Update of the current demo dates #ME/CFS 🇩🇪 #pwME
Newly added:
Kassel, Münster, Nuremberg, Weimar, Schweinfurt
A final time for Oldenburg, Bielefeld, Bremen, Dresden & Tübingen
+ a final date and time for Ulm
• slight time change at Freiburg & Nordhorn/Grafschaft Bentheim
@liegenddemo.bsky.social
Maddy Corper shares her experience of life before Long Covid, and how the illness has impacted her life.
Find us on Facebook - we have a general Long Covid Support Group, a Men's Support Group and a Carers' Support Group.
#LongCovid #LongCovidAwareness #LongCovidSupport
Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018
“It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”
Article in the British Journal of General Practice (BJGPLife) with guidance for GPs on how to improve their consultation skills so they can better support their patients with conditions like #LongCovid and #ME
I’d say that the estimate of 0.6-1% is very conservative. The national UK figures have been around 2-5% of the population and achieving full recovery is still relatively rare. This is apart from counting in new future cases.
News clip from @bmj.com
#LongCovid
Report: www.oecd.org/en/publicati...
Dysautonomia in Long COVID is Prevalent and Could Explain the Frequency of Symptoms — Leonardo Tamariz et al "Orthostatic hypotension was observed in 12% of the study population, and postural orthostatic tachycardia syndrome (POTS) was seen in 10%" "Measures of exercise induced dysautonomia were seen in 57% among the 25 long COVID patients who had a CPET."
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.
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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.
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Six years of being ignored.
Yesterday that changed...
Four CVF members set the record straight.
Starting with @larawong.bsky.social sharing our official statement:
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#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
Composite of 4 photos - 2 wide angle ones with woodland on sun, 2 close ups, one with forget me nots and one with bluebells
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.
Image of a person walking up the stairs showing microclots in the muscles.
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...
Failure of Biological Recovery is Unusual and Unique to ME/CFS The most consistent finding in ME/CFS research is also the most instructive. Patients cannot reproduce energy output on repeat exertion, whether physical, cognitive, emotional, or environmental. I'm an exercise physiologist, so I understand this literature the best and the literature is probably best developed related to physical exertion. Across multiple centers all over the world, two-day cardiopulmonary exercise testing (CPET) demonstrates that people with ME/CFS show objective declines in volume of oxygen consumed and workload at submaximal exertion on the second day, despite showing maximal effort on both days. 4-6 ME/CFS is a crisis of reproducibility in science, just not the way we normally talk about it. This failure of biological recovery does not occur in healthy controls, deconditioned people, or in other chronic diseases, including heart failure, chronic obstructive pulmonary disease, and multiple sclerosis.? It is not fatigue. Rather, it is failed metabolic recovery.
Post-Exertional Physiology is Not Optional Science in ME/CFS The emergence of post-exertional physiology forces medicine to confront an inconvenient truth. We have engineered entire research and treatment approaches without verifying that post-stress recovery worked. People with ME/CFS have been harmed because we have ignored the physiology of recovery, leading to misapplications of exercise, cognitive-behavioral therapies, and a piecemeal approach to testing repurposed pharmacological therapies. Post-exertional physiology now sits at the uncomfortable intersection of metabolism, immunology, and cardiovascular function. Science and medicine must break down the conceptual silos between them, so exertion will not continue to be weaponized.
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.
Thanks @nickyproctor.bsky.social for some excellent points
SOUNDS LIVE • 15:30 - 16:00 Feedback > Radical with Amol Rajan. Faith, Hope and Glory. Interview of the Year BBC Inside Science Listeners have been telling us their thoughts about a recent episode of Radical with Amol Rajan, in which he interviewed Dr Suzanne O'Sullivan, a physician specialising in neurology and clinical neurophysiology. It was an in-depth discussion about the potential dangers of "over-diagnosis" - but some listeners felt that Dr O'Sullivan's views could have been challenged more. We get some answers to your questions.
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/...
The ideologically driven opposition to masks (even and especially in healthcare settings), to the extent that people forget they exist as a very practical response to reducing infection risk (not just) in high risk settings, is one of the most depressing legacies of the pandemic.
Why we continue to write…
Fred Rossi @darthfoo.bsky.social quoted by @davetuller1.bsky.social
#LongCovid
#ME
‚The panel made a conditional recommendation to offer people living with ME/CFS who decline a trial of graded physical activity, or who experience problematic symptoms despite a trial of graded physical activity, a trial of traditional Eastern movement therapy.‘
Yoga? Qi Gong? Aaargh!
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...
