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George Monbiot @georgemonbiot.bsky.social · 02/10/2026

@davetuller1.bsky.social, a great champion of patients, interviewed me about the massive, ongoing scandal of the neglect, abuse and mistreatment of people with ME/CFS www.youtube.com/watch?v=Maae...

youtube.com

Interview with George Monbiot about Guardian column on ME/CFS

YouTube video by David M Tuller

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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George Monbiot @georgemonbiot.bsky.social · 22/09/2026

Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together. And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2

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UK Charity Invest in ME Research @investinmeresearch.bsky.social · 22/09/2026

Prof Simon Carding QIB will be interviewed by Louise Hulland of BBC Radio East this afternoon at 2.35pm about his co-lead of an international project looking to ultimately improve the treatment of Myalgic Encephalomyelitis (ME). www.bbc.co.uk/sounds/play/...

bbc.co.uk

Radio Norfolk - Listen Live - BBC Sounds

Listen live to Radio Norfolk on BBC Sounds

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 04/09/2026

Too many #pwME tell me of NHS services where there is no accommodation for their ME related needs, and engagement sets them back rather than helping. I’ve written to minister Karin Smyth MP asking that the new Single Patient Record includes information on such needs - a sensible low cost measure

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 15/08/2026

Congrats to James Frith MP, newly appointed as the Minister for Health Innovation, with responsibility for ME. I’ve written to him on ME emphasising that given the numbers, and the length and extent of suffering, ME represents a significant burden at personal level, to society and to our economy.

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 08/08/2026

Thanks so much to @hopefullizzy.bsky.social for sharing the reality of her life with #SevereME - one of 300,000+ in UK On #SevereMEDay I honour all your continued determination and resilience. Time for respect for NG206, proper medical education, investment in research and services, proper data.

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 08/08/2026

Thanks to everyone who contributed to such a powerful account. @andyburnham.bsky.social spoke of govt investing in people’s success rather than paying for failure. A year on from #DecodeME results it’s time for serious investment in the research to address the cost to us all of #SevereME. #MECFS

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MEAction UK @meactionuk.bsky.social · 07/05/2026

𝗡𝗼 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁, 𝗻𝗼 𝘄𝗮𝗿𝗱, 𝗻𝗼 𝗡𝗛𝗦 𝘀𝗲𝗿𝘃𝗶𝗰𝗲. 𝗧𝗵𝗲 𝗺𝗼𝘀𝘁 𝘀𝗲𝘃𝗲𝗿𝗲𝗹𝘆 𝗶𝗹𝗹 𝗽𝗲𝗼𝗽𝗹𝗲 𝘄𝗶𝘁𝗵 𝗠𝗘 𝗵𝗮𝘃𝗲 𝗻𝗼𝘄𝗵𝗲𝗿𝗲 𝘁𝗼 𝗴𝗼. #MillionsMissing 2026 read our article & our templates to contact your MP shorturl.at/uSfz6. #VerySevereME

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 12/05/2026

I’m so aware that #WorldMEDay is painful for many, bringing home how tough it is to have #ME, and the seeming lack of progress. Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.

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sarah boothby @swastrosarah.bsky.social · 10/05/2026

Full and deepest sympathy @galen2.bsky.social #MEAwarenessMonth

Full blown blue rose behind white text recording the life and death from ME of James Strazza 4 May 2026 age 38

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 16/02/2026

Thanks to The Times for highlighting Savannah’s story and the critical issue that there is no specialist NHS service for very severe ME. Grateful to Ashley Dalton for our recent brief call but still waiting for progress report re ME Plan commitment to explore such a service, including treatments.

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Fox Under The Moon @foxunderthemoon.bsky.social · 05/03/2025

Sometimes it is difficult To know which way to turn, But listen in those moments, There’s often lots to learn ~ Life will give you challenges, Oceans you must cross But the best time to find yourself Is when you’re feeling lost. Links to buy are in our bio, or visit: www.foxunderthemoonart.com 🦊🌙

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Darren Parkinson @greendarrenshipley.bsky.social · 12/05/2025

On #MECFSAwarenessDay I'm calling for government to #FundThePlan. A plan for #MECFS with no funding is no plan. It's time for government action. #MillionsMissing @ashleydaltonmp.bsky.social

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George Monbiot @georgemonbiot.bsky.social · 12/05/2025

After due consideration, having weighed up the relevant evidence, assessed the balance of arguments and gamed the likely implications, I have reached the conclusion that Keir Starmer can fuck off from a great height.

