ThereForME
LightNews LightNews
banner
thereforme.bsky.social
ThereForME
@thereforme.bsky.social
1.6K followers 65 following 320 posts
Calling for an NHS that's there for Long Covid & Myalgic Encephalomyelitis (ME) | www.thereforme.uk
Posts Replies Media Videos
Pinned
thereforme.bsky.social
ThereForME @thereforme.bsky.social · Jul 23
Today we’re celebrating a year to the day since @karenlhargrave.bsky.social & @emmagl.bsky.social launched #ThereForME!

We had a busy day yesterday responding to the Delivery Plan release. It’s clear how much more our campaign has left to do - but today we’re reflecting on what we’ve done so far
One year ago we launched #ThereForME, calling for an NHS that’s there for people with ME & Long Covid. What have we done so far?
Reposted by ThereForME
katybrc.bsky.social
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...
January 13, 2026 at 4:47 PM
Reposted by ThereForME
durhamimh.bsky.social
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...
January 13, 2026 at 12:01 PM
Reposted by ThereForME
kacheston.bsky.social
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...
January 13, 2026 at 10:37 AM
thereforme.bsky.social
www.thereforme.uk/p/action-for...
Action for ME’s 2025 Big Survey
Why large-scale charity surveys are so important for ME research and treatment
www.thereforme.uk
January 13, 2026 at 9:31 AM
thereforme.bsky.social
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 👇
"Working with Action for ME on the Big Survey, I've been struck by the important role that large-scale, charity-led surveys like this can play in building a clearer picture of what life with ME is really like - and in providing the evidence that can drive change." Dr Katharine Cheston. New #ThereForME Substack post.
January 13, 2026 at 9:31 AM
thereforme.bsky.social
🙏
December 24, 2025 at 4:45 PM
thereforme.bsky.social
Rosie wrote a briliant piece for us recently on the challenges of accessing healthcare for those with v severe ME: www.thereforme.uk/p/sensory-he...
December 24, 2025 at 9:01 AM
thereforme.bsky.social
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. ✨
Photo of a smiling lady wearing a Santa hat in a polaroid-style frame on a starry background, marked with a bright star labelled ‘24’. Text says: ‘Thank you for being #ThereForME, Rosie Barrett!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “You are a carer for your sister, Alice, & you still find time to be an incredible advocate for her & the ME community. You have spoken on the news, you have started petitions & you have raised awareness of ME charities. Thank you ❤️” Hashtag #ThereForME at the bottom.
December 24, 2025 at 9:00 AM
thereforme.bsky.social
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. ✨
Photo of a smiling woman in a polaroid-style frame on a starry background, marked with a bright star labelled ‘21’. Text says: ‘Thank you for being #ThereForME, Dr Binita Kane!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Your advocacy and care have made the world of difference to my experience of having ME, while your compassion and skill continue to improve the lives of so many people with ME and Long Covid. Thank you for all that you do for the community. Alexis.”
December 23, 2025 at 5:00 PM
thereforme.bsky.social
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. ✨
Photo of a smiling lady in a polaroid-style frame on a starry background, marked with a bright star labelled ‘23’. Text says: ‘Thank you for being #ThereForME, Jenny Wilson!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “No one will believe the RESISTANCE; the quiet front, the charming little lady who goes nowhere, writes and speaks beautifully, belying a force of nature ten thousand hearts strong. Linking, doctoring, remembering, writing, saving hearts with ME.” Hashtag #ThereForME at the bottom.
December 23, 2025 at 9:00 AM
Reposted by ThereForME
tessamunt.bsky.social
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.
thereforme.bsky.social ThereForME @thereforme.bsky.social · 25d
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 ✨
Photo of a smiling man wearing a pink shirt in a polaroid-style frame on a starry background, marked with a bright star labelled ‘22’. Text says: ‘Thank you for being #ThereForME, Sir Ed Davey & the Lib Dems!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Thank you Ed Davey & the Lib Dems for being #ThereForME! We were overwhelmed, but not surprised, to see how quickly all 72 MPs signed Tessa Munt's letter on the Delivery Plan. Thank you, Sir Ed, for encouraging a supportive culture that has enabled the party to stand so firmly with people with ME.” Hashtag #ThereForME at the bottom.
December 22, 2025 at 11:56 PM
Reposted by ThereForME
weiszguy.bsky.social
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
thereforme.bsky.social ThereForME @thereforme.bsky.social · 25d
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 ✨
Photo of a smiling man wearing a pink shirt in a polaroid-style frame on a starry background, marked with a bright star labelled ‘22’. Text says: ‘Thank you for being #ThereForME, Sir Ed Davey & the Lib Dems!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Thank you Ed Davey & the Lib Dems for being #ThereForME! We were overwhelmed, but not surprised, to see how quickly all 72 MPs signed Tessa Munt's letter on the Delivery Plan. Thank you, Sir Ed, for encouraging a supportive culture that has enabled the party to stand so firmly with people with ME.” Hashtag #ThereForME at the bottom.
December 22, 2025 at 10:54 AM
Reposted by ThereForME
medidier.bsky.social
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
thereforme.bsky.social ThereForME @thereforme.bsky.social · 25d
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 ✨
Photo of a smiling man wearing a pink shirt in a polaroid-style frame on a starry background, marked with a bright star labelled ‘22’. Text says: ‘Thank you for being #ThereForME, Sir Ed Davey & the Lib Dems!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Thank you Ed Davey & the Lib Dems for being #ThereForME! We were overwhelmed, but not surprised, to see how quickly all 72 MPs signed Tessa Munt's letter on the Delivery Plan. Thank you, Sir Ed, for encouraging a supportive culture that has enabled the party to stand so firmly with people with ME.” Hashtag #ThereForME at the bottom.
December 22, 2025 at 10:52 AM
thereforme.bsky.social
Image credit: www.libdems.org.uk/ed-davey/story
December 22, 2025 at 9:00 AM
thereforme.bsky.social
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 ✨
Photo of a smiling man wearing a pink shirt in a polaroid-style frame on a starry background, marked with a bright star labelled ‘22’. Text says: ‘Thank you for being #ThereForME, Sir Ed Davey & the Lib Dems!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Thank you Ed Davey & the Lib Dems for being #ThereForME! We were overwhelmed, but not surprised, to see how quickly all 72 MPs signed Tessa Munt's letter on the Delivery Plan. Thank you, Sir Ed, for encouraging a supportive culture that has enabled the party to stand so firmly with people with ME.” Hashtag #ThereForME at the bottom.
December 22, 2025 at 9:00 AM
thereforme.bsky.social
See more from the Red Leaf Creative Collaboration - theredtreeandme.substack.com
December 20, 2025 at 9:00 AM
thereforme.bsky.social
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). ✨
The Red Tree and ME logo in a polaroid-style frame on a starry background, marked with a bright star labelled ‘20’. Text says: ‘Thank you for being #ThereForME, Dr Jo Greer!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Thank you Jo for all your work through The Red Tree and M.E , for the awareness and inspiration it provides, creating hope, solidarity, strength and a driving force for action “one red leaf at a time” 🍂 ” Hashtag #ThereForME at the bottom.
December 20, 2025 at 9:00 AM
thereforme.bsky.social
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. ✨
Photo of a smiling lady in a polaroid-style frame on a starry background, marked with a bright star labelled ‘19’. Text says: ‘Thank you for being #ThereForME, Joan McParland!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Joan, You are an inspiration to me & many ME sufferers across NI & beyond. You've founded an amazing charity in Hope 4 ME & Fibro NI & campaigned tirelessly for decades to raise awareness despite living with ME yourself. Lots of love, Rebecca” Hashtag #ThereForME at the bottom.
December 19, 2025 at 9:00 AM
thereforme.bsky.social
December 18th. Thank you for being #ThereForME, Alice @smileformeuk.bsky.social!

