Just finished up our second day of #AdvocacyWeek with @solveme.bsky.social's Monique Wike! Want to know what's up each day this week? Consult the handy-dandy two-pager here: canva.link/mecfsquickst....

Also, @viralpersistence.bsky.social via @iaccsky-updates.bsky.social went above and beyond creating terrific feeds for LC and other IACCs, because people said they couldn’t find the chronic illness content they wanted. For me at least those feeds work beautifully so I don’t know what the issue is.

🚨A pwME in Poland (not a minor) has been sectioned at the urging of their parents. Their friend is working to help get them out and could use recs for Polish lawyers knowledgeable in these spaces or help from other PwME from Poland. If you can help, I’ll connect. #MECFS #LongCovid

Friends with ME/CFS: Today’s advocacy effort aims to create a paper trail of bad ME care, so you're sending a complaint to a regulatory body in your state. It’s almost entirely scripted for you—just add a paragraph about your experience seeking ME care, then follow instructions to submit it!

100% THIS. Most of you do not remotely comprehend what it feels like to survive severe #MECFS, year after year. Decade after decade. If you did, you would fall to your knees in thanks every day that you don’t face what @kookysnell.bsky.social & I (& millions more) do every excruciating minute.

Our paper is (finally) out in @cp-cellrepmed.bsky.social: antibodies from #LongCOVID patients transfer symptoms to mice, pointing to a potential causal role for autoimmunity: www.cell.com/cell-reports... @amsterdamumc.bsky.social @umcutrecht.bsky.social 1/12

As with Amazon, these increasingly hostile, destructive policies are going to drive people harder to find alternatives, no matter how clunky. Like in every other area, the collapse of capitalism into pure extraction creates motivation for mutual aid. We can make an alternative ecosystem.

Thanks @nataliegreenpeer.bsky.social for your concern & compassion for the millions of children & workers whose lives have been devastated by #LongCovid 💚

B&W are spot on that govt is just manufacturing "consent" for the next eugenicist law they want to pass. They keep targeting all the vulnerable and minority groups while doing nothing to address corporations or big business. Fed up of having corp profits prioritised over our childrens' wellbeing

@nataliegreenpeer.bsky.social Thank you for asking this question! Is there any way you can ask follow up questions? Like, given that covid is still doing the rounds, and new people are still getting long covid every single day, why is the govt content to use outdated 2024 data?

🎯🎯🎯 This sounds mad but #pwME *know* there's still a cabal of ideological zealots high up in NHS and civil service that keep blocking any kind of progress wrt care for #pwME. That bad study supposedly showing vaccines cause autism? Retracted. The PACE trial? Still live and seen as hallmark!

There is a collection for @meassociation.org.uk at David's memorial service which he organised. Literally dedicating his very last act to our plight. #MECFS www.scottishlegal.com/articles/mem...

I'm a WIMEL writer 🙋🏻‍♀️ Watch this space for more news about our major project. #MECFS #MyalgicEncephalomyelitis #pwME

Anyone know whether The 'Skeets' @continuitytweets.bsky.social (aka @rfh1955.bsky.social ) is OK? No sign on here for over 3 weeks now. 😟 I hope they're just taking a break, but I do worry when my tweeps are silent for a long time.

Looking forward to joining @scottishgreens.org with the brilliant @lornaslater.bsky.social on Sunday in Edinburgh Central - great chance to win our first constituency seat in the Scottish Parliament edinburgh.greens.scot/events/knock...

Am I in some sort of time warp? 🌀 This is *new* UK government guidance on invasive meningococcal disease. Almost as if Module 3 of the #UKCovidInquiry hasn't just reported... 🤔 www.gov.uk/guidance/out...

ME/CFS and Long Covid justice, I want: - Multi millions in research funding - £100k compensation for medical negligence - Welfare at Living Wage, back dated - Off label NHS meds immediately - Expert NHS clinical centres - Single bed NHS wards for Severe - Mandatory GP education What else?

Another injustice that needs urgent reform is the process for claiming PIP. I should not be interrogated as though I were dishonest by a PIP assessor trying to discredit me. I should not need to advocate for myself & make the case to prove myself disabled to a gov agency unwilling to pay out.

And this is why BACME should be banned from providing "services" to people with ME. It's the organisation formed by our abusers... And while they sound NICE compliant, the abuse is ongoing. The lack of care is ongoing. #ME/CFS where there is less care the more ill you get.

We need way more education & research into ME & Long COVID. And we need, with immediate effect to stop the NHS from starving patients to death. It’s happened more than once with pathetic excuses. Where’s Preserve life, Protect life & Promote Recovery? Where’s Duty of Care? Where accountability?

Our ME/CFS onset age study gets the usual incisive summary from this team (we found an early peak in adolescence and a later one in early middle age).

Robust Study Roundly Criticised For Triggering Fleeting Unease

This is why Wes Streeting's promises that the NHS data he is giving Palantir won't be misused are utterly meaningless. Even Palantir says so.👇🏻

One more day when I am awestruck and amazed by the confidence of random men on the internet who a) demand citations and get mad when denied, b) condescend about your "tone" c) tell you how silly and emotional you are, you silly lady historian Bless your tiny little hearts.

