iiinova — where your digital self keeps evolving

ThereForME @thereforme.bsky.social · 06/10/2026

Inside ThereForME Update No. 36: George Monbiot's Guardian piece about what has changed for people with ME since the 2021 NICE guideline, and our letter in response Policy watch: Scotland's implementation gap, and Burnham’s national care service plans PLUS...

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ThereForME @thereforme.bsky.social · 01/10/2026

The Guardian has published our letter responding to George Monbiot's article about how people with ME are abandoned, dismissed and gaslighted. We point out the inadequate political attention, and call for action from the Health & Social Care Select Committee. www.theguardian.com/society/2026...

George Monbiot is right to draw attention to the “shocking social crisis playing out behind closed doors” for people living with ME. Not only is ME a devastating condition, but too often those affected are failed by the very systems meant to care for them.

The level of political attention the issue has received is nowhere close to the scale of the problem. The government’s strategy on ME, published over a year ago, lacked both substantive funding and outcome targets. Its key action for those affected by the most severe form of ME – “exploring” whether a specialised service could be commissioned – is now delayed until April 2027. We hope that, as a first step, the health and social care select committee will take up this critical issue as a matter of urgency.
Karen Hargrave and Emma Gore-Lloyd
Co-founders, ThereForME charity

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ThereForME @thereforme.bsky.social · 30/09/2026

Planning a charity challenge, event or birthday fundraiser? It just got easier to support us! 🎉 You can now select ThereForME as your chosen cause when setting up your fundraising page on JustGiving.

New! Planning a fundraiser? You can now select ThereForME as your chosen cause on JustGiving! Download an A3 poster to print at home/work. You can also edit & download our fundraising poster and social media templates in Canva.

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ThereForME @thereforme.bsky.social · 25/09/2026

Are you keen to share your experiences of adult social care? If you’d be interested to write for us (500 words max), let us know 👇

We want to hear from you! Are you keen to share your experiences of adult social care? We’re looking for 1 or 2 contributors for an upcoming post. If you’d be interested to write for us (500 words max), let us know! ThereForME.

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ThereForME @thereforme.bsky.social · 24/09/2026

We wanted to say a big thank you for all of your support since our charity announcement yesterday! We've had so many kind messages, and we're so grateful for all of the donations we've received so far. A big, big thank you from the team - this community is the best 🫶

A big thank you from us for all your support so far! ThereForME. ThereForME is a CIO registered in England and Wales. Registered Charity No. 1218590.

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ThereForME @thereforme.bsky.social · 23/09/2026

We're excited to share something we've been working on for a while. ThereForME is now a registered charity! 🥳 1/4

We’ve got news!

ThereForME is now a registered charity.

ThereForME is a Charitable Incorporated Organisation
registered in England and Wales. Registered Charity No. 1218590.

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ThereForME @thereforme.bsky.social · 18/08/2026

In our work with #ThereForME, we come across many people with ME and Long Covid who face challenges accessing social care support. Today's guest post shares stories from three authors from across the UK. Thank you to Cass, Marianne and our anonymous contributor for sharing your experiences 💙

"My experience of trying to access [social care] support has left me feeling unsafe, excluded from decisions and traumatised. It has also contributed to unnecessary deterioration in my health" Anonymous. New #ThereForME Substack post.

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ThereForME @thereforme.bsky.social · 04/08/2026

"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 👇

#ThereForME Update 34. Year three of #ThereForME. The mission hasn't changed - but our advocacy must. New #ThereForME Substack post.

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ThereForME @thereforme.bsky.social · 21/07/2026

You may have noticed there's a new PM in town! Today's post from our co-founder @GoreLloyd on our #ThereForME blog outlines a problem his government will inherit when it comes to ME. Houston, we have a data problem. Link in next post 👇

"Data on ME matters because numbers drive resources and political attention. If the number under-represents the scale of the issue, the response will be insufficient." - Emma Gore-Lloyd, #ThereForME. New #ThereForME Substack post

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ThereForME @thereforme.bsky.social · 07/07/2026

Today's #ThereForME update unpacks the latest from Westminster. We share what’s been happening, why it matters for our community, and our pick of recent research news. Link in next post 👇

#ThereForME Update 33. All Change in Westminster. What's been happening in Westminster; Research round-up; Recommended listening. New #ThereForME Substack Post.

