An Austrian ME/CFS patient sued against the withdrawal of her allowance. Vienna Higher Regional Court has ruled in her favour,criticizing the methods of experts who reviewed the case & dismissed the D-A-CH consensus statement on #MECFS Translation www-kleinezeitung-at.translate.goog/lebensart/ge...

‘If you’re disabled, you’re not ill.’ Sir Charlie Mayfield (author of the Keep Britain Working review) This is who’s shaping UK disability employment policy. Shocking, he doesn’t even understand the basics. I’m disabled because I’m chronically ill with #MECFS.

At the #ICanCME2025 conference today! Sabrina Poirier & Maeghan Taverner's intros blew me away. ~Acknowledging labor from people with lived experience ~Setting out expectations ~Moment of silence for those we've lost This is what a conference designed by people with lived experience looks like 🧪

Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a baroness — I’ve put together a short thread about her involvement in #MECFS. twitter-thread.com/t/1981309222...

“We Can’t Do This Alone”: A Doctor’s Plea for Support in Caring for Long COVID and ME/CFS Patients danilobuonsenso.substack.com/p/we-cant-do...

October International Research and Advocacy Roundup emerge.org.au/news/october... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

This was submitted February 2024! www.nature.com/articles/s41...

Just dealing with an ME enquiry: a lot of people understandably want to know what they can do to help improve their health. But people also need to try to avoid making themselves worse. Pretty obvious for long-term patients, but can be an awkward topic to bring up. #MEcfs #PwME #CFS

Thank you 🙏 @georgemonbiot.bsky.social Here’s an interview with George and @davetuller1.bsky.social to learn more…! m.youtube.com/watch?v=SpLM...

From the September 2025 Chronic Living @chronicliving123.bsky.social Therapy newsletter Open Letter to the British Association of Counselling & Psychotherapy (BACP) magazine by @lammasleaves.bsky.social et al chroniclivingtherapy.com/open-letter-... #MyalgicEncephalomyelitis #MEcfs #CFS #PwME

It can feel lonely navigating the #LongCOVID crisis. We report on this common, life-changing disease that affects over 400 million people worldwide. Sign up for our newsletter and join others who want fact-based news without COVID-19 denial, minimizing, or gaslighting. thesicktimes.org/newsletter/

Sounds promising. (So long as they don’t go the graded exercise /psychology route)

20 people were injured at Heathrow airport on Monday+the Usual Suspects suggested the event may have been a Mass Hysteria/Mass Psychogenic Event as people caught ‘THE IDEA OF ILLNESS’ from each other People with #ME #LC will be familiar with this nonsense The REAL cause turned out to be CS gas 🤦‍♀️

Useful new blog post by @lammasleaves.bsky.social : "Picturing M.E." oaktreestudio.co.uk/2025/09/04/p... Includes photos and images "that realistically portray M.E. (includes links to collections/albums of examples)" #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

New resource: "A collection of photos that could reasonably be used to illustrate articles about M.E. ( #MyalgicEncephalomyelitis), sometimes known as MECFS, & (outdated term) #ChronicFatigueSyndrome" from @lammasleaves.bsky.social unsplash.com/collections/... #MEcfs #CFS #PwME

*cut first for Please @bsky.app could you give us an edit button? I hate my typos

I understand gaps will be filled and corrections made in due course to allow #pwME to avoid #PEM by living at a less breakneck speed than legal deadlines permit. This is the type of reasonable adjustment needed to include patients & family carers in any activity for intended for their benefit. 2/2

I am proud to endorse this initiative, with thanks to the very many people made unwell by medical neglect of #ME who never give up, no matter how difficult it is to continue. This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2

On behalf of all MECFS sufferers - here and gone - thank you to whoever is taking this action. Donate if you can 💙🕊️

Almost two years ago, our beloved, brilliant #bethmazur ended her life while visiting me. The grief has softened with time, but the impact has reshaped me. I've written about it here: jrehmeyer.substack.com/p/holding-wh...

This is why pwME get so upset when newcomers to the field don’t engage existing experts. We have lost so, so much time, and critical information, to people who refuse to build on existing knowledge.

Covid accelerates vascular aging An 18-country, 38-center study of ~2,000 participants —Effect predominantly in women, adding 5 years of aging —Seen with non-hospitalized and mild-moderate Covid —Reversible in some at 1-year; vaccination link to protection apps.crossref.org/pendingpub/p...

“I am proud that this study was run differently, with lived experience at its heart. Proud that our community stepped up en masse to participate, and proud that we are at the forefront of scientific research into this debilitating illness.” - Sian Leary, DecodeME PPI

Today is #SevereMEDay - a day to recognise and honour the people living with the most devastating forms of Myalgic Encephalomyelitis (ME). We are deeply grateful to those with Severe ME who took part in the DecodeME study. Your contribution is vital.

As shite as it is having ME/CFS in the UK and knowing our NHS is still actively harming our severely ill community members, it's helpful to hold a little hope and appreciation for the good people advancing ME/LC science and research. www.youtube.com/watch?v=UFJP... Thanks Linda T and all at OMF!

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

Y'all in the #NEISvoid, someone is asking me what's a good book to give to someone with new #MECFS. And I have no good answers. What do you think? Please share!

🌟A positive step forward! 👉A platform to test efficiently & simultaneously multiple different therapies 🔸Funding is £200K over 18m 🔸Open until 2 December 🔸NIHRIO have already done a rapid horizon scac (report included). #longcovid #MEcfs 🖇️ tinyurl.com/m2akv6rm.

Me and (my?) shadow. Check out this little scientist (age: 11 months) as she explores light and shadow with the assistance of an afternoon sunbeam. 🧵

Np! It's an excellent paper & should be standard reading for rheumatologists and beyond.

🔊 There is an audio version available on Substack open.substack.com/pub/longcovi...

📚Suzanne O'Sullivan in her new book 'The Age of Diagnosis' has claimed that Long Covid is psychosomatic There has been ALOT of media attention on this 👉Our contribution on the tropes, techniques & tricks used... www.longcovidadvoc.com/post/the-suz...

I was recently in Perth, Australia, to see Alem Matthees, the patient who liberated the PACE data through a freedom-of-information request. Reanalyses showed the trial had null or negligable results. Here's an account of my visits two weeks ago with Alem: virology.ws/2025/04/14/t...

I figured that 10% of people with ME/CFS do not have ME (thanks to old diagnostic criteria that don’t require PEM), but this suggests it’s more like 22%. Really is no wonder so many report things like the lightning process helping them 😕 bmjopen.bmj.com/content/15/4...

Congratulations to the heroic Mark Vink for managing to publish another paper while bedbound with severe ME 👏🏆 "The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS" www.mdpi.com/2075-1729/15... #MEcfs #CFS

A gobsmacking story. Water companies let toxic waste disposers, for cash, dump their loads into sewage farms. The sewage sludge is then spread, untested, on farmland, potentially poisoning vast areas, entire ecosystems and the people (you and me) eating the food. www.theguardian.com/commentisfre...