Unglaubliche Aktion der Willy-Brandt-Gesamtschule in Mülheim: Schüler & Lehrer veranstalteten eine große #LiegendDemo. Sie setzen damit ein starkes Zeichen der Solidarität für den ehemaligen Schüler Luis, der nach einer Covid-19-Infektion schwer an ME/CFS erkrankt ist. 💙 #mecfs #LiegendDemo.

Excellent letter from Dr Mark Harper and the Cambridge ME and Long Covid Support group & co-sigs. It is a response to the RCPsych letter to our open letter signed by 58 orgs. It primarily deals with their claim as experts in the BPS model & well worth a read.

Painted egg shells by Ruby Silvious, artist who utilises unusual canvases #WomensArt

Patients now have a seat at the table: across the National Decade Against Post-infectious Diseases' (funded and managed by the German research ministry) 3 working groups include 6 organisations to represent the patient perspective. #MECFS #LongCovid 🔗 https://t.ly/Clw4x

Great guide. In an ideal world every clinician would have been taught something as simple to recognise as #PEM in med school.

8 ) In the Long Covid trial, the authors conclude: "The absence of a treatment effect across fatigue, cognitive, and functional outcomes in our study may suggest that HERV-W ENV-associated pathways are not dominant drivers of symptoms [...]"

2018 250,000 #pwME 2026 1,000, 000 #pwME #LongCovidME apart from the rise in numbers and a review of NICE guidance, has anything else changed? hansard.parliament.uk/Commons/2018...

“It was horrendous, it was almost like being in a semi-coma. All my very basic bodily functions were struggling and my capacity to do anything like read or watch TV was zero.” Dr Nina Muirhead, describing how ME affected her in 2020 #MECFS

Hilda Bastian @hildabast.bsky.social : "Values and Conflicts at Journals" (re: disputed Cochrane review on exercise for ME/CFS, etc.) absolutelymaybe.plos.org/2026/06/24/v... s4me.info/threads/2025... Screenshot from latest Science for ME @s4me.info weekly update #MEcfs #PwME

ME/CFS: Neue Hirnforschung könnte zentrale Rätsel der Erkrankung erklären www.dmz-news.online/2026/07/12/m...

2026 and seems we are slowly getting somewhere undeniably clear: cholinergic loss, brainstem mass volume shrinkage, connectivity issues, loss of dopaminergic neurons, autopsy-study, genetics pointing to neurons, key role of mast cells as mediators... 1/3

🧠 What if #LongCovid is, in part, a disorder of dopamine? Our new commentary explores how disrupted dopamine signaling may help explain fatigue, brain fog, and autonomic dysfunction, and what this could mean for future therapies. Open access link: shorturl.at/vLAfU

A reminder again that <0.1% of NHS staff have even seen these modules on ME/CFS. Given the number times pwME have had said to them in hospital, "What is ME?", I'm not that surprised. :( This has to change. bsky.app/profile/luci...

By the way, the reduction among these neurons is HALF! Not 10%... but half of an absolute key network of neurons wiped out... But yes, we just need to think positively and bring ourselves out of this with good will... 🤡🤡🤡🤡🤡

Interesting preliminary study shows that people with #LongCOVID have actual damage to the vagus nerve fibers that normally control the stomach. When they looked at stomach biopsies, they found far fewer nerve fibers, especially the cholinergic (vagal) ones, compared to HC.

🚀 The final presentations from the International ME/CFS Conference 2026 by Gunnar Gottschalk, Elisa Stein & Judith Bellmann-Strobl are now online. All talks are now available. Watch them on our YouTube channel! 🔗 https://t.ly/LvT0P #mecfsresearch#mecfs#mecfs #longcovid #pais

#pwME #ME #MEAwareness

1) "SARS-CoV-2 antigens circulate in plasma up to one year after infection in a minority of individuals, regardless of whether they develop Long COVID or not, and become rarely detectable later on."

4) In addition, the presence of antigens was not associated with persistence of Long Covid symptoms, symptom clusters, or antibody responses, which were similar across groups. The measurements at 2 different time points show that persistent antigen presence was uncommon.

This week at The Sick Times, @rorpreston.bsky.social shares why he founded CrunchME, a new patient-led organization seeking to compile evidence and accelerate research on ME, Long COVID, and other Infection Associated Chronic Conditions (IACCs). bit.ly/4hvBUrw

Un article important, dont la traduction en français vient d'être publié. Une ressource a gardé sous la main pour contrer une psychologisation abusive et infondée de l'EM ou du CL.

Kleiner Rückblick zum Heimspiel der Hertha gegen Greuther Fürth und das Banner der Gruppa Süd! @ pfarrer_falk (Instagram) hat für die Gruppa Süd ein Interview & Text geschrieben. Wir empfehlen dort auch vorbeizuschauen: www.gruppa-sued.de?p=2560

We’re really good at putting up with discomfort & pushing on, & almost no one tells you post-exertional malaise can be cumulative & dangerous. And the limits needed to stay symptom-free can be extreme, so it takes enormous effort & *privilege* to be able to stay under them.

Contemporary Scottish painter Caroline Walker, who captures everyday aspects of women's lives #WomensArt

+1! One of the best, indeed.

