It took me over 2 months to watch this video, a minute or so every couple days. On 0.4 speed. In black and white. No sound, only subtitles. I still probably overdid it. Perhaps that’s a testament to how severe ME/CFS can get. But i just wanted to share it because it’s really really excellent.

💯 I don’t feel than any of the #ME charities place adequate importance / reach out to engage with the Severe & Very Severe #pwME in their communities. They then leave, through attrition. Charity membership pools have sadly become super saturated with unrepresentative mostly Mild -> Moderate members.

I like how the graphic here answers its own rhetorical question

The boulder may have contributed, but without pre-boulder functional data, we can't establish causality. Probably deconditioning. #LongCOVID #Ableism #Satire

Portes "Theres a lot of nonsense talked, including on Sky, about the spiralling welfare bill.. as a proportion of our national income.. its lower than it was 15yrs ago & its pretty much back to what it was under Thatcher.. this idea its out of control is just wrong" Spot on!

Germans must now have doctor’s note to call in sick to work: ‘Extraordinarily high levels of sick leave’ “We can no longer accept the extraordinarily high levels of sick leave in our companies” - German Chancellor Friedrich Merz Source: archive.md/apPod

If you tell the fash it's acceptable to throw some of us under the bus they won't stop chucking with the one group YOU find a bit icky; sooner or later they'll get to you. None of us are free unless all of us are free Women, minoritised races, the disabled, LGBTQIAA+, we all need to stand together

We need everyone to realise that fascist hatred of trans people and fascist hatred of disabled ppl both come from the same place; a eugenicist place. Which is why those of us with either of those identities as well as those of us with both are in so much danger from the same people

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...

already sick of seeing this prick

– Surely you had pre-existing conditions? #longcovid #ableism #satire

I am trying to feel a celebratory kind of #DisabilityPride this month. Disabled ancestors, disabled futures, disabled communities and disability justice are all worth celebrating. Instead I feel #DisabledRage and the fire of disabled people throughout history insisting that our lives are worthy.

☀️ As The Sick Times approaches our 3-year anniversary, we’re shifting from a startup to a more sustainable newsroom, in it for the long haul. And we’re marking that shift with a summer sustainability fundraiser. 🌱 2 weeks, 200 new Supporters? Help us grow? the-sick-times.fundjournalism.org/donate/

I am sorry for your hardship my friend. Pain opens your soul up for more empathy for others. It has me. ❤️‍🔥

In April @ukbiobank.ac.uk stopped all researchers from accessing their Research Analysis Platform. In May they indicated they would “provide a more specific timetable in early June”. Until access is restored @decodemestudy.bsky.social analysis is stalled. We will keep all participants informed.

Welcome to Disability Pride Month, also known as “Abled People Wrinkle Their Noses and Ask Why You’re Proud of THAT” Month, and let’s just handle this now: I am not proud of my disabilities per se. I am proud that ignorance hasn’t ground me into dust yet. I am proud of my fellow disabled people.

Slept shit, so can't form the words to do this collage work justice, other than say I find it both beautiful and powerful.

#LongCovid #ME #GeneralPractice bjgplife.com/the-long-tai...

I'm extending my "free art for Mutual Aid" to "free art for trans people for any reason". Want some silly art to cheer you up? Give me a shout x

My latest feature @thesicktimes.org: Wastewater surveillance in the U.S. urgently needs more funding. Public health organizations are calling for Congress to fund the CDC’s program in its 2027 budget, while state health departments plan ahead for potential gaps in grants.

This is unacceptable from GPEW. The alt text is a brief summary of the text. The text that they wrote and could easily copy and paste into the alt text field. Two seconds of effort was too much for the Greens.

Lots of people rightly calling out the lack of commitment on trans rights here, but far less highlighting that disability rights are also absent despite us looking at a minimum of tens of thousands of disabled people being sent into poverty by 2030 as it stands

This project, by an anonymous ME patient, uses the voices of people with Severe ME for everyone with ME who often has to make themselves worse just trying to access healthcare. nicecollages.portfoliobox.net/the-collages #mecfs #ME/CFS #chronicillness #invisibleillness #art #collage #CraftSky

A primary socio political economic issue that is rarely investigated is that the 'overdiagnosed' illnesses are often chronically under diagnosed & underfunded in reality. And the overdx stance validates this status quo. www.longcovidadvoc.com/post/the-suz...

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

I had my PIP reassessment in January, when my energy levels are at their lowest. I’ve got a currently incurable condition, and now they’ve removed the option of just ticking ‘No change’. It’s all so deliberate and therefore dehumanising. I wish my illness on all of the decision makers. Fuck em.

[18] The Labour govt have made anti-democratic opposition to equality a big part of their rule. Not only have they de facto banned trans ppl from public places, they have decided to dismiss the welfare of ppl with disabilities & their rhetoric & laws on refugees would make Griffin smile.