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ThereForME @thereforme.bsky.social · 23/06/2026

Today's #ThereForME guest blog is from Jemma Bella, a content creator whose posts about living with Long Covid have resonated with hundreds of thousands of followers. Jemma reflects on how she began sharing her experience online & why her content resonated. Link in next post 👇

"A huge part of what I hear now is that my content doesn't just validate and resonate with people themselves, but also helps the people around them understand a little better what they're going through". Jemma Bella, content creator. New #ThereForME Substack post.

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ThereForME @thereforme.bsky.social · 09/06/2026

We're back for our first #ThereForME Update in a while! Today we're sharing a roundup from ME Awareness Month (AKA May 📅) - from World ME Day events, to research announcements and ME in the media. Link in next post 👇

#ThereForME Update 32: ME Awareness Month. A round-up of World ME Day events, recent research announcements, and ME in the media. New #ThereForME Substack post.

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ThereForME @thereforme.bsky.social · 26/05/2026

🙌 Our #ThereForME blog is back from hiatus! In today's post, @karenlhargrave.bsky.social interviews Carolyn Leary, the new chair of Forward ME (a coordinating body for ME orgs). Carolyn explains how she got into ME advocacy, what you need to know about Forward ME and her future plans.

"My personal track for this year is that ForwardME must hold the government to account on the final delivery plan. We must do everything we can to keep challenging them on progress and process." Carolyn Leary, Chair of Forward ME. New #ThereForME Substack post.

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ThereForME @thereforme.bsky.social · 24/05/2026

“Very severe ME is quite a unique condition in that there is effectively no NHS specialist services that are available for someone in James’ position.” Our co-founder @karenlhargrave.bsky.social speaks to @theipaper.com about the financial cost of supporting a loved one with very severe ME.

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ThereForME @thereforme.bsky.social · 12/05/2026

We aren't running a campaign this year for World ME Day - but people affected by ME, and the immense suffering faced every day, are on our mind today as much as ever. We’ll be looking at how we can make the most of opportunities when we're back from hiatus later this month 💙

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ThereForME @thereforme.bsky.social · 26/03/2026

The patients who will suffer are some of the most vulnerable in society, They are facing yet another year without NHS care. We're committed to advocating on their behalf - and we are very clear that this is not good enough. cc @rthonwesstreeting.bsky.social @sharonhodgsonmp.bsky.social (3/3)

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ThereForME @thereforme.bsky.social · 26/03/2026

This is despite a ministerial recognition in the Delivery Plan of "tragically avoidable" deaths of people with ME in England and a commitment to make these "never events". Like many patients and carers, we're asking: where on earth is the urgency? (2/3)

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ThereForME @thereforme.bsky.social · 26/03/2026

This week we were informed by DHSC, alongside other organisations, that DHSC and NHS England have delayed discussions on commissioning a specialised service for very severe ME until April 2027. This means yet another year without NHS care for people with very severe ME. (1/3)

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ThereForME @thereforme.bsky.social · 19/03/2026

This week we’re celebrating the work of other advocates, researchers and organisations. Read this week's #ThereForME post to find out more about developments in research, Long Covid Awareness Day and a #ThereForME hiatus. 🔗 in next post 👇

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ThereForME @thereforme.bsky.social · 04/03/2026

We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.bsky.social. In her blog, Tessa lays out the case for change and how to get involved. Link in next post 👇

"Those with ME have experienced years of being treated unjustly. Sometimes, it feels endless and irreversible. But remember this: getting things done in parliament starts with having MPs on your side." Tessa Munt MP. New #ThereForME Substack post.

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ThereForME @thereforme.bsky.social · 17/02/2026

Today's #ThereForME blog takes stock progress in key areas six months on from the publication of the Final Delivery Plan for ME. We look at progress in terms of: ➡️ Improving care for severe and very severe ME ➡️ Boosting education and training ➡️ Accelerating research

Campaign Update 30: 6 months on from the Final Delivery Plan. What progress has been made? We look at 3 priority areas:
- Improving care for severe and very severe ME
- Boosting education and training
- Accelerating research
New #ThereForME Substack post

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ThereForME @thereforme.bsky.social · 10/02/2026

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.

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ThereForME @thereforme.bsky.social · 13/01/2026

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.

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ThereForME @thereforme.bsky.social · 24/12/2025

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.

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ThereForME @thereforme.bsky.social · 23/12/2025

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.”

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ThereForME @thereforme.bsky.social · 23/12/2025

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.

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ThereForME @thereforme.bsky.social · 22/12/2025

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.

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ThereForME @thereforme.bsky.social · 20/12/2025

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). ✨

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.

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ThereForME @thereforme.bsky.social · 19/12/2025

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.

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ThereForME @thereforme.bsky.social · 18/12/2025

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.

