An open access version of the full paper has now been posted on PubMed pmc.ncbi.nlm.nih.gov/articles/PMC... #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

👋 Hello. We’re Too Tired To Make. A space for where art, wellbeing and disabilty meet, and energy is limited. We’re here to think in public about making with care, pacing, and honesty — no pushing through, no neat answers. If you’re tired and still creative, welcome 🌱 #ME/CFS #ADHD

Epstein survivor rejects Starmer’s apology. Pls share.

Saying no to some/any/all treatments or interventions, is just as valid of an option as saying yes to one/some/all. And we can’t judge others for what they decide based on what we would do ourselves. It’s their body, their consent.

Fresh fresh new pots! Available on www.roseschmits.com Video this time with my iconic pink studio wall 💕

Night plays across the bedroom wall - from my ME/CFS bedroom project glass.photo/andrewgiffor... ALT: colour photo of man asleep in blue bedroom where window light plays across the wall, like a projectionists winter project

Thank you @nadiawhittomemp.bsky.social for backing this call for urgent action. Together we speak with one voice to defend inclusive spaces and services 🏳️‍⚧️

Olympians are masking up with N95s because they know a covid infection can derail their chances of competing. They know it could derail their careers. They know it could disable them. They’re practicing self care and community care. Give them a gold medal in public health!

I forget that there may be newer ME patients who do not know this history. Great video at the top of this thread.

I'm probably preaching to the converted, but I did a little video on why you shouldn't call ME/CFS 'chronic fatigue syndrome'. www.youtube.com/watch?v=Dn41...

I’ve had to fill out the same questionnaire twice a year since 2017 to get my six-month continuous birth control prescription filled. Sometime since July they’ve added POTS to the common patient diagnoses checklist. #LongCOVID

‼️ 🚨 Emergency funding update for Nevra 🚨 ‼️ Nevra is currently in hospital, which costs £260 GPB/day. Please help Nevra access life saving treatments. If you can't donate, please like, comment, or share! PayPal: paypal.me/SaveLizNevra GoFundMe: gofundme.com/f/save-nevra

Please use this template to advocate for Savannah, a #SevereME patient in grave danger, being mistreated in Queen Elizabeth hospital Lewisham! #SevereMErgency #pwME #MECFS scroll to bottom for short email for low energy www.reddit.com/r/cfs/s/sVmw... pls share #saveME #CanYouSeeMEnow

"Those Who Were Already Here" centerleftstack.substack.com/p/those-who-... Someone with long Covid eloquently thanks those with ME/CFS who have supported with advice, etc. the Long Covid new arrivals with similar symptoms & impairments #MEcfs #LongCovid #CFS #PwME #MyalgicEncephalomyelitis

We are still being told to wash our hands only for a predominantly airborne virus with serious post infection risks. 🧵

The hospital has refused to talk with Sonya from Action for ME. They cannot be reasoned with. And the people in a position to force change are refusing to do so. @ashleydaltonmp.bsky.social how many more of us will you let starve to death under NHS 'care'

NEW 🚨 A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why. www.thecanary.co/uk/analysis/...

Happy to collect and collate a book of witty replies. We could call it Quips for Cripps! Let me know if you come across any and I’ll happily make a list.

1/4 📢 APPG on ME announcement As many of you will already be aware, @tessamunt.bsky.social MP has officially been appointed Chair of the APPG on ME, following the group’s Annual General Meeting last week 🤝 #APPG #MyalgicEncephalomyelitis ⬇️

I just read “Chronic fatigue syndrome from vagus nerve infection: A psychoneuroimmunological hypothesis” by Michael B. VanElzakker. It’s very well written and explains various things well, like what are Glial cells & what substances they can pump out to cause sickness behaviour & neuropathic pain>

Zack Polanski, "Labour are being completely subservient to Trump" "Nigel Farage and the far right are making us isolated, by removing us from our European neighbours and making us reliant on Donald Trump" "That also serves the interests of Putin" "This is a battle for the soul of our country"

1) Peter Novak's dysautonomia clinic in Boston reports that ME/CFS and Long Covid patients have increased rates of: - reduced cerebral blood flow (ca 90%) - small fiber neuropathy (ca 50%) - postural tachycardia (ca 20%) and hypotension (ca 15%) - preload failure (ca 90%)

Expert reaction to study using population whole genome sequencing data to find genetic determinants of persistent EBV DNA and associations with chronic conditions. www.sciencemediacentre.org/expert-react...

Like Baroness Chakrabarti, I too assumed that this was fake news. I've since concluded that Mahmood's speechwriters actually hate her and are amazed she is still in post.