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Long Covid Advocacy @longcovidadvoc.com · 12/05/2025

🌠On #MEAwarenessDay we fight for visibility, research, and justice. 🛌Millions are missing. We deserve to be seen, believed, and treated. 🧪We need urgent biomedical research to make progress. #MillionsMissing

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Swifts and Swallows @swiftsandswallows.bsky.social · 07/05/2025

This came up in my fb memories today. Isla wrote about her pushy GET driven OT and @tymestrust published it. How I regret being referred to that OT. tymestrust.org/tymespublicati… #MEAWARENESSMONTH #severeME #rememberingisla

A letter from an 8yr old girl about her OT not believing her and pushing her too hard

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Swifts and Swallows @swiftsandswallows.bsky.social · 14/01/2025

It's 8 months today since my daughter Isla died. She was 18 & had Severe ME, POTS & MCAS. She'd been ill since she was 6 yrs old. We're still waiting for Pathology results, still waiting for answers. Sharing a photo from early on in her ME journey. #ME #SevereME

An 8 year old girl sitting with 2 rabbits

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Swifts and Swallows @swiftsandswallows.bsky.social · 07/01/2025

13 yrs ago today Isla (6) and her sister (1) had tonsillitis. Isla was never well after this and was diagnosed with ME 14 months later. Years of deterioration culminated in her death last year. #ME/CFS #severeME

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Swifts and Swallows @swiftsandswallows.bsky.social · 25/12/2024

When life seems overwhelming and your cat knows just what you need #siblingloss #cattherapy #bereavement

A cat stretched out with its paws on a hand

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Swifts and Swallows @swiftsandswallows.bsky.social · 24/12/2024

Day 12 of our 12 Dinosaurs of Christmas from our 🦖 themed tree dedicated to my daughter Isla who died in May. Isla loved all things prehistoric and would have loved this dinosaur. #severeME #dinosaurs #childbereavement

A light up dinosaur sitting at the bottom of a Christmas tree

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Swifts and Swallows @swiftsandswallows.bsky.social · 23/12/2024

Day 11 of our 12 Dinosaurs of Christmas from our 🦖 themed tree dedicated to Isla who died earlier this year. Today's dinosaur is a crocheted Brachiosaurus made by Isla's younger sister. #severeME #dinosaurs #siblingloss

A crocheted Brachiosaurus on a Christmas tree

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Swifts and Swallows @swiftsandswallows.bsky.social · 22/12/2024

Day 10 of our 12 Dinosaurs of Christmas from our 🦖 themed tree dedicated to Isla who died earlier this year. Today's dinosaur is a Baryonyx model. #severeME #dinosaurs #siblingloss

A wooden Dinosaur model in a Christmas tree

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Swifts and Swallows @swiftsandswallows.bsky.social · 21/12/2024

Day 9 of our 12 Dinosaurs of Christmas from our 🦖 themed tree dedicated to Isla who died earlier this year. Today's dinosaur is a crocheted Brontosaurus made by Isla's younger sister. #severeME #crochet #siblingloss

A pink crocheted Brontosaurus on a Christmas tree

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Swifts and Swallows @swiftsandswallows.bsky.social · 20/12/2024

Day 8 of our 12 Dinosaurs of Christmas from our 🦖 themed tree dedicated to Isla who died earlier this year. Today's dinosaur is a crocheted Triceratops made by Isla's younger sister. #severeME #crochet #siblingloss

A pink crocheted dinosaur on a Christmas tree.

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Swifts and Swallows @swiftsandswallows.bsky.social · 19/12/2024

Day 7 of our 12 Dinosaurs of Christmas from our 🦖 themed tree dedicated to Isla who died earlier this year. Today's dinosaur is a cuddly Triceratops. #severeME #siblingloss #dinosaurs

A cuddly Triceratops in a Christmas tree

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Swifts and Swallows @swiftsandswallows.bsky.social · 18/12/2024

Day 6 of our 12 Dinosaurs of Christmas from our 🦖 themed tree dedicated to Isla. Today's dinosaur is a bright sequinned Triceratops. Not sure Isla would approve of this one, she wasn't a fan of sequins but we needed more dinosaurs to fill the tree up! #severeME

A bright blue sequinned Triceratops on a Christmas tree

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Swifts and Swallows @swiftsandswallows.bsky.social · 17/12/2024

Day 5 of our 12 Dinosaurs of Christmas from our 🦖 themed Christmas tree dedicated to Isla who died earlier this year. Today's dinosaur is a crocheted Plesiosaurus, made by Isla's younger sister. #severeME #mecfs #siblingloss #dinosaurs #crochet

A green crocheted dinosaur on a Christmas tree

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Swifts and Swallows @swiftsandswallows.bsky.social · 16/12/2024

Day 4 of our 12 Dinosaurs of Christmas from our 🦖 themed Christmas tree. Today's dinosaur is a felt Christmas TRex. #SevereME #Dinosaurs #Siblingloss #grief

A felt T Rex with a Santa hat hanging on a tree.