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ThereForME @thereforme.bsky.social · 17/12/2025

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.

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ThereForME @thereforme.bsky.social · 16/12/2025

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.

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ThereForME @thereforme.bsky.social · 15/12/2025

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.

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ThereForME @thereforme.bsky.social · 14/12/2025

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.

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ThereForME @thereforme.bsky.social · 13/12/2025

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 ✨

Photo of a smiling lady wearing glasses in a polaroid-style frame on a starry background, marked with a bright star labelled ‘13’. Text says: ‘Thank you for being #ThereForME, Jan Russell!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Diolch o galon for all you and WAMES do for people living with ME across Wales! We'd be lost without you, and we wouldn't have ME in the NHS Wales Women's Health Plan without the work of your tiny but mighty charity. Thank you all for everything. ” Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 12/12/2025

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

Photo of a hairy man wearing a Santa hat in a polaroid-style frame on a starry background, marked with a bright star labelled ‘11’. Text says: ‘Thank you for being #ThereForME, DecodeME team!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Dear Rowan, you have loved and taken care of me through all the downs and downs (there haven't been many ups) of this illness. More than that, seen past it for who I really am. You mean the absolute world to me and I love you. Thank you, Keren xx ” Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 11/12/2025

December 11th. Thank you for being #ThereForME, @decodemestudy.bsky.social ! 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. ✨

Graphic of a letter on a starry blue background. The letter says “Dear Chris Ponting & the DecodeME team, Your DecodeME findings are a huge scientific and emotional milestone for people with ME. Thank you for driving research and hope — we’re grateful you’re #ThereForME.” Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 10/12/2025

December 10th. Thank you for being #ThereForME, Dr Sally Witcher @inclusivenew.bsky.social! 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. ✨

Photo of a lady with a lovely smile in a polaroid-style frame on a starry background, marked with a bright star labelled ‘10’. Text says: ‘Thank you for being #ThereForME, Dr Sally Witcher!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Dear Sally, Thank you for representing pandemic disabled people at Inclusive New Normal, inc. those with Long Covid and ME. Your invaluable experience and connections have made sure our voices are heard by the Scottish government & ADP review! 🩵” Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 09/12/2025

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

Photo of a smiling man wearing an apron that says “Fun Time Frankie: The man, the myth, the legend” in a polaroid-style frame on a starry background, marked with a bright star labelled ‘9’. Text says: ‘Thank you for being #ThereForME, Frank Docherty!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Francis, Thank you for all you do for me, especially since M E changed our lives. Thank you for your endless patience, for every cancelled plan, every meal, every chore. You show what "in sickness and in health" truly means. I'm so lucky to have you” Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 08/12/2025

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

Photo of a smiling lady wearing a yellow jumper in a polaroid-style frame on a starry background, marked with a bright star labelled ‘8’. Text says: ‘Thank you for being #ThereForME, Sarah Gibson MP!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Sarah, Thank you for always listening when I email you about Myalgic Encephalomyelitis. I know you are trying your very best to help and to bring about positive change for your constituents with ME.” Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 07/12/2025

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

Photo of a lady with dappled rainbow light in a polaroid-style frame on a starry background, marked with a bright star labelled ‘7’. Text says: ‘Thank you for being #ThereForME, Karin Hilton!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Karin, you are my greatest cheerleader, researcher, shoulder, listener, occasional personal chef and all-round best friend. Without you I wouldn’t be where I am today, fought to be heard and gone after the things that make me happy. Thank you xx.” Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 06/12/2025

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

Photo of a smiling lady in a nurse’s uniform wearing reindeer antlers in a polaroid-style frame on a starry background, marked with a bright star labelled ‘6’. Text says: ‘Thank you for being #ThereForME, Pauline White!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Pauline, You totally support us in caring for Alice. You listen to us and take action. You go above and beyond educating other health professionals and advocating for people with ME. Thank you, The Barretts.” Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 05/12/2025

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

Photo of a smiling man with a white goatee and glasses in a polaroid-style frame on a starry background, marked with a bright star labelled ‘5’. Text says: ‘Thank you for being #ThereForME, Tony White!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Tony, I honestly can't express just how grateful I am to have you by my side, and for everything you do and have done for me. Life with M.E. is more than difficult, and I know I can be, too — so thank you for your ongoing patience, care and love. Xx”’. Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 04/12/2025

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

Photo of a smiling lady sitting next to a Christmas tree with her Christmas dinner in a polaroid-style frame on a starry background, marked with a bright star labelled ‘4’. Text says: ‘Thank you for being #ThereForME, Anna!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Anna has been a wonderful online friend to many people with ME. She has also spent so much precious energy on growing her tea party for ME and has raised thousands for ME charities over the past decade. She is an inspiration. We love Ray Butterlumps!”’. Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 03/12/2025

