Hey @wired.com @henryholtbooks.bsky.social @annasplat.bsky.social what are you going to do about your writer, Alan Levinovitz, repeatedly lashing out at patients for pointing out errors in his work and posts promoting work? I’m one of several patients he has misrepresented and attacked this week

AAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHH

@actionforme.bsky.social @meactionuk.bsky.social @meassociation.org.uk Pls could you create a site as @murtoz.bsky.social suggested to keep track of #SevereME & #VerySevereME ppl in hospital, latest updates & how to help? It’s v.quick & cheap to do We need to track abuse to properly evidence it

I am so proud to be associated with those living with very severe #ME. You are the most courageous, determined and intelligent people ever. So few know anything about what you are facing, or how the UK State lines up to attack you through NHS 'standard operating procedures'. Update due justice4me.uk

There's many more. The following people all had nutritional support withheld by the NHS and suffered permanent deterioration due to this. Savannah Victora-May (23) Carla Naoum (23) Millie McAinsh (18) Alice Barrett (25) Sami Berry (43) Karen Gordon (39) I am sure there's many more. it has to STOP.

@amnestyuk.bsky.social @goodlawproject.org @jolyon.goodlawproject.org Please read this – we see human rights abuse regularly & it’s been going on for decades Successive governments & NHS know but are allowing us to die Why? We need your help, we are too ill. #SevereME #GreatestMEdicalScandal

#SevereMErgency #pwME, please sign this petition and email the hospital if you can. Instructions on the petition. @tessamunt.bsky.social - here we go again. @jamesmurrayldn.bsky.social @sharonhodgsonmp.bsky.social how many more times will you allow this to happen? We need safe beds for the Severe!

I met him at my worst, after 17 months very severe. Had to travel 60km in a stretcher. No home visits (of course). I had lost 1/3 of my weight by then, couldn't handle anyone longer than 2 min. Severe MCAS, POTS, heart damage from several reinfections... unable to communicate. I was dying.

Update: Young people & families today received shocking & transphobic letters from NHS. These letters tell people that endocrine care (blockers / HRT) is being fully withdrawn in 7 weeks time (July 31st). Forced medical detransition. This country is a danger to trans children & young people.

@wired.com @henryholtbooks.bsky.social Perhaps you’d like to look through the 500 memorials here since the dangerous misinfo you’re publishing contributes to our death toll? www.ncf-net.org/memorial Wired; pls retract & apologise Holt books; going ahead is complicity #GreatestMEdicalScandal

If you have any tips about the editorial process behind WIRED's pseudoscientific article on Long COVID and want to speak, text me on Signal at milesgriffis.31

Pls sign & share petition to ask @wired.com to retract their dangerous article @retractionwatch.com tagging you in case you’re not already aware. Excellent responses from @longcovidadvoc.com & others too. This ties in to wider human rights issues & fraudulent PACE 2011 study #GreatestMEdicalScandal

Labour's revolting attack on trans people - traducing the independence of our institutions with handpicked, highly politicised, figures - continues.

The anatomical proximity and direct connection between the olfactory bulb and the orbital prefrontal cortex (OFC) make it a key neuroinvasion route for #COVID in the brain. In patients with #NeuroCovid, we observe thrombotic events, hypometabolism and atrophy in this region.

Hello again @wired.com @katie-drummond.bsky.social just making sure you keep up to date with your writer Alan Levinovitz’s behavior! If #LongCovid patients, clinicians, researchers and community have to keep putting up with this harm, yes you’re going to keep getting notified of it

The MECFS situation is not a matter of brave psychobehavioural researchers and dangerous delusional activists. It is more like the situation with smoking or global warming - a truth about real and tangible harm suppresed by vested interests.

The community is often demonised as angry or not clever enough to really understand The real issue is that it is an incredibly strong mix of people bringing multiple disciplines, expertise & lived experience That is difficult to hoodwink & we keep receipts! It is mighty & it is you, so thank you

Farage previously indicated he’d be “steering well clear” of Liz Truss’ CPAC GB. Now, he’s headlining the thing. His MAGA paymasters clearly had a word.

💫 UPDATE: We had a lovely friend of LCA hand deliver the Open Letter to @subodhdave1 President-elect of The Royal College of Psychiatrists Signed by 58 orgs & 1200+ people! 💙 His secretary will ensure it is handed (all 16 pages of signatures) to him tomorrow. #RCPsychIC More about the letter👇

More news from the party that supposedly protects woman and girls. Reform UK controlled councils in Essex have banned libraries from promoting International Women’s Day. www.bbc.co.uk/news/article...

In experiments using cells, blocking WASF3 allowed mitochondria to produce energy at normal levels. The researchers are now planning a clinical trial using an FDA-approved drug repurposed to tamp down ER stress. “We’re hoping that if we can block WASF3 overproduction, then we have a chance of

“Twenty years on, I came back to campaigning for sufferers of ME only to find that almost nothing had changed.” MSP Helen McDade speaking about #MECFS in the NHS debate in Scottish Parliament.

My first post about that Wired piece: virology.ws/2026/06/09/t...

New peer reviewed research confirms people with ME/CFS have a consistent faulty cellular structure A faulty ion channel function is a consistent biological feature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ( #ME/CFS), providing long-awaited validation www.eurekalert.org/news-release...

