of State for Public Health and Prevention Department of Health and Social Care. Subject: Invest in Long Covid & M.E. Urgent Action Needed to Stop Clinic Closures & to Fund Improved Clinical Care and Research. Text includes: We, the undersigned organisations, charities, and individuals - alongside more than 13,000 people who have signed our petition - are calling for urgent action to support the millions living with Long Covid and M.E. This includes over 100,000 children affected by Long Covid in England and Scotland, and many more living with M.E., PoTS, and other related conditions. Long Covid is part of a wider group of post-viral and immune-mediated conditions - including M.E./CFS, PoTS, and others - that sit within a spectrum of complex, often overlapping illnesses. Paediatric Long Covid is a newly recognised childhood disease, emerging since 2020, which demands urgent recognition, research, and individualised care. This is not just a health crisis, it is an escalating economic and social emergency that affects children, families, and the wider workforce. This letter aligns directly with the NHS 10-Year Plan launched in 2024, which aims to overhaul healthcare and improve access to treatment, especially for those with complex and chronic conditions. Ensuring adequate support for people with Long Covid and M.E. must be a key part of that strategy, with a focus on improving patient outcomes, embedding robust data collection, and continuously evaluating the effectiveness of care and services. Pages 2 and 3 of letter include: We Need Immediate Action. We urge the government to commit to the following: 1. Develop a long-term strategy to fund biomedical research, treatment, and monitor the wider impact of Long Covid and M.E. in adults and children, informed by lived experience 2. Stop clinic closures and commit to long-term, effective care, support & treatment for Long Covid, M.E. & overlapping conditions, grounded in robust biomedical research and co-designed with patients. NHS England has allocated funding to ICBs, but without accountability, services are being defunded despite ongoing need. 3. Train doctors & healthcare professionals to expand & sustain specialist services. It is signed by several people & organisations including Sammie McFarland CEO & Founder, Long Covid Kids. Professor Mark Faghy Professor in Clinical Exercise Science, University of Derby Trustee, Long Covid Kids. The list of organisations includes Long Covid Support. Last page of letter with the rest of individual signatories and list of references.
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