3/ "most patients research their own conditions. As physicians, we must accept that these patients may know more than we do about their condition." doi.org/10.31486/toj... Screenshot from latest Science for ME weekly update #LongCovid #chronicillness #epatients #MEcfs

Trump's higher ed ransom note is here - everyone would have to acquiesce to their unprecedented demands or not be "given priority for grants," plus they can demand "reimbursement" for "violations" www.wsj.com/us-news/educ... A mechanism to enforce fealty. An attack on academic freedom and democracy

From ME Research UK @meresearchuk.bsky.social A small study has identified that skeletal muscle oxygen diffusion may be impaired in both people with ME/CFS and in those with long COVID. Read more: bit.ly/4naUeKi #MEcfs #CFS #PwME

A lot of psych is already conducted with online convenience samples & ppl are probably excited about silicon samples bc it would allow them to crank out more studies for even less 💸 How about we reconsider the idea that sciencey science involves collecting own data. www.science.org/content/arti...

I will never forget the story of “Cara”, a 16 year old who was bullied into removing her mask at school. Staff and kids bullied her. Her mom was immunocompromised and undergoing chemo, and Cara was trying to protect her. She caught Covid & her Mom died. We must be better than this.

Google's recent Android changes (to force developer verification via Google) are anti-competitive and will lead to the shut down of alternative app stores like Fdroid f-droid.org/2025/09/29/g...

"Never-Words for Patients With Invisible Illnesses – Liza Di Leo Thomas, MD" From: When We Don’t Have All the Answers: #LongCOVID and the Need for Humility in Medicine www.ochsnerjournal.org/content/25/3... #invisibleillness #LongCovid #chronicillness #hiddenillness #ChronicIllnesses

"Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you" (Sept 26) by @davetuller1.bsky.social thesicktimes.org/2025/09/26/l... There are some references to ME and generally it seems just as relevant to those with ME/CFS #LongCovid #MEcfs 1/

🌟Superb article on #LongCovid in children by Tess Finch-Lees "Covid is not benign in children. In January, a review highlighted the wide-ranging impact of long-Covid on children and adolescents." No paywall in next post 👇 m.independent.ie/opinion/comm...

Google translation of an article on an interesting #MECFS drug trial that is about to start in Norway www-nettavisen-no.translate.goog/nyheter/vild... Sadly they still haven't reached the amount required to fully do this study. People can donate here: www.me-foreningen.no/om-oss/stott... #PwME

From a Nature piece on bad peer review comments www.nature.com/articles/d41... While most of these are "go away and never review again" tier, I can relate to a couple of these

Want to be able to start micro-editing on Wikipedia in a few minutes – and know why you could be very glad you did? Then my new post @plos.org is just what you need! absolutelymaybe.plos.org/2025/09/21/w... #Wikipedia

Online safety is more important than ever right now, and most people give away their location online unknowingly. I'm Eliza Orlins, a career public defender for 15 years in Manhattan. I spend a lot of time thinking about safety—both offline and online. Here are 10 ways to keep yourself safe 👇

"Cats, and especially pet cats, are natural model systems of human aging" www.biorxiv.org/content/10.1...

All of the talk about "political violence" is an elite-lives-matter movement. They don't give a shit about the murder of poor people.

Look at that tail. Snow leopard at the Los Angeles Zoo.

In my video I described someone who said that “all disability is a social construct” as “wrong”. A couple people have pushed back on this so let me be clear. The Social Model of disability was never supposed to be used in a reductionist way, as the ONLY model for disability 🧵

Patients as knowledge partners in the context of complex chronic conditions mh.bmj.com/content/51/1... "Rather than merely acknowledging ‘lived experience’, clinical and research teams should include patients with complex chronic conditions as ‘knowledge partners’."

We REALLY need this. The number of careless errors, of serious symptoms overlooked, of biased judgements made and documented in my medical notes... it's mind-blowing. And it does so much harm. #NEISvoid #DoNoHarm

Cory Doctrow commenting on Apple and Google's greed: pluralistic.net/2025/09/01/f...

In Which Nadine Amuses a Dragon and Makes Autumn Happen <3 Whimsical Dragon Art Brings Autumn to Life - David Zinn’s Street Chalk Creations: https://streetartutopia.com/2025/08/29/beautiful-autumn-by-david-zinn/

1) 🇨🇦 In a new ME/CFS study, the research team of Alain Moreau reports that haptoglobin (Hp) might be a potential biomarker of PEM severity and cognitive impairment. Its main function is to bind free hemoglobin that is released after the breakdown of red blood cells.

This was very popular a few months ago so I thought I would repost it #MEcfs #MyalgicEncephalomyelitis #CFS #PwME 1/

This resonates strongly… (As it says “scientists”, economists are excluded 😉).