1) In this interview with David Tuller, Prof. Chris Ponting gave more info about the SequenceME & Long Covid project that received £4.75 million from the UK government. It will measure the whole genome of ME/CFS patients in high resolution so that rare mutations can be found.

“The community is not a mob protecting a story. It is a population that watched a treatment paradigm hurt its own members and now flinches when the same machinery rolls out under a new name. That flinch is learned, and it was learned the hard way.”

Dear Insurance Companies. That’s not how humans work. There is a limit. The body doesn’t just keep working. People deteriorate and die if they can’t rest when they need it. The point of insurance is that people that can work pay to cover that gap for people or themselves when they can’t work.

#PEM post on #MEAwarenessDay🤕 Help me escape abusers. Declining fast🪦$250wk #DSP rent neg- room, land, cabin SAFETY in #Melbourne🇦🇺 💸Fund: www.chuffed.org/project/1619... ☕️BMaC: buymeacoffee.com/Halcionandon 🎁AmazonAU: amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ ᯓ➤Beem: Halcionandon #Mecfs #PwME

still trying to get enough visibility to acquire representation. I know that this is a passing moment for most of you, but it's my life. I feel the indifference and/or paralysis of people on a wide scale. I'm frustrated that advocacy orgs do nothing. nowhere when I need you. gofund.me/bd7e9930d

❤️🧡 Save Nevra - June Update 🧡❤️ Share this post and engage in the comments! PayPal: PayPal.me/SaveLizNevra GoFundMe: GoFundMe.com/f/save-nevra #SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing

Well done @longcovidadvoc.com. As usual thinking about ways to make tangible initiatives. You rock. Thanks

@jamesmurrayldn.bsky.social please hear us! And please also post on Bluesky and not just Twitter/X…

“People with ME have sadly had to endure far too much disbelief and delay.” Clip of Dr Hans Kluge, WHO Regional Director for Europe, opening the @investinmeresearch.bsky.social 2026 International ME Conference #IIMEC18.

Reminder that when people w/ ME or Long Covid express anger about the #GreatestMEdicalScandal of the 21st century, it’s because real people—mostly young women—are being abused by the medical system, abandoned by society, blamed for their suffering, & robbed of their lives. RIP Mirjam 💙🕯️

Before I followed a psychobehavioural approach for MECFS, I was mild, able to walk miles on a good day, and no less deconditioned than your average office worker. Since that approach destroyed my life and baseline, I have been severe, 95% bedbound and very limited in what I can do for five years.

Dear Germany/Austria #MECFS community, I have an urgent question for a Severe sufferer in Göttingen DE. We are looking for a doctor/ doctors who can arrange/prescribe the tube feeding or Künstliche Ernährung. The patient is only 21 and severely malnourished. #severeME

🧵 of highlighted #MECFS and #LongCovid research papers being discussed this week on the Science for ME forum. 25 - 31 May 2026

More than light - voice for the voiceless. Last night, #MEAction UK took to the streets of London to urge @jamesmurrayldn.bsky.social#MEActionto listen to the most severely ill people with ME & set up NHS care. Lobby your MP!

Lighting up the darkness for ME. #MEAction UK took to the streets of London to urge James Murray, the Secretary of State for Health and Social Care, to listen to the most severely ill people with ME. We need the immediate setting up of NHS specialised care to prevent more suffering and deaths.

"Women's health clinics offering breast screenings would be unable to provide this service to trans women. This is despite the fact that trans women who have had more than five years of Gender-Affirming Hormons Therapy (GHAT) are forty-seven times more likely to develop breast cancer than men"

Dear BBC journalists, you really do not have to 'debate' every far-right talking point that pops up on your X feed. It is not "deeply contentious" to suggest non-white people can't be English. It's racist. The word you're looking for is racist

This is horrible. RIP. The conditions our state puts some of the most vulnerable people under is a disgrace. Things need to change. They HAVE to stop harming welfare claimants

I was born and raised here. Countless brave Sikh soldiers died for Britain, proudly wearing their turban and kirpan. Thankfully, Rupert and Restore don't get to decide what is British. Beware … today they’re coming for me, but tomorrow it could be you!

A lot of the problem is the moral weight attached to health, an underlying belief that ill health is, on some level, a choice, and that if people really wanted to be well, they would do the "hard work" to "get healthy". Which allows folks to assume moral superiority over people w/ lived experience.

If anyone pays to read Wired Magazine, now is the time to divert those funds. I enjoyed Wired in the early 2000s but it went severely downhill and has now jumped the shark by blaming a criminally underserved disabled population for their own predicament.

And so many people who have been fighting for years to recover from Long Covid lose any gains they’ve made & end up even sicker after each reinfection 😭

Today @thesicktimes.org: Research ethics boards urgently need training on Long COVID and ME, @spichaksimon.bsky.social argues. Better training could help prevent studies that may harm patients, like those trialing exercise. thesicktimes.org/2026/06/02/r...

Very important to remember. Has the UK ever experienced, under any elected Government, as profound a withdrawal of protections for minoritised groups as the unelected Supreme Court has delivered in its recent decisions?

Quietly, quietly, the UK Supreme Court is embarked on a rollback of the human rights and judicial protections of vulnerable minorities which looks every bit as stark as that of the US Supreme Court.

Yes I have ME and I have been ordered to do the f-ing pace shit. Beyond tired of the stupidities. The people who need their brains retrained are the people who believe you can retrain your brain to magically change back physiological changes/damage to your body