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thereforme.bsky.social
ThereForME
@thereforme.bsky.social
1.6K followers 65 following 330 posts
Calling for an NHS that's there for Long Covid & Myalgic Encephalomyelitis (ME) | www.thereforme.uk
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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
lucibee.bsky.social
As Karen points out in her blog, the lack of (or extreme difficulty obtaining) CHC funding for people with very severe ME is another failure of the #MEDeliveryPlan.

The Plan simply does not mention it.

Astounding. 😖
February 10, 2026 at 3:21 PM
Reposted by ThereForME
drelke.bsky.social
A harrowing account of applying for care funding for severe ME

#LongCovid
#ME
In my view, a lack of knowledge about ME has also been influential; in particular, a lack of understanding that PEM can lead to long-term deterioration (and has done on several occasions, in James' case). This means that the risks involved in his care and the level of complexity have not been recognised, and nor has the extent of his limitations. Most difficult to read in our most recent rejection was a persistent framing of James' needs as preferences: that he prefers not to verbalise and that he does not like having people in his room with him. Would they say someone with a severe nut allergy does not like peanut butter? That an asthmatic prefers not to breathe?
February 10, 2026 at 10:37 AM
Reposted by ThereForME
nickbenton.bsky.social
'...in a context where the NHS is not equipped to provide James with any meaningful medical treatment, isn’t covering the costs of the care he needs to avoid further deterioration the very least they could do?'

So sorry to read this but so grateful to Karen for sharing it.
thereforme.bsky.social ThereForME @thereforme.bsky.social · 3d
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.

She explains why CHC funding for very severe ME is an issue that deserves attention.

🔗 in next post 👇
A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.
February 10, 2026 at 9:48 AM
Reposted by ThereForME
cabruce.bsky.social
‘Let me blunt: everything about how the NHS handles ME is broken. From the perspective of a patient and carer, everything is on fire.’
February 10, 2026 at 9:35 AM
thereforme.bsky.social
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.

She explains why CHC funding for very severe ME is an issue that deserves attention.

🔗 in next post 👇
A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.
February 10, 2026 at 9:19 AM
Reposted by ThereForME
tessamunt.bsky.social
Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation.

The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?
February 5, 2026 at 5:37 PM
Reposted by ThereForME
actionforme.bsky.social
1/4

📢 APPG on ME announcement

As many of you will already be aware, @tessamunt.bsky.social MP has officially been appointed Chair of the APPG on ME, following the group’s Annual General Meeting last week 🤝

#APPG #MyalgicEncephalomyelitis

⬇️
Panoramic image of the Houses of Parliament and Big Ben under a blue sky. Logos for Action for ME, the ME Association and the APPG on Myalgic Encephalomyelitis appear at the top. Text reads: “APPG on ME update: Annual General Meeting and 2026 schedule”. The Chair, officers, and members of the APPG on ME stand alongside representatives from the joint-Secretariat, at the group's 2026 AGM.
January 30, 2026 at 11:00 AM
Reposted by ThereForME
medidier.bsky.social
Yeeee :) new entry by @thereforme.bsky.social with updates from the politics front with the always urgent push for abandoned severe #pwME
Campaign update #29: News to help combat the January blues
It’s been a while since our last update.
www.thereforme.uk
January 27, 2026 at 10:14 AM
thereforme.bsky.social
Todays #ThereForME blog shares the latest updates from Westminster, as well as our favourite recent spots from the research world and wider community 👩‍🔬📝

Link in next post 👇
January 27, 2026 at 10:13 AM
Reposted by ThereForME
bexlogan.bsky.social
www.thereforme.uk/p/too-ill-to...
A bit about me & my journey living with Long Covid ME in Northern Ireland. @thereforme.bsky.social
Too ill to treat?
A former nurse shares her experiences campaigning for better care in Northern Ireland
www.thereforme.uk
January 22, 2026 at 2:49 PM
thereforme.bsky.social
Big congratulations to @tessamunt.bsky.social!

Tessa has been an incredible advocate for the community and we look forward to working with her in this new role 🙌
tessamunt.bsky.social Tessa Munt MP 🔶 @tessamunt.bsky.social · 23d
Honoured to be elected as Chair of the APPG ME today. I’m grateful to have @JoPlatt.bsky.social continue to serve as an officer, facilitating continued coordination with the APPG Long COVID, and the support of @actionforme.bsky.social and @meassociation.org.uk through providing the Secretariat.
January 22, 2026 at 6:56 AM
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
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 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 · Dec 22
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 · Dec 22
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 · Dec 22
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
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
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