Incredible talk here at the #UNGA80 #indoorair call to action from our very own Violet Affleck! Reminding us that #longcovid affects all of us, the #covid19 pandemic is ongoing and we have failed to protect our children. Thank you, Violet, for speaking the truth to this room 🙏🏻

Today's #ThereForME blog shares findings from a mini survey. We asked carers and clinicians with experience supporting people with v severe ME whether the Health Secretary should commission a service for v severe ME - and if so, what it should look like. Link in next post 👇

Want to understand the #GreatestMEdicalScandal in one sentence? "Most said they would be unsure about accessing a specialist service due to the risk of inappropriate care causing harm to their loved one" Read it in the latest @thereforme.bsky.social update --> www.thereforme.uk/p/commission...

#SafeAir4All In collaboration with @gmhazardscentre.bsky.social we've produced a fact sheet for MPs. #SafeAir4All campaign Can you contact your MP about the need for safe air in healthcare settings? Find out more here: shh-uk.org/get-in-touch...

1/5 📢 Early Day Motion (EDM) tabled on the Final Delivery Plan We’re pleased to see this EDM tabled by @tommorrisonmp.bsky.social to discuss the Final Delivery Plan on ME/CFS. #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #EDM ⬇️

Thinking of Savannah and hoping all clinicians and advocates can work together “at pace” (as government likes to say) for her best interests in accordance with needs of someone with severe ME. 💙

🌟 Exciting News! We’re thrilled to announce the upcoming YE International Workshop Series – Vienna 2025 🎉 📍 Vienna, Austria 📆 27–28 November 2025 Join us as we bring together early career researchers in #MECFS to connect, collaborate & spark new ideas! 🔬✨ #SaveTheDate #MECFS #MEresearch #ECR

Martha Mills was one of my favourite people. She should have had her 18th birthday today. Her parents have campaigned tirelessly to improve healthcare so that others won’t experience what they did. They are heroes.

Following @decodemestudy.bsky.social's success, it's vitally important that the Government commits to strategic research funding & we'll continue our calls for a national research platform Thank you @johnmilnehorsham.bsky.social for leading on this call to the Secretary of State 🙏

Seeking a Project Manager for the PRIME project: "Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs elxw.fa.em3.oraclecloud.com/hcmUI/Candid...

2/2 Those giving evidence have been identified via service users, the 25% ME Group & wider networks. Evidence will be shared in written, recorded or live formats. Minutes will be published after on the APPG website. #pwME #MyalgicEncephalomyelitis #APPG

1/2 📢 APPG on ME 📆 Wed 10 Sept | ⏰ 4pm The Group will open its enquiry into severe ME, hearing directly from people with lived experience. 👉 Ask your MP to attend: appgme.co.uk/contact-your... #SevereME #MECFS ⬇️

🔥 Please share - Very important care campaign for those with severe & very severe ME: "Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness" #pwME ♥️💙🫂 www.crowdjustice.com/case/justice...

The Bear Tapestry

People without #MECFS have been asking why this project is called Lives We Cannot Live. #PwME Showing at Oxo Tower Gallery London from 24/9/25 More info mailchi.mp/16f8611232cc... #socialdocumentary #documentaryphotography #invisibleillness

Very grateful to the @theguardian.com Science Weekly team and of course the excellent @decodemestudy.bsky.social for this breakthrough science. podcasts.apple.com/gb/podcast/s...

Any chance you could alert Leeds Hospital to this please, shared by MEAssociation (a rare endorsement for an individual’s case). www.change.org/p/the-nhs-mu...

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...

Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt. Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them. 1/4

The Coroner (a DCC employee based at County Hall) refused to call the key witness from social services. Juliette Hill could have prevented Maeve's premature death if she had been guided by her statutory duty to protect the most vulnerable in society. Hill was under investigation by Social Work 2/4

Safeguarding records for the final year of Maeve’s life show social workers, nurses and a mental health assessor, instead of focusing on managing Maeve’s ME, were investigating concerns about Boothby. (£) www.thetimes.com/uk/healthcar... #MEcfs #LongCovid

(2/2)

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

We are listening to the experiences of people in Leeds living with multiple long-term health conditions. Katie and Jude have been working with us to carry out interviews and gather people’s stories. You can share your experiences too: re-url.uk/W4TL #HealthwatchLeeds #LongTermConditions

Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!

Scientific reaction from Prof Kevin McConway (Applied Statistics) and, I understand, soon from Prof Alan J Carson (Neuropsychiatry), now posted. Prof Carson's critique misunderstands our methods, as Prof McConway's comments make clear. www.sciencemediacentre.org/expert-react...