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 ✨
Photo of a smiley lady in a polaroid-style frame on a starry background, marked with a bright star labelled ‘18’. Text says: ‘Thank you for being #ThereForME, Alice@SmileForME!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Alice, Thank you for bringing so many smiles to people with M.E. 😊 Your generosity, compassion and kindness shines through your beautifully chosen gifts. Thank you for everything you bring to the M.E community through Smile for ME. X💙🩵x” Hashtag #ThereForME at the bottom.
December 18, 2025 at 9:00 AM
thereforme.bsky.social
George's article of March 2024: www.theguardian.com/commentisfre...
December 17, 2025 at 9:00 AM
thereforme.bsky.social
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. ✨
Photo of a man in a scarf in a polaroid-style frame on a starry background, marked with a bright star labelled ‘17’. Text says: ‘Thank you for being #ThereForME, George Monbiot!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Dear George, Your writing, your videos and your interest in the plight of ME sufferers is unsurpassed. You have all the facts coupled with understanding and humanity that makes us all feel really seen and safer with your backing. Thank you. ” Hashtag #ThereForME at the bottom.
December 17, 2025 at 9:00 AM
thereforme.bsky.social
You can read our regular recap of our past week of advent calendar doors here 👇

www.thereforme.uk/p/2025-adven...
2025 Advent Calendar: Week #3
We're opening the third week of doors on our #ThereForME advent calendar
www.thereforme.uk
December 16, 2025 at 9:21 AM
thereforme.bsky.social
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. ✨
Photo of a lady dressed in purple in a polaroid-style frame on a starry background, marked with a bright star labelled ‘16’. Text says: ‘Thank you for being #ThereForME, Fran Haddock!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Dear Fran, Through absolutely everything, I’ve been amazed at your constant effort to show up for your friends and your community. You care more than anybody I’ve ever met, and you motivate me to be so much braver, kinder and louder. Love you xx” Hashtag #ThereForME at the bottom.
December 16, 2025 at 9:01 AM
thereforme.bsky.social
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. ✨
Photo of a smiling long-haired lady in a polaroid-style frame on a starry background, marked with a bright star labelled ‘15’. Text says: ‘Thank you for being #ThereForME, Nicky Proctor!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Nicky, you're a supreme advocate for pwME - continuously striving to educate, inform & instigate change across every sector & level, be it friend/peer groups to healthcare providers & their management plus local MPs. You are amazing in every way. ” Hashtag #ThereForME at the bottom.
December 15, 2025 at 9:00 AM
thereforme.bsky.social
December 14th. Thank you for being #ThereForME, Marlene!

Marlene was nominated by her son Gav, who is affected by ME. ✨
Photo of a smiley lady in a polaroid-style frame on a starry background, marked with a bright star labelled ‘14’. Text says: ‘Thank you for being #ThereForME, Marlene!’ and ‘Advent Calendar 2025’. Graphic of a letter on a starry blue background. The letter says “Mum - thank you for supporting me unconditionally, for looking after my pets and for cleaning my house when I couldn’t. Your unwavering support when I was finding it hard to shine makes you being my Mum sublime. X ” Hashtag #ThereForME at the bottom.
December 14, 2025 at 9:00 AM