“5 years after the introduction of NICE guideline NG206 [for #MECFS], little has changed. Service provision according to NG206 remains patchy and poor, with many patients having traumatic experiences” Helen Morgan MP, UK Parliament

Five years after publication of the NICE guidance on ME - NG206 - implementation is still poor. My amendment to the Health Bill highlights this, requiring that a period be set for compliance and that the Health Secretary publish an annual statement. 🙏🏽 @actionforme.bsky.social for helpful advice.

👇🏽 Great to see the Health Bill Committee debating my amendment for real. Many thanks to @helenmorganlibdem.bsky.social for moving the amendment, to @abrokenbattery.bsky.social for sharing the recording, and to @actionforme.bsky.social for developing the concept. Stronger together! #pwME

Adam@abrokenbattery.bsky.social · 4w ago

“5 years after the introduction of NICE guideline NG206 [for #MECFS], little has changed. Service provision according to NG206 remains patchy and poor, with many patients having traumatic experiences” Helen Morgan MP, UK Parliament

Last Tuesday, when the Hillsborough Bill finally became law, was one of those days in Parliament when I felt particularly proud to be your MP. Public officials lied repeatedly to the Hillsborough families. People in Somerset have told me about dishonesty and cover ups The unfairness drives me wild

#SevereMEweek @yvettecooper-mp.bsky.social @andyburnham.bsky.social please educate yourselves on Severe M.E. Hundreds of thousands of people of working age have been left barely getting by because of this horrific disease. You can change that, by funding research, by finalising the delivery plan.

During Severe ME Week 2026 (3–9 Aug), we're sharing artwork, poems & stories from people with Severe or Very Severe ME to raise awareness. Submit yours here: https://meassociation.org.uk/about-the-mea/campaigns/severe-me-week/ #SevereME #MECFS #SevereMEWeek

As Rod Liddle has died, I notice this column I wrote in 2019 about his attacks on people with M.E. is on the most read again. Rebekah Brooks, of News UK, described Liddle today as “provocative”. In reality, he spread lies about very sick people for cash. www.theguardian.com/commentisfre...

Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be | Frances Ryan

Whether it is ME patients or another target, huge swathes of the media have normalised hatred of minorities for years, says Guardian columnist Frances Ryan

theguardian.com

🎂 @thereforme.bsky.social just turned 2 🥳 I enjoyed taking some time out to think strategy and where our advocacy should go next. Bring on Year 3! You can read my two cents here 👇

ThereForME@thereforme.bsky.social · yesterday

"The political landscape has changed, and if we want different outcomes, our advocacy has to evolve with it." In today's update our co-founder @KarenLHargrave shares her reflections going into year 3 of #ThereForME. Link in next post 👇

“ME is a very dangerous & debilitating condition.” Karen Gordon’s mum, explains why travelling 100 miles for an assessment could cause a serious relapse. Karen needs tube feeding & would be better off at home but is effectively trapped in hospital. #MECFS #SevereMEAwarenessWeek

Crop yields down, our countryside scorched and over 2800 people are dead due to this summer's heatwaves. Meanwhile fossil fuel giants are raking in record profits. We must end this rampant profiteering, and cut fossil fuels from our energy mix as soon as possible.

Damian Carrington@dpcarrington.bsky.social · yesterday

BP profits more than double to $5.7bn in three months as Iran war sends oil prices soaring - "While BP banks enormous profits, millions of households are paying the price" #energycrisis #climatecrisis www.theguardian.com/business/202...

Gary Lineker among 120 UK millionaires urging Burnham to tax wealth - LBC @andyburnham.bsky.social @labouruk.bsky.social These are the millionaires this country should be proud of.

Watching Trump try to get into the World Cup photo, then shuffle off because no-one was paying attention to him, was the perfect ending to this evening.

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

NICE Collages for ME-informed Healthcare

A creative project raising the voices of people with Severe ME, highlighting that the NHS has not implemented NICE Guidance of 2021 (NG206)

nicecollages.portfoliobox.net

Please could you support @tessamunt.bsky.social amendment Clause 47 of the Health Bill? This would make it possible to have vital clinical needs & adjustments on patient record. Things like this are vital. Eg “adjustments for severe noise or light sensitivity” “will arrive with stretcher transport”

🖊️That’s a picture of my stepdad reading my book shortly before his death. He was a prodigious reader, and as his health was failing told me, “I’m not ready to die, Earl, there are so many books I haven’t read yet! Happy Father’s Day, good man. You were one for the books.

My tips for keeping cool (incase they’re useful to anyone!)🤞🏼🌡️

Lizzy@hopefullizzy.bsky.social · 2mo ago

Thinking of you all. Stay safe in this coming heatwave. X

Thinking of you all. Stay safe in this coming heatwave. X

Please watch this short video & engage your MPs if able. Tag them, write to them, this is urgent. www.youtube.com/watch?v=YoCT... @meactionuk.bsky.social “people with SevereME have no treatment, no hospital beds, no specialist, no NHS service. Stop the deaths. Stop the harm. Start the service.”

#MEAction UK lights up London for Very Severe Myalgic Encephalomyelitis (ME)

YouTube video by MEActionUK

youtube.com

Stop the harm, Stop the deaths, Start the service Share this video - lobby your MP and @jamesmurrayldn.bsky.social Find out how here shorturl.at/I7Rwk Let’s make our voices heard! #MyalgicEncephalomyelitis #VerySevereME youtu.be/YoCT_K66Ul0

@kerrymp.bsky.social @tessamunt.bsky.social @jamesmurrayldn.bsky.social #starttheservice #myalgicencephalomyelitis #MECFS #severeME Proud to have been a small part of this. We need change.

MEAction UK@meactionuk.bsky.social · 2mo ago

Stop the harm, Stop the deaths, Start the service Share this video - lobby your MP and @jamesmurrayldn.bsky.social Find out how here shorturl.at/I7Rwk Let’s make our voices heard! #MyalgicEncephalomyelitis #VerySevereME youtu.be/YoCT_K66Ul0

It's strange to me that Matt Goodwin seems to be on the BBC more than Hannah Spencer when he lost an election to her

We have asked you to contact your MP using our advocacy guides (link to our full guide shorturl.at/9lhU7 or to our shorter guide here shorturl.at/pxwux). This is showing results so please keep doing it if your energy allows.

We have asked you to contact your MP using our advocacy guides (link to our full guide shorturl.at/9lhU7 or to our shorter guide here shorturl.at/pxwux). This is showing results so please keep doing it if your energy allows..

We have asked you to contact your MP using our advocacy guides (link to our full guide shorturl.at/9lhU7 or to our shorter guide here shorturl.at/pxwux). This is showing results so please keep doing it if your energy allows..

More locations, photographs and videos coming soon! shorturl.at/NiQ90 #MillionsMissing

More than light - voice for the voiceless. Last night, #MEAction UK took to the streets of London to urge @jamesmurrayldn.bsky.social to 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.

“Claras arrived today she was thrilled and it really made her smile ❤️ thank you from the bottom of our hearts xxx”

“THANK YOU so much for my Smile package which arrived today! So lovely and unexpected and definitely brought a smile to my face 😊😊😊 Very kind of “anonymous” and very kind of Smile for ME too.”

"Thank you so much for my beautiful box of treats in memory of Merryn. They are all absolutely perfect & will help me so much so thank you. The personalised bag is beautiful 💖 i will honestly treasure it all thank you for your kindness & time that was put into this 🥹💖"