Care instructions for how to take care of people with severe ME. German: public-health.meduniwien.ac.at/fileadmin/co... Google translation: drive.google.com/file/d/1phdn... Screenshot from latest Science for ME weekly update #SevereME #MEcfs #CFS #PwME #VerySevereME

#GreatestMEdicalScandal One would think more journalists would be interested in such a devastating illness (affecting millions worldwide, scandalous history (& present), + a growing crisis due to the pandemic). @lastweektonight.com @weeklyshowpodcast.bsky.social @johngreensbluesky.bsky.social

This is the same eugenic belief system that many still hold re: the ongoing pandemic. They believe people’s deaths from covid are acceptable if they’re medically vulnerable. It’s a disgusting ableist belief system and this rhetoric surrounding children in Gaza is the natural consequence of that

Health(s)care. A short talk for the 8th of August #severemeday2025 about how healthcare can be a frightening place for those of us living with severe ME. We urgently need things to change. We need support, and you can help. Because speaking, 1/ #pwME www.youtube.com/watch?v=qVDw...

Late singer Kara Jane's family has released her album "In Limbo" posthumously on #SevereMEday 💙. Read more about Kara, the album, and the impact of severe ME in this wonderful article by @naomiwhitt.bsky.social in @thesicktimes.org. thesicktimes.org/2025/08/08/p...

August 8 is Severe ME Day. It recognizes the 25% of people with myalgic encephalomyelitis (ME) whom this neuroimmune disease has left so severely ill, we're home- or bedbound. 1/

NEW What makes a legal person? If invisible corporations and inanimate objects can be legal persons, so can rivers and animals By me, at @prospectmagazine.co.uk www.prospectmagazine.co.uk/ideas/law/th...

If I have to explain to you why it's a bad idea to use a machine that makes shit up 15-80% of the time AND destroys the environment AND contributes to rising fascism and genocide AND puts brilliant skillful creatives out of work by stealing their work, then we're already speaking different languages

Six months later: What their response on ME/CFS tells us about the Cochrane Collaboration. New post at Absolutely Maybe .... 1/2 absolutelymaybe.plos.org/2025/07/31/s... #MECFS

“Helsinki has not recorded a single traffic fatality in the past 12 months, city and police officials confirmed this week.” City engineer credits lower speed limits and smart design. I agree. #Helsinki #VisionZero

“The prevailing narrative around ME is both harmful and at complete odds with the reality of living with this devastating and life-changing condition. This narrative contributes to the condition being continually misunderstood, unsupported and underfunded. www.thereforme.uk/p/this-is-no...

My column today on preparing for arrest under the Terrorism Act 2000. www.theguardian.com/commentisfre...

Late to this, but still have lots of thoughts so let’s go: one like = one point on the political economy of disability and chronic illness. Consider this my belated ADA anniversary offering :)

Patients should be paid for their time just as an expert in any other field would be. The research and surveys we volunteer for don't just help us, they help companies make profit too. We are being consulted us as experts -with our years of experience- but our expertise is devalued. ⚡️ #NEISvoid

🗞️ New essay Bluesky and Mastodon users have drastically different perceptions to the UK's new age verification laws: either treating their platform is exactly the same as a Big Tech platform, or assuming their network is so different the laws dont apply connectedplaces.online/age-verifica...

1) New OMF study led by Jonas Bergquist. Using mass spectrometry, they found no differences in steroid hormones between ME/CFS patients (n= 24) and controls (n=24). But the network analysis showed weird results in ME/CFS...

My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that: www.bmj.com/content/389/... #MECFS

"How Discworld Changed Fantasy" www.youtube.com/watch?v=aSWh...

The first step to publishing null results is to learn about equivalence testing, so that you can design studies that statistically support the conclusion that there is no meaningful effect. lakens.github.io/statistical_.... If you are a statistics teacher, include this into 2nd year courses.

Bluesky workarounds for people in the UK having trouble with acces, consider: gist.github.com/mary-ext/6e2... tokimeki.blue klearsky.pages.dev

4. Thanks to brilliant work by @ethanshone.bsky.social‬ at @opendemocracy.net‬, we've learnt that Labour held hundreds of meetings with lobbyists behind closed doors. But the UK’s opaque, undemocratic rules ensure we cannot know what was said in them: www.opendemocracy.net/en/dark-mone...

“If you can use the internet you can work!” Is such a privileged ableist take. It goes to show how little the average person understands chronic illness. How little thought they give to the unique challenges we face or the multiple barriers to holding down a job 🧵

Think how many years of misdiagnoses on average people with autoimmunity accumulate before they are believed: "Doctors who dismiss symptoms of autoimmune diseases as psychiatric or psychosomatic can cause lasting harm, a University of Cambridge study has warned." www.medscape.com/viewarticle/...