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Swifts and Swallows @swiftsandswallows.bsky.social · 15/12/2024

Day 3 of our 12 Dinosaurs of Christmas from our 🦖 themed Christmas tree. Today's dinosaur is a cuddly Tyrannosaurus

A cuddly green Tyrannosaurus on a Christmas tree

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Swifts and Swallows @swiftsandswallows.bsky.social · 15/12/2024

It's now 7 months since Isla died and we're still waiting for Pathology results. No idea how much longer we'll have to wait. #severeME #mecfs #grief

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Swifts and Swallows @swiftsandswallows.bsky.social · 14/12/2024

Day 2 of our 12 Dinosaurs of Christmas is an Archaeopteryx that has been crocheted by my daughter in memory of her sister Isla. #severeme #mecfs #dinosaurs #siblingloss

A crocheted dinosaur on a Christmas tree.

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Swifts and Swallows @swiftsandswallows.bsky.social · 12/12/2024

My daughter wants to share 12 dinosaurs from our dinosaur 🦖 themed Christmas tree 🎄 in memory of her sister Isla who was fascinated by all things prehistoric. Dinosaur 1 is a felt Triceratops. #severeme #mecfs #dinosaurs #siblingloss

A felt Triceratops decorating a Christmas tree.

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Swifts and Swallows @swiftsandswallows.bsky.social · 22/11/2024

It's Children's Grief Awareness Week. The toddler here is now 14 & trying to deal with the loss of her sister Isla. Like Isla she has ME & POTS, a cruel twist of fate that these conditions make dealing with grief so much harder. Emotional energy causes so much PEM. #CGAW24 #ME

A 2 year old girl sits next to her 7 year old sister on a picnic bench

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Swifts and Swallows @swiftsandswallows.bsky.social · 21/11/2024

This is a lovely Etsy shop with beautiful pieces in it. Really recommend. I've purchased something for my daughter and she's going to love it. @craftymissb.bsky.social Thank you so much

craftymissbcrafts.etsy.com

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Michiel @murtoz.bsky.social · 19/11/2024

@counsellingsam.bsky.social wrote a brilliant article on the canary - accurately reflecting how harmful all the labour rhetoric around benefits is. It just feels like tory rhetoric but this time with a red logo instead of a blue one. At which point are we just going to call this what it is: eugenics

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Katherine Warwick @katwar72.bsky.social · 18/11/2024

Those who have been blessed enough to never have to deal with multiple #chronicillnesses usually give me the deer in the headlights look when I mention even one of my chronic illnesses.

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Yann (ME/LC) @me-cfs.bsky.social · 18/11/2024

Disturbing. It’s hard enough when the whole medical profession is against you, but now we can’t even trust our own charities. Reform the ME Association. Establish board term limits. Make them accountable. Until then, don’t donate. ME Research UK, MEAction, or the OMF are alternatives.

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Swifts and Swallows @swiftsandswallows.bsky.social · 17/11/2024

When you're feeling ill but need a distraction - cat cuddles and crochet are the way to go. #me/cfs #myalgicencephalomyelitis

Two black and white cats cuddled up on the lap of a teenage girl crocheting a pink dinosaur

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Central Bylines @centralbylines.co.uk · 13/11/2024

Hello BlueSky. We had held off starting a dedicated channel to see how BlueSky evolved instead posting all of our 10 Bylines on @bylinesnetwork.bsky.social, but given how fast BlueSky is growing, now is the time to make the jump. Please help spread the word that Central Bylines are now here

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Swifts and Swallows @swiftsandswallows.bsky.social · 14/11/2024

It's 6 months today since my daughter Isla died. She had Severe ME, POTS & MCAS. Still waiting for a Pathology report, still waiting for answers. Sharing a happy photo from 10 years ago. #ME #SevereME #thegreatestmedicalscandal

Photo of a happy 8-year-old girl in a riding hat wearing a rosette

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Swifts and Swallows @swiftsandswallows.bsky.social · 12/11/2024

My first post here so what better to post than a cute cat photo

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