The fantastic, legendary @bettinagrande.bsky.social speaks out for people with MECFS: (machine translation from German) "They are, in a sense, constantly under general suspicion – this is an enormous burden and naturally has an internal impact." So grateful for this caring professional and her work.

This is the #DWP "Disability Advisory Panel". Some of the names and organisations on it no one has heard of: www.gov.uk/government/n... There is no one from North West England, which has some of the highest concentration of ill-health, deprivation, #disability, #health inequality and #welfare need.

Heartfelt email to GP practice manager No.46383 sent, in the hope of a genuine and caring response re #pwME, GP training and accessible healthcare. Not holding my breath, obviously.

You’d think this is made up. That it can’t be true But then you read about the death of Maeve Boothby-O’Neill and others and you realise it’s happened before - it’s absolutely unbelievably cruel and bizarre #MEcfs

Rise and shine, it's the final day of #BigGardenBirdwatch! Remember, you can still take part even if you haven't signed up. Help us spread the word: share this post, text someone, or tell the whole table over your Sunday roast. The more data we get, the better 🧑🔬

2023- 1 in 5 Doctors had long covid. 1 in 4 nurses also have long covid. We will end up at a tipping point without action, with gaps throughout the labour force and at that point it will be very hard to turn things around. www.bma.org.uk/media/7318/b...

If you would like to be in the slightest bit an ally, at the very least, when you see someone else masking, in a store, at the doctors, put one on yourself. Let that person know by your action that you have not abandoned them and they are not alone. Because they could be living on rice and yeast.

🚨 One week left to contribute to ME research and fill in our 2025/26 Big Survey! If you've got ME or ME-like symptoms as part of long Covid, we want to hear from you 🙏 🔗 Take part, and find out more: www.actionforme.org.uk/research-cam... Thank you!

“The treatment of today’s ME/CFS patients is comparable to that of lobotomy patients decades ago. When the full history of ME/CFS is written one day, we will all be ashamed of ourselves.” Prof. Dr. Ola Didrik Saugstad, Professor of Pediatrics, WHO Advisor, Norway.

I’m sick of all the emotional grenades lobbed at people w/ ME—the articles/studies/books/guides w/ harmful information or both sidesing. I’m sick of feeling pressured to read things not bc I expect to learn anything helpful, but so I’ll be able to defend myself when it’s inevitably used against me.

"Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly." —MLK Jr.

And it disproportionately takes women out of the movement. Never good for a movement

Great to have this new review for a relatively neglected area in the research literature An Overview of Severe Myalgic Encephalomyelitis Free fulltext: www.mdpi.com/2077-0383/15... #MyalgicEncephalomyelitis #SevereME #MEcfs #CFS #PwME #ChronicFatigueSyndrome #SevereMECFS

2/ Extract from new paper: An Overview of Severe Myalgic Encephalomyelitis Free fulltext: www.mdpi.com/2077-0383/15... #SevereMECFS #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

This is why BACME should be shut down & why the ME orgs should not be working with them in any capacity. @meassociation.org.uk @actionforme.bsky.social #ME #pwME

Today's Post "Tell Your Story" open.substack.com/pub/undercla... Uncovered scandals, injustices, unlikely breakthroughs. I want to hear about them all. Pls read RT and subscribe

Galileo Galilei house arrest for heliocentrism Ignaz Semmelweis institutionalized for hand-washing data Charles Darwin excommunicated in spirit for evolution Louis Pasteur ridiculed for germ theory Alfred Wegener dismissed for plate tectonics Hans Selye mocked for showing stress & trauma damage

JAMA: COVID-19 infection in pregnancy is associated with increased risk of neurodevelopmental disorders in early childhood. We were warned about maternal immune activation YEARS ago. Clean air, masking, and prevention were never “overreactions.” They were child-protection. They still are.

Just published in BMJ Open Large UK Long Covid cohort study finds that recovery is low and negatively associated with fatigue severity bmjopen.bmj.com/content/16/1...

The House of Lords are debating pandemic preparedness this morning!

BBC report at a headline level that Grok will now not make sexually exploitative images any more. An actual reporter comes on and explains that it will do no such thing, and will just make the images invisible in the UK. These are two very, very different things.

MIT's MAESTRO study is looking for a few more #LongCovid male participants in the 18-28 yrs & 56-65 yrs brackets. See below screenshots for more info on Long Covid research study from posts by @immunofever.bsky.social & talresearchgroup.mit.edu/mitmaestro #medsky

I’m leaving X partly because of this shit. I hope more people will use this platform #ME/cfs

You can’t fight facism when you are out spreading illness to your community and living the health supremacist’s lifestyle.