From the US Dysautonomia in Long COVID is Prevalent and Could Explain the Frequency of Symptoms www.clinmedres.org/content/clin... Screenshot from latest Science for ME weekly update #LongCovid #dysautonomia #POTS

And Sarah Steven explains the struggles her family went through whilst trying to access antivirals in a broken system. 5/

Dr. Cathy Finnis shared her vulnerable daughter's experience trying to get hold of a vaccine before she started school. She also explains the need to restore the vaccine offer to include all Clinically Vulnerable people. 4/

"The virus didn't disappear. The support did." @rthonwesstreeting.bsky.social promised "an end to sticking-plaster politics" We invite him to meet with us to discuss practical solutions. 2/

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/

#CPET is an objective marker for #PEM in #ME/CFS Compiled by Jørn Tore Haugen, Last revised: January 26th, 2026 Studies of ME patients using two-day CPET (Cardiopulmonary Exercise Test) show that the disease is not caused by exercise phobias, deconditioning or ‘illness beliefs’. Measurements

Listening to @profmarkfaghy.bsky.social present findings - "Simply pushing through or doing more might not be a good idea" #COVIDrehab #LongCovid #MicroClots #Exercise #CPET

I'm working on a story for @thesicktimes.org about RECOVER clinical trial results that have been shared so far (from the VITAL, NEURO, and AUTONOMIC studies), and am looking for people in the #LongCOVID and IACC communities to share what they think of the findings. DM or email me!

Key messages: 📌 Exercise triggers microclot fragmentation in people with Long COVID.  📌 Microclot fragmentation correlates with inflammation and vascular injury markers. 📌 Physiological performance worsens after repeated exertion.

Mark Faghy shares an update on Submaximal exercise-induced changes in microclot and cytokine profiles - shaping what we know about Long COVID rehabilitation. #COVIDrehab

How many doctors struggle on working with #LongCovid, without accommodations or support at work? This article focuses on those doctors who are still able to work, or would be with more support, but some doctors with #LongCovid can’t work at all anymore, even with the best accommodations…

“Trial By Error: How Many Awful Papers Can Trudie Chalder Produce?” By David Tuller @davetuller1.bsky.social (16 April 2026) virology.ws/2026/04/16/t...

Todd Davenport @sunsopeningband.bsky.social summarising his current understanding of PEM - essential reading! #LongCovid #ME open.substack.com/pub/likeanno...

Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.

👏Excellent commentary to @BBCR4Feedback by Helen Gibson, @tedmonroe91.bsky.social & @nickyproctor.bsky.social 🧪 It also shows the power of @DecodeMEstudy in refuting stigmatising, outdated & false views of people like O'Sullivan.

Great rebuttal of Suzanne O‘Sullivan‘s recent comments regarding #LongCovid on the Radical podcast - and the failure to mention #ME www.bbc.co.uk/sounds/play/...

Why we continue to write… Fred Rossi @darthfoo.bsky.social quoted by @davetuller1.bsky.social #LongCovid #ME

Many patients dread going into unsafe A&Es and other healthcare spaces where infection control is lacking - we have learnt: ‚vulnerability‘ often only shows itself in retrospect #LongCovid #ME A cold could kill my daughter - hospital visits feel like a death sentence www.bbc.co.uk/news/article...

🎤 The speaker lineup for the Int. ME/CFS Conference 2025 keeps growing! International experts presenting the latest research on #MECFS and #PostCOVID. 👉 Full speaker list on our website 📅 Register now: https://t.ly/us026

🧪 Now out, a joint effort of patients, clinicians and researchers: "When psychologizing #LongCOVID causes harm" www.frontiersin.org/journals/med...

Das Psychotherapie-Netzwerk ME/CFS hat eine Stellungnahme zum DGPPN-/DGPM-Positionspapier zu #PostCOVID veröffentlicht: wichtige Klarstellungen, aber problematische Grenzverwischungen mit Folgen für Forschung, Versorgung und Patientensicherheit. #MECFS #PEM #NoGET drive.google.com/file/d/1UlBt...

Lotte has lived with #LongCOVID for 6 years. At her worst she spent 22 hrs a day in bed and was unable to hold a conversation. She worries about her future as the Dutch government doesn’t treat it as a priority and not enough is being done to help her take part in society again.

Thanks to our partners, and to Claire Higham for such a clear and thoughtful discussion on ventilation in schools and Long Covid. You can find it on the information section of our YouTube channel along with the full episode. youtu.be/H9-7A_O-voE?...

Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS “This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”. Clip from Hope 4 ME & Fibro NI 2026

Biomarker für thrombotische Endotheliitis bei Long COVID Diese neue Studie stellt eine Methode vor, um Thrombo-Entzündungen zu messen, die zu systemischer thrombotischer Endotheliitis bei Long COVID und anderen postviralen und entzündlichen Erkrankungen im Allgemeinen …

Die Ergebnisse der International #MECFS Conference 2025 wurden in der Fachzeitschrift Autoimmunity Reviews veröffentlicht. 👉 Neue Erkenntnisse zu Krankheitsmechanismen & Therapien bei #MECFS & #LongCovid 🔗 https://mecfs-research.org/conference2025-summary/

Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder. Clip from Hope 4 ME & Fibro NI Collaboration for Change 2026

Letter from @akikohart.bsky.social in Times today. And played a major part in revealing the false claims made by investigators of the #PACEtrial #MEcfs Thanks #AlemMatthees

That‘s the trouble with the world ‚recovery‘ in relation to chronic illness: Here it relates to recovering a sense of identity and meaning while remaining physically ill. The concept may be helpful for ill people, but the language is not. #NotRecovered #LongCovid #ME

On the phone with my sons GP, he's got chronic pain and also fatigue. She suggests physio, so I say "not without ruling out #MECFS because exercise would be dangerous" GP: "No that's been debunked." Me (suppressing rude words): "Source?" GP: "Well I would have to go check..." Me: "Pace trial?"

When would I consider myself ‚recovered‘? When my life is back to how it was pre-Covid. When I can swim, cycle and run again. When I can make plans with friends and expect to keep them. When those plans don’t have to be scaled back for me. When I can work again. When I feel well again. #LongCovid

A case of ‚music industriitis‘? Obviously a definite diagnosis cannot be made from the information given, but the fact that #LongCovid does not even appear as a differential diagnosis is crazy and emblematic of today‘s sad and infuriating state of affairs. www.theguardian.com/music/2026/a...

Looks like that is a huge underestimation based on a very unrealistic model of long covid

#LongCovid #ME

Hunderttausende Long-Covid- und ME/CFS-Kranke sind für unser Gesundheitssystem einschließlich staatlicher Stellen kein Anlass, zeitnah eine medikamentöse Versorgung zu organisieren. Jahre vergehen, das Leid hält an – und die letztlich beschlossene "Liste" ist beschämend. Lesenswerter Kommentar! 👇

I’ve written a short thread responding to Suzanne O’Sullivan’s claim that criticism of her books largely comes from “10 people on social media” highlighting responses from UK ME charities. twitter-thread.com/t/2041098446...

I had to check that fact because it seems so incredible. But yes, England is the only country in the world where the water and sewage system are fully in ‚for profit‘ private hands.

Question from a #LongCovid patient to #ME patients, who have been dealing with this for much longer: how do you manage to keep going with your advocacy work, when you are constantly faced with other voices (who claim to know better than you do) getting promoted, in the media and beyond?

Suzanne O’Sullivan was on the BBC Amol Rajan podcast saying #LongCOVID is psychosomatic for a large proportion of patients. I’ve written a response highlighting a number of problems with this claim on X, which can be viewed via this webpage: twitter-thread.com/t/2040085001...

With Suzanne O’Sullivan claiming a ‘large proportion’ of #LongCOVID is psychosomatic on the Amol Rajan podcast, I’m resharing this clip from 2021 of Dr Xand van Tulleken on BBC Morning Live “You can always find some doctor, some professor to give a quote to a paper saying it’s all psychosomatic…”

Suzanne O‘Sullivan on #LongCovid from about 11 min from the end. My BJGP article is quoted - predictable response from her: ‚oh but Paul Garner‘, and no comeback from the journalist. There is an email address to write to. Link to my article below. www.bbc.com/audio/play/m...

Suzanne O‘Sullivan on #LongCovid from about 11 min from the end. My BJGP article is quoted - predictable response from her: ‚oh but Paul Garner‘, and no comeback from the journalist. There is an email address to write to. Link to my article below. www.bbc.com/audio/play/m...

PEM is the hallmark symptom of #ME and also occurs in patients with #LongCovid who will meet the diagnostic criteria for ME. It is not the same as what patients with MS experience, as this (otherwise good) article suggests. A 2-day Cardiopulmonary Exercise Test (CPET) can show the difference.

1/9 „Der Stellenwert der Psychiatrie in der Versorgung und Forschung von Post-COVID" - so der Titel eines neuen Konsensuspapiers im Nervenarzt. In der Zusammenfassung heißt es: „Abgrenzung zu anderen psychischen Erkrankungen." Damit ist der Referenzrahmen gesetzt. #MECFS #PEM

How many years do you have to be sick and unable to work for, until it is considered that you might not still recover in some undefined future? Is the fact that a small % of people recover from #LongCovid and #ME enough to suggest that everyone can potentially recover?

Really good explanation of Post-Exertional Malaise (PEM), the hallmark symptom of ME/CFS, and why pacing activities is so important. Clip from German TV science program.

A most comprehensive assessment of the current situation around #LongCovid in the UK - highly recommended to anyone who wants to get a better grasp of it. It would be great if it were to reach people who don’t much think about Long Covid now. Do share! podcasts.apple.com/gb/podcast/q...

To mark the end of #LongCovidAwareness month Claire from LCA talks on a special Long Covid edition of @quietriotpod.bsky.social We cover PEM, POTS, ME, History, Hysteria, Ventilation, Clinics, Covid Inquiry, Impact on children & more! 🖇️👇

#LongCovid #ME