@longcovidsos.bsky.social
UK based charity advocating for those impacted by #LongCovid Recognition - Research - Rehabilitation www.longcovidsos.org info@longcovidsos.org Charity reg no 1199120
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
We're inviting people who've engaged with the SLCC webtool (long-covid-care.org.uk) to take part in its evaluation to help us improve the tool &make it more relevant& helpful to pw #LongCovid. This involves a short survey(10-15m)& potentially interview(if interested)
For more info: shorturl.at/ADoh0
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
03.10.2025 20:15 — 👍 1 🔁 0 💬 0 📌 0
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 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.
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
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
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
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.
📣 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 🧵 ⬇️
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…
25.09.2025 15:55 — 👍 4 🔁 3 💬 2 📌 0
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.
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
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”
📣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
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.”
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…
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'
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.
🧵👇
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.
www.theguardian.com/society/2025...
Ondine did such a huge job to get recognition for all with Long Covid👇
‘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
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...
A screenshot of the research paper 'Skeletal muscle changes in #LongCovid & #MECFS are different to those resulting from inactivity'. A preprint on medRxiv.
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
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.
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
🔺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...
Long Covid is very Long
www.thelancet.com/journals/lan...
An opportunity to fund research into #LongCovid?
cc @daltmann.bsky.social @binitakane.bsky.social @longcovidsos.bsky.social
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.
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.”
"Long Covid turns your world upside down"
@longcovidsos.bsky.social
#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 🧵
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
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
Jennifer Nuzzo, an epidemiologist and director of the Pandemic Center at Brown University, calls the end of COVID-19 research a “real slap in the face” to the countless patients dealing with long-term health issues from COVID infections.
26.03.2025 10:19 — 👍 14 🔁 7 💬 0 📌 0Just found him. Sorry for not tagging you Dr Amir!
bsky.app/profile/dram...
Graphic promoting Long Covid Scotland’s public consultation response campaign. The background features overlapping cut-out silhouettes of people in pastel colours, some with virus-like symbols. Bold white text reads: “Why It's Important You Respond To The Public Consultation.” Smaller text at the bottom says: “Your voice matters. Read our article to find out why, and how, to respond.”
📣Later this year The Scottish Government is running a public consultation on Long Covid.
This is your chance to be heard.
👉 Read our short article to find out why this matters and how to respond once it's live.
#LongCovidScotland #LongCovid
www.longcovid.scot/blog/pub...