Laws of physics-1 IPC establishment-0 Aerosol-borne viruses swirl through the air like deadly invisible smoke in unventilated indoor spaces. Fix this & we can #StopTheSpread without lockdowns. Fix this & CV folks can rejoin society. Fix this & your kids might enjoy lives unblighted by #LongCovid

Such a powerful account I heard at the weekend about a young woman bedridden with very severe Myalgic Encephalomyelitis following Covid-19 in 2021. We need to talk a lot more about #LongCovid www.theredtreeandme.com/p/red-leaves...

BBC Wales Breakfast today highlighted the invisible illness of severe ME. Carer Myfanwy talks about her son Tomos' inability to walk or talk & Sylvia from WAMES discusses caring for her daughter Michelle for decades & lack of services for severe ME in Wales. Starts 1h16 [7 mins] tinyurl.com/2w4tukfc

Early registration now open for the International Society for Long COVID and Post-Acute Infection Syndromes Conference: 26–29 August 2026, Amsterdam. islc-pais.org/registration/ Summer School (24-25 Aug), Early-Career Symposium (26 Aug), Patient Recap event (29 Aug) #ISLCPAIS2026 #pwME

My new research is out "Overview and Pathophysiology of Long Covid" I provide an updated overview of key concepts, terminology and epidemiology of LC. I also offer an analysis of key mechanisms of pathology and multi-organ involvement in #LongCovid www.mdpi.com/2673-8112/6/...

@tessamunt.bsky.social I wonder if you’ve seen this. David J Black wrote a series of articles on #ME Well worth reading, particularly this one for you as it refers to fairly recent goings on in Parliament.

The endless exhaustion and frustration of having to explain #ME and PEM to health professionals who are not convinced is heartbreaking and aggravating beyond belief. They should know, they should be disturbed and interested enough to get themselves informed and then help us. Act please!

Me and the missus first thing in the morning.

The Department for Work and Pensions is now telling disabled people who need support through the Access to Work scheme that it could take 37 weeks to make a decision on their application, senior civil servants have told MPs. #AccessToWork #DWP www.disabilitynewsservice.com/new-access-t...

It's 8th anniversary of this paper A lot of it was only possible due to Alem's heroic FOI victory, which the #PACETrial team fought so hard to stop. That surely wasn't because the real results weren't as flattering as they had presented them? bmcpsychology.biomedcentral.com/articles/10.... #MECFS

#pwME David Black's memorial will start at 2pm on 9 April at The Queen's Hall 85–89 Clerk St Edinburgh EH8 9JG "for a time, things looked rather promising in Scotland" www.scottishlegal.com/articles/dav...

“What was really surprising to me during my initial dive into all of this was how, when you look at the question of superintelligence as a documentarian or journalist, it doesn’t take long before you smack your forehead into the low doorframe of race science, because it’s baked into this technology”

Got my front door ready for Holyrood 2026. Vote 💚

"Real stupidity beats artificial intelligence every time" Swear Terry Pratchett's Words are Trolling us this from one of my favs Hogfather. Imagine banning his books. Unreal.

Nightclub owner at centre of meningitis outbreak says “something isn’t making sense”. “There's been a lot of talk about how hard it is to transmit… …but actually, it was transmitted a LOT more easily, by the looks of it, than they're suggesting.” www.lbc.co.uk/article/meni... 🧵

Broken every promise plighted. Even more on this leadership manifesto...

A quick reminder of Starmer's leadership pledge number 4.

This is utterly jaw-dropping. A school that bans Atwood, Zadie Smith, Terry effing Pratchett and *literal George Orwell* is actively harming its pupils. www.indexoncensorship.org/2026/03/scho...

💙 Our condolences to David J Black's family after his passing. Obituary about his life below. His writing about ME was top notch, please see his articles on the Scottish Legal site 👇 We hope his book on ME can still be published post-humously www.scottishlegal.com/articles/dav...

Witnessing the rise of Nazis in Germany, Hannah Arendt said: “The death of human empathy is one of the earliest and most telling signs of a culture on the verge of descending into barbarism”. Where is UK heading - attacks on minorities; curbs on human rights, millions in poverty,

In this presentation to the Safer Healthcare Biosafety Network, some of CATA's key findings are discussed, including some highly questionable activities by the former '4-Nations IPC Cell' & ARHAI, which blocked the provision of respirators to HCWs at the height of the pandemic. tinyurl.com/CATA-SHBN

I'm so very sorry to read this. We had been wondering why his book hadn't been published. He is one of the few public figures ( @georgemonbiot.bsky.social aside) who truly understood the #MECFS scandal and wrote 3 excoriating articles thereon. A long interesting life, lived to the full. May he RIP 🕊️

Sorry guys I don't give a fuck about those meme-fossils and his movies just weren't that good Chuck was a Christofascist shitcunt and we've lost nothing

But certainly don't do these things to help slow climate change for your children or reduce exploitation by the most evil people in the history of the world. Only do these things to help cover the impacts of a felons random war.