Hodgson also says, "Other actions included in the final delivery plan are continuing as planned..." but note that she doesn't say *all* other actions. One of the actions was that all 40,000 members of RCP would have done the modules by end 2025. That hasn't happened. bsky.app/profile/luci...

The PH minister Sharon Hodgson is keen to mention the modules when constituents ask for updates about the ME Final Delivery Plan, but it's healthcare workers that need to see them, not constituents! "Taking steps" seems to mean putting modules on the hub, but then not promoting them effectively.

*LiegendDemo 8.8.26 vor dem UKE in Hamburg* Bitte kommt zahlreich (persönlich oder durch Stellvertreter). In jedem Fall ist es wichtig, mit vielen Menschen auf die Misstände am Kinder-UKE und die Versorgungslücke am Erwachsenen-UKE hinzuweisen. #MECFS #LongCOVID #PostVAC

Timeline of Selected Advances in Multiple Sclerosis from Dr. Steven Hauser. www.nejm.org/doi/10.1056/...

“He was a doctor who ran marathons. Now, walking to the bathroom is harder than any marathon he ever ran. In this grade of severity ME is only invisible if people purposefully look away.” Evelien van den Brink calling for biomedical #MECFS research in European Parliament in 2019.

💯 Severe and very severe need to be at the absolute center of #ME advocacy. In terms of research potential, social needs, historical injustice, risk of (often life-threatening) illegal institutional abuse and most of all, because they are the ones who literally cannot speak for themselves.

Clearly because we don't have enough positive vibes and we want to stay sick 🤡🤡🤡

Egal wo man fragt (hier in Belgien): Menschen mit #MECFS berichten von starker Beeinträchtigung durch die Erkrankung und das GET kontraproduktiv ist. Die medizinische Versorgung ist auch in Belgien inakzeptabel.

Good report by the KCE. Too bad nobody gives a damn in the gvt or medical institutions in Belgium.

8) To improve the situation in Belgium, the KCE recommends multidisciplinary reference centres, improved education of physicians, a research agenda on ME/CFS, and improved recognition of the illness to combat stigma.

Do you know the story BEHIND the new €7.5 million EU grant for the DISCOVER-ME project? I wasn't part of the tiny group that spent years lobbying for #MECFS in Brussels, but I've followed their work closely for years. Here's a glimpse behind the scenes. ⤵️

7) Big thanks to all the researchers and patient advocates who made this possible! More info about the project can be found here:

Now someone please explain to me why #MCAS is taking such a backseat in nearly all #MECFS #LongCovid and #PAIS research/ conferences? It just does not make any sense. (MCAS): Dr. Lawrence Afrin Reveals Genetic Causes, Symptoms & Comorbidities braininflammation.org/mast-cell-ac...

Healthcare workers are not only allowed to suggest it, many are encouraged to bring it up. You can (and will) get asked if you’ve considered Assisted Death and organ donation. You don’t have to be terminal. You don’t have to have expressed a desire to die. Being disabled is “enough”

I support autonomy in death. I want the choice when I’m ready. I do not want it pushed on me in lieu of support It’s impossible to describe how painful it is to go to the hospital looking for help, only to have them suggest euthanasia instead It’s eugenics They’ve decided we’re “useless eaters”

This pacing‑based rehabilitation and management study showed that right after the 5‑week rehab stay, 45 percent of patients were worse on the Bell Disability Scale, and only 14 percent improved. 😩  Another rehabilitation study bites the dust… #pwme #myalgicE papers.ssrn.com/sol3/papers....

Conçu pour sensibiliser les personnes valides, les proches, et toute personne souhaitant mieux comprendre les réalités de l'EM. 📥 Disponible sur notre site internet à la page "Ressources" et à consulter ici : cloud.millionsmissing.fr/s/5wtA3rdkno... Un grand merci à Christine pour ce travail.

For next 4 years 👍 Haven't managed to see the amount, but the research aim & proposal looks 👍

Great news for #pwME! A first in the history of EU research funding: DISCOVER-ME is funded under EU Horizon call HORIZON-HLTH-2025-01-DISEASE-07 - the first European research call ever to name ME explicitly as a priority condition. For a disease long marginalised within mainstream medical research

9) This is probably the main conclusion of the trial: multidisciplinary rehabilitation, even when when based on pacing designed for patients with post-exertional malaise, often doesn't work, it doesn't improve physical function and its value should not be overstated.

8) They also stated that severe patients (Bell score < 30) "should not be required to undergo rehabilitation. This is especially relevant given that participation in a rehabilitation program is often a prerequisite for eligibility for disability pension in Germany."

[oc] The Barbican Estate in Bloom r/brutalism

Please could you support @tessamunt.bsky.social amendment Clause 47 of the Health Bill? This would make it possible to have vital clinical needs & adjustments on patient record. Things like this are vital. Eg “adjustments for severe noise or light sensitivity” “will arrive with stretcher transport”

It's our seven year anniversary 🎉🎊💪 We reflect on the last twelve months and offer a sneak peak of what's coming next in our newest blog post www.physiosforme.com/post/physios...

Based on experience I would bet we ALL have been presented with this 'suggestion' at some point, no matter what. By a friend, a professional, a rando... and often not in connection with our level of physical or psychological 'suffering'. The legal system is moving there as well... horrific stuff.