Excellent blog on the 2025 Big Survey by @kacheston.bsky.social which explains how the info shared by #pwME will be used & how it helps all pwME The survey is a great opportunity to share your experience & recommendations & generally rant if you need to 🔗📋👇 www.actionforme.org.uk/research-cam...

Fantastic to see this post from our v. own @kacheston.bsky.social on the @thereforme.bsky.social Substack. If you live with ME or Long Covid with ME symptoms, there is still time to take part in the @actionforme.bsky.social Big Survey (closes 27 Jan) Take part here: tinyurl.com/2025-Big-Sur...

Thank you so much @thereforme.bsky.social for publishing this post about @actionforme.bsky.social's Big Survey! The Big Survey is open until 27 January. If you're yet to fill it out, we would love to hear from you! www.actionforme.org.uk/research-cam...

Our #ThereForME blog is back! Today, Dr Katharine Cheston writes about her collaboration with @actionforme.bsky.social on the 2025 Big Survey. Katharine explains why large-scale charity surveys are so important for ME research and treatment, and how you can get involved. Link in next post 👇

December 24th. Thank you for being #ThereForME, Rosie Barrett! Rosie is a carer to her sister Alice and was featured this year by BBC Spotlight championing our #FundThePlan campaign. Nominated by Lauren. ✨

Bonus points if you noticed our post for Dec 21 was missing! Here it is now: Thank you for being #ThereForME, Dr @binitakane.bsky.social ! Binita is a private consultant w a special interest in ME & Long Covid, a #ThereForME Ambassador + fierce advocate for pwME. Nom'ed by @alexisme.bsky.social#ThereForME#ThereForME✨

December 23rd. Thank you for being #ThereForME, Jenny Wilson! Jenny is a long-standing advocate for people with ME and plays a pivotal role organising Dr Weir’s ME clinic. Nominated by Phoebe. ✨

The decades long neglect of #pwME is a great injustice and we are all poorer for it. I’m proud to be one of the 72 LibDem MPs who have fought to address this. And I know that I’m not alone in committing to continuing the fight to see real change in 2026.

I nominated Sir Ed because the support ME and Long Covid communities have received from the Lib Dems has been exemplary. This ‘eMEy’ award is a testament to the culture of the party and its parliamentarians

When coming down with #ME 4y ago I felt betrayed and dissapointed by all parties in the UK like never before in my life. I have never been a 'one-issue' voter but the treatment of #pwME/LC is so scandalous and criminal, so disabling, that everything, including politics, reduced to that... 1/3

December 22nd. Thank you for being #ThereForME, Sir Ed Davey & the Lib Dems @libdems.org.uk! This year the LibDems have been key players championing the need for improved support for people with ME in parliament. Nominated by Jonah Weisz @weiszguy.bsky.social#ThereForME✨

December 20th. Thank you for being #ThereForME, Dr Jo Greer! Jo is the founder of the Red Leaf Creative Collaborative, a group of creatives that shares artistic expressions of hope for #PwME. Nominated by Shirley (and everyone at The Red Leaf Creative Collaborative). ✨

December 19th. Thank you for being #ThereForME, Joan McParland MBE! Joan is the founder and coordinator of Hope 4 ME & Fibro Northern Ireland. Nominated by Rebecca. ✨

December 18th. Thank you for being #ThereForME, Alice @smileformeuk.bsky.social#ThereForME Alice is the founder of Smile for ME, a charity that sends personalised presents (“Smiles”) to people with ME and their carers. Nominated by Team SalShirl ✨

December 17th. Thank you for being #ThereForME, @georgemonbiot.bsky.social! George is a well-known journalist who has focused on uncovering the reality of the “greatest medical scandal of the 21st Century”. Nominated by Carole B @cabruce.bsky.social#ThereForME ✨

December 16th. Thank you for being #ThereForME, Fran Haddock! Fran lives with severe ME and is a tireless advocate for the community. Nominated by Wren. ✨

December 15th. Thank you for being #ThereForME, Nicky Proctor! Nicky is an advocate for people with ME, who volunteers with various ME organisations - including #ThereForMe. Nominated by Odette & the York ME Community slow-lane.bsky.social#ThereForME#ThereForMe✨

December 14th. Thank you for being #ThereForME, Marlene! Marlene was nominated by her son Gav, who is affected by ME. ✨

Jan and the @wamesmecfs.bsky.social team are amazing and do so much for #PwME across #Wales 💙 Thank you so much! 🥰

December 13th. Thank you for being #ThereForME, Jan Russell @wamesmecfs.bsky.social! Jan is Chair of the Welsh Association of ME and CFS Support (WAMES). Nominated by @deemontague.bsky.social#ThereForME✨

December 12th. Thank you for being #ThereForME, Rowan Wyatt! Rowan was nominated by his partner Keren. ✨

December 11th. Thank you for being #ThereForME, @decodemestudy.bsky.social#ThereForME! Earlier this year the team, based at the University of Edinburgh, released groundbreaking research findings, revealing distinct genetic signals in people with ME. Nominated by Michael. ✨

Tessa & team asked us to provide a briefing for the APPG meeting yesterday on gaps in the delivery plan for people with severe & very severe ME. Big thanks to Tessa for stepping up to lead on this issue 🙏 We agree, Tessa. After decades of neglect, let’s get on with it!