Universal Credit is hassling me with a "voluntary chat" about going back to work. Just after an entire benefits review showing I am unable to work, am very disabled and won't be bothered about it again until 2029. I hate them so much. Two messages now about "this is voluntary and won't affect you"

🆕 Ground-breaking @horizoneu.bsky.social Grant Awarded to EMERG-led Consortium to Advance Biomedical Research in Myalgic Encephalomyelitis (ME) buff.ly/78IMqzH

I’m being denied the support to live while “offered” death. That’s coercion. It’s eugenics. The system has decided I’m not worth saving. I’m not alone in this. Disabled people urgently need allies and support in this fight. And I need some home care.

I had to pull this from FB, as obviously they aren't here. From The Labour Party, 2d ago. They're segregating trans people in toilets, social clubs, sports, hospital wards, prisons. Repealed Section 28? Instituted another one, for trans people. The GRC? They've murdered it. This is depraved.

If I have learnt one thing from many years of talking to the cunning folk of Hookland it is of the importance of knowing from which direction evil travels. – #CLNolan, BBC National Programme talk, 1936 #FolkloreAgainstFascism

You’re all ready to bring the same energy you brought this month for Disability Pride Month in July, right? Because Jesus Christ, we need it and you.

#WorldSclerodermaDay A rare incurable and serious autoimmune disease. Primarily affecting women (80%), w/ high rates of black women. On average, it takes 3 years to be diagnosed due to diffuse symptoms (Raynaud’s, swollen or itchy hands, fatigue, shortness of breath). Every day counts. Please share.

I thought it would be impossible to find love in my life while being severely ill and disabled. Especially, as I’m trapped inside my room and am 99% bedbound with severe ME. I had given up that idea – yet, I sometimes daydreamed about meeting someone and having a relationship. 1/9 #MECFS #pwME

@longcovidadvoc.com @drelke.bsky.social @betsyladyzhets.bsky.social @mileswgriffis.bsky.social @emilyrj.bsky.social alan levinovitz is discussing his article on the S4ME forums. Not a fan of Jonathan Edwards and his "EDS/MCAS are garbage diagnoses" bs, but the discussion might be helpful to follow?

@murtoz.bsky.social I’m very disappointed in the absolute silence of @chrisgpackham.bsky.social on trans people’s attacks too… he’s spoken out on autism enough, there’s a big crossover of trans people, he could be such a great ally with science backed stuff. Alas, what a huge disappointment

With Andy Burnham favouring welfare cuts to fund defence, will any UK ME/CFS or Long Covid orgs push back against this and protect us? Currently: No clinical support. Pitiful welfare. No justice. Will @actionforme.bsky.social @meassociation.org.uk & @meactnet.bsky.social step up, fight for us?

I find it fascinating that some journalists on here seem so clued into what the UK government is doing but never seem able to mention the word 'trans'. And when I say 'fascinating' I mean highly suspect, George.

#NewsStories DNS (Disability News Service) is looking 4 examples from last few months of broadcasters, particularly BBC News & Sky News, that have failed 2 challenge claims that spending on 'welfare' is spiralling out of control & needs to be cut. Examples with links to video would be most useful.

Here’s a little story about Myalgic Encephalomyelitis. In April I had a procedure under anesthesia where an unmasked doctor made me sick. The immediate procedure recovery & acute infection both lasted ~a week, but the stress on my body caused an intense bout of post exertional malaise (aka a crash).

@neurologistmom.bsky.social coming in again on 🔥🔥🔥 I feel like her words are describing so many of our experiences with underfunded diseases like #mecfs #longcovid. Thank you for writing this. open.substack.com/pub/neurolog...

@meassociation.org.uk With regards to your times survey. Genuine question - why are you limping PEM in with fatigue? And only asking 1 or 2 Q's out of 50+ on the hallmark symptom of our illness?

7) Unfortunately, the TIMES survey also has significant problems IMHO such as grouping symptoms into dubious categories such as 'cranial nerves'. Post-exertional malaise is grouped under fatigue, which doesn't seem right.

Civil servants can't attend pride, nurses can't wear a Palestine badge, but Hillary Cass can speak at Jordan Peterson's conference 👍

As Britain swelters through another heatwave, few people will have heard that ministers have quietly dropped plans for solar carports. Cars cooler in summer. Shelter from the rain in winter. Clean electricity all year round. A missed opportunity? @eastangliabylines.co.uk

Considering Labour has closed remaining actual safe routes, including family reunification and for Afghans, which also blocking work and study visas specifically from countries which high asylum rates, this is massively disingenuous bullshit from Mahmood. 4/

I hand out respirator/breatheteq masks to my patients to help them reduce their risk of getting COVID and Long COVID. Here's the letter I've put together about this for parents about children masking. @longcovidresource.bsky.social @longcovidadvoc.com @longcovidkids.bsky.social #longcovid