The detailed agenda for the International ME/CFS Conference 2026 is out and it is just amazing. Top-notch novel research, 2 ministers, 50 researchers, focus on the hard (but needed) neuroimmunology road...
Have a look. No stone unturned! Just impressive 👏👍
events.mecfs-research.org/en/events/co...
BBC highlights criticism of claims from neurologist that Long COVID is psychosomatic; and debate over "functional somatic disorder" in Frontiers in Medicine
virology.ws/2026/04/21/t...
@profmarkfaghy.bsky.social, Long Covid researcher and LCK trustee is quoted in this article:
“For some, walking upstairs, having a shower or even the psychological drain of a conversation can trigger a relapse and the after-effects can last weeks."
www.mirror.co.uk/news/health/...
#LongCovid
Access to Work Is Missing the Point for People With M.E./C.F.S. News provided by Stripy Lightbulb CIC on Monday 20th Apr 2026 facebook sharing buttonemail sharing buttonsharethis sharing buttonlinkedin sharing button UK-based Community Interest Company, Stripy Lightbulb CIC is raising serious concerns about the suitability of support currently being offered to people living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (M.E./CFS) through the Department for Work and Pensions’ Access to Work scheme. Recent reporting by The Canary, to which Stripy Lightbulb CIC contributed, highlighted how people with M.E./C.F.S. are being directed towards coaching services that categorise the illness as a form of “acquired neurodivergence”. These services typically focus on cognitive, behavioural or workplace coaching approaches. Our concern is straightforward: this type of support does not address the fundamental barriers to employment experienced by people with M.E./CFS and other energy‑impairing conditions. M.E./CFS is a serious, multisystem disease characterised by post‑exertional malaise, where physical or cognitive exertion can cause significant and prolonged worsening of symptoms. For many people, the primary barrier to work is not confidence, organisation or mindset, but a severe and unpredictable lack of usable energy. No amount or style of coaching can resolve this.
(UK press release by Stripy Lightbulb CIC)
"Access to Work Is Missing the Point for People With M.E./C.F.S."
pressat.co.uk/releases/acc...
#MEcfs #PwME
Kurze Folge der Deutschlandfunk Sprechstunde zur Long-COVID-Off-Label-Liste. Laut Astrid Weber fehlen wichtige Medikamente wie bspw. LDN, während Agomelatin und Vortioxetin, die auf der Liste stehen, in der klinischen Praxis keine Rollen spielten.
www.deutschlandfunk.de/long-post-co...
The Sick Times I developed Long COVID while practicing medicine. The system had no place for me An important essay from internal medicine resident Mustafa Talat: "Medical institutions must educate staff that Long COVID is a disabling condition affecting up to 40% of healthcare workers who contracted and continue to contract COVID-19 while working in hospitals that have failed to control the spread of the virus and other pathogens."
The Sick Times @thesicktimes.org : I developed Long COVID while practicing medicine. The system had no place for me
thesicktimes.org/2026/04/17/i...
Screenshot from latest Science for ME weekly update
#LongCovid #Medsky
1) 🇨🇳 There's a new review on exercise therapy for ME/CFS, written by a Chinese group in the Journal of Psychosomatic Research.
It claims that exercise improves fatigue with a big effect (SMD = 0.85) but that it didn't improve functional capacity or cardiopulmonary function.
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.
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
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.