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

Photo of a smiling man with glasses in a polaroid-style frame on a starry background, marked with a bright star labelled ‘3’. Text says: ‘Thank you for being #ThereForME, Alexis!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Alexis, not only are you a fantastic friend and support, but your dedication to advocate for this community is amazing. Please never underestimate what you do for so many people, we are forever grateful. Lots of love, Becky 💙”’. Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 02/12/2025

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

Photo of a smiling woman wearing a top with a glittery Christmas tree on it in a polaroid-style frame on a starry background, marked with a bright star labelled ‘2’. Text says: ‘Thank you for being #ThereForME, Melanie De Luca!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says "Mel, You are such an incredible support to me, and so many others with M.E too. It’s such a relief to know you understand and will help however you can, and I appreciate it so much. It’s made this time a lot less scary and lonely. Thank you, Lizzy x"
Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 01/12/2025

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

Photo of a smiling woman with glasses in a polaroid-style frame on a starry background, marked with a bright star labelled ‘1’. Text says: ‘Thank you for being #ThereForME, Sue!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says "Sooz, you listen to me and send caring messages of support, which means so much. It keeps me going. You're like a breath of fresh air. This year you also fundraised a lot of money for M.E Research. I appreciate you so much. Lots and lots of love, Mum" . Hashtag #ThereForME at the bottom.

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ThereForME @thereforme.bsky.social · 30/11/2025

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.

Advent Reflection for the ME Community
Advent is a season of hope, peace, joy, and love - a time to prepare for the coming of the Saviour, Jesus Christ. Yet for those of us with ME, Advent and Christmas often bring other emotions too: sorrow, isolation, and the sharp reminder of all we cannot do. While others gather to celebrate, many of us remain in darkened rooms, unable to tolerate light, noise, or company. It is then that the loneliness of illness feels most acute and can feel overwhelming.
And yet, Advent is precisely about light shining in darkness, and hope being born when all seems lost.

(cont'd)

As a fifty-year veteran of ME, I have witnessed two parallel stories unfold. One is the steady progress of science, gradually uncovering some of the biological roots of this devastating disease during the last quarter of the 20th century. The other is a darker story - of denial, distortion, and stigma, as powerful voices from 1988 onwards sought to redefine ME as merely psychological, and bury the research and knowledge gained. This falsehood caused profound harm: patients were abandoned, disbelieved, and sometimes destroyed by the very systems meant to protect them, while parents endured false accusations of FII.

(cont'd)

But now, the truth is coming to the fore again, and the knowledge, long buried, is being regained. A new generation of scientists is rediscovering the evidence; silenced voices are being heard. For the first time, there is genuine, evidence-based hope - of biomarkers, of understanding, of treatments to come. Though some still cling to the old dogma, the medical darkness is giving way to dawn.

(cont'd)

This Christmas, as we await the coming of Christ - the Light of the World - we also wait for the healing of truth and compassion. The hope of Advent is not naïve; it is forged in endurance and kept alive by faith.
Let us hold fast to that hope - that soon, light will shine fully into this darkest of medical chapters, and no one with ME or Long Covid will be left unseen, unheard, or disbelieved again.
With love to all in the community,
Jenny

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ThereForME @thereforme.bsky.social · 25/11/2025

#5 DHSC rhetoric is getting stronger on how people with ME are being failed Ashley Dalton shared many of the usual gov lines but we noticed stronger DHSC rhetoric. Of course, what matters is action, not words. Tessa Munt duly promised to hold Dalton's "feet to the fire" 🔥

"ME/CFS has been overlooked for far too long. We are determined to change that. To everyone living with ME/CFS and to your families and carers, I say this: we hear you; we value you; we believe you; and we are committed to making the system work better for you and with you." Ashley Dalton. Parliamentary under-secretary of state for public health and prevention. #ThereForME

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ThereForME @thereforme.bsky.social · 25/11/2025

#4 - The argument for research funding has been bolstered by German funding and DecodeME 👩‍🔬 💰 Several MPs mentioned new German funding + DecodeME. The argument for putting real money into ME research is feeling more compelling than ever.

"Decode ME has shown the brilliance of UK science, but funding remains far too limited. Germany has pledged 500 million Euros to research with the aim of curing ME by the next decade. We need to be just as ambitious." Jo Platt, MP for Leigh & Atherton and chair of the APPG on ME. #ThereForME

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