Almost a 1000 listeners for our Samuelson podcast in 7 days. Not too bad. Free resources for Economics...what's not to like? If you have students that you want to stretch & challenge, then get them to have a listen. Economics should be for everyone & we're trying to make that happen. #EconSky

Upcoming 2025 Events www.renegade-research.org/events-list Questions? Are you an #MD who specializes in longCovid and/or ME/CFS and you're interested in speaking at a future Roundtable? Email: [email protected] Past Clinician & Research Roundtables m.youtube.com/@remissionbi... #medsky

Sore #muscles? Find out more in this webinar tomorrow! March 28, 2025 - Research Roundtable: The Acid Test - a Patient-led Study about #Lactate Register at renegade-research.org/events-list Follow @sunsopeningband.bsky.social and @ciarawrightphd.bsky.social

🌟Super article out from #ThereForME covering the momentum for #FundThePlan & the community campaigning together for Long Covid Awareness including: 💙 Our #Postcards4LC 💙 The @lcmebillboards.bsky.social Light Up Challenge 💙 @longcovidsupport.bsky.social banner & launch event

Dear @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social. My partner is missing from his life. Please, #FundThePlan 💙 #MyalgicEncephalomyelitis #LongCovid #lyme @thereforme.bsky.social

We’d love your help asking allies in your life, and the wider world, to get involved and stand with people with ME as we ask the government to #FundThePlan. We’ve even got a new template script for the occasion 👇

We’ve been amazed watching the incredibly powerful #FundThePlan videos being shared by people with ME and carers. It’s clear PwME want change. Now we’re asking allies, whether friends, healthcare workers or public figures, to join us. It’s time for #FundThePlan: Ally edition

When a Dr comes out and says this, you know the situation is dire! #FundThePlan We need funding to deliver the research, education & services promised 3 years ago and neglected for decades! #FalseEconomy not to do so! £billions lost to economy plus human cost. #FundThePlan

Dear @rthonwesstreeting.bsky.social & @ashleydaltonmp.bsky.social Today I am asking for you to ensure the Delivery Plan for ME is enacted to ensure there is an improvement in the care for M.E. patients. #FundThePlan #ThereForME @thereforme.bsky.social

You’re welcome. podfollow.com/1785871486

How long can it take to stocktake something non-existent?

We'd also love to see your creative ways to get involved if making a video of yourself isn't possible - whether that's, recording a video without your face in shot or sharing a message in writing. Don't forget to tag us, use the hashtag and make some noise! #FundThePlan

We know this won't be feasible for all. Our hope is that those able to can advocate for others. If you’re too ill to make a video, please know there's zero obligation to do so. If you have a friend or loved one who could help, here's a vid Karen made for her husband James 👇

🎥 Today we’re launching our #FundThePlan campaign! With over a month until the delivery plan is finalised, ministers can still reconsider the resources behind it.  We want to show them why it is important to #FundThePlan. Share a video on social media using our template ⬇️

For inspiration - here’s one we made earlier with help from @nickyproctor.bsky.social! 👇

"Thousands of patients in dark rooms are looking to the government to prove it is on their side." Writes @helenmorganlibdem.bsky.social With no further funding for the ME delivery plan, will it just be more tokenism & dismissal for #pwME? To read more: archive.ph/a3iYo

‘No extra cash for new services or research’. #ME #DeliveryPlan The Times today. www.thetimes.com/article/0612...

ME/CFS stands for My Endless Cunting Fucking Shite.

Today’s #ThereForME blog is from an anonymous healthcare worker She shares her experiences of developing #ME following a Covid infection and ideas for what an NHS that’s #ThereForME would look like. www.thereforme.uk/p/designing-...

@doctoroxford.bsky.social your article mentioned in BBC Radio 4 “The Westminster Hour” tonight, around 44 mins in. Thanks for highlighting the “threadbare” nature of palliative care provision.

I find it incredibly hard to accept the limits ME opposes and I’m always pushing at them. The result is that I’ve gone from mild to moderate to severely ill and I’m now pretty much housebound. Don’t let it happen to you. Listen to your body and always go for less exertion rather than more.

This visual shows UK gov funding levels for different diseases over time - analysis by @mediumwhite.bsky.social 💸 It shows how paltry funding for ME has been, especially considering that data from the US suggests the ME disease burden is larger than for the other 3 *combined* 😅 #MECFS #LongCovid