Delighted to see our founder @salwitcher.bsky.social in the #ThereForME advent calendar, nominated by @murtoz.bsky.social, a member of our INN the Benefits System group. Many thanks to Social Security Scotland & for listening to us & Edel Harris for including our input in her ADP review report.

Honoured to be featured in the #ThereForME advent calendar! Huge thanks to @murtoz.bsky.social for the nomination🙏. Inspiring to work with people like you, with lived experience of ME & pandemic disability, via @inclusivenew.bsky.social & we're so grateful to those who've listened.

This will be available to watch here www.senedd.tv/Meeting/Live... We are hoping that the response from the Welsh government will benefit all patients in Wales and may serve as model for rest of UK. #MEcfs #LongCovid @actionforme.bsky.social @meassociation.org.uk @thereforme.bsky.social

December 10th. Thank you for being #ThereForME, Dr Sally Witcher @inclusivenew.bsky.social#ThereForME Sally is the founder of Inclusive New Normal, a social enterprise aiming to drive forward learning from the pandemic, towards a safe, inclusive new normal. Nominated by Michiel. ✨

Been struggling to keep up with our advent calendar? You can read our recap of the past week’s advent calendar stars 👇 www.thereforme.uk/p/2025-adven...

December 9th. Thank you for being #ThereForME, Frank Docherty! Frank was nominated by his wife Susan for his invaluable support since she developed ME. ✨

December 8th. Thank you for being #ThereForME, @sarahgibsonmp.bsky.social#ThereForME Sarah is the LibDem MP for Chippenham and was nominated by her constituent, Tess. ✨

December 7th. Thank you for being #ThereForME, Karin Hilton! Karin was nominated by her friend Lisa, who is affected by ME. ✨

Truly profound respect for those within the medical system that manage to remain empathic - and follow their vocation - towards #pwME despite having everything in the system desincentivising them. I have not crossed many of those humane souls myself, but when I did it felt miraculous.

December 6th. Thank you for being #ThereForME, Pauline White! Nominated by the Barretts ✨

Next week’s APPG meeting will involve MPs coming together to discuss how they can work together to promote these two issues. The more MPs attending the better, so (if you have the energy) emails to your MPs are always helpful to encourage them to attend👇

December 5th. Thank you for being #ThereForME, Tony White! Nominated by Tracey @traceydooley.bsky.social#ThereForME ✨

December 4th. Thank you for being #ThereForME, Anna Redshaw! Nominated by Charlotte. ✨

December 3rd. Thank you for being #ThereForME, Alexis Gilbert! Nominated by Becky Wlliams ✨

Thank you @thereforme.bsky.social and @hopefullizzy.bsky.social for recognising the wonderful Mel! 🧡 🙌

December 2nd. Thank you for being #ThereForME, Melanie Di Luca @actionforme.bsky.social! Nominated by @hopefullizzy.bsky.social#ThereForME✨

December 1st. Thank you for being #ThereForME, Sue! Nominated by her mum, Sarah. ✨

It starts tomorrow #thereforME! 🌿🙇‍♂️

Our #ThereForME Advent Calendar wonderful people who have been #ThereForME starts tomorrow! To start us off, we'd like to share this reflection kindly written for us by Jenny Wilson, who many know as a fierce advocate for the community working closely with Dr Weir.

A week ago the Westminster Hall debate on ME was held. Thank you to all those who have watched the debate and sent messages of encouragement. I’ve now written to the minister, Ashley Dalton, about the meeting she promised. And I have sent her the questions in my speech. 👇🏽 I’ll keep you posted.

🚨 The APPG evidence session on severe ME has been rescheduled to 10 December 👇

I'll say it again: what @thereforme.bsky.social continue to do in just 1 year for #pwME is astonishing. It is giving us so much dignity back. Huge milestone last week with @tessamunt.bsky.social and other MPs (& a *little* push coming from Germany...) ⤵️⤵️ www.thereforme.uk/p/campaign-u...

Today's #ThereForME blog shares our takeaways from last week's Westminster Hall debate, tabled by @tessamunt.bsky.social 👇

A massive thank you to @tessamunt.bsky.social for tabling this debate on #ME - for listening to patients & advocates and representing the community so well. Also to @joplatt.bsky.social and every other MP who showed up and talked so compassionately about their constituents. youtu.be/wZFEUnjWgOA?...

📺 Westminster Hall Debate on ME today at 16:30 #ThereForMP @tessamunt.bsky.social will be leading the debate today focused on government support for #PwME You can tune in here 👇 www.parliamentlive.tv/Event/Index/...

🎙️ME Debate TODAY! 🏛️ Westminster Hall 🕓 4.30pm (UK time) Led by @tessamunt.bsky.social MP 📺 To watch:

Yma o hyd #StillHere #LongCovid 🫂💚