ThereForME

@thereforme.bsky.social

1608 Followers 66 Following

Working to improve support, understanding & quality of life for people affected by ME & related conditions through evidence, awareness & advocacy. www.thereforme.uk

"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
#ThereForME Update 33. All Change in Westminster. What's been happening in Westminster; Research round-up; Recommended listening. New #ThereForME Substack 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.
#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.
"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.
World ME Day 2026. #ThereForME
"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.
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
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.
"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.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
The DecodME logo (with 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’.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
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’.
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)
"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
"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
Tessa Munt speaking in the Westminster Hall debate. Behind her, Adam Dance
"I remain deeply concerned that the [delivery] plan falls short of delivering the meaningful change that is urgently needed by people living with those conditions." Helen Maguire. LibDem spokesperson for primary care + MP for Epsom and Ewell. #ThereForME
MPs sitting in Westminster hall while Jo Platt stands to speak
Campaign Update 28. Five takeaways from Westminster Hall. MPs turned out in force. Clear cross party consensus on need for action. Severe and very severe ME got airtime. Argument for research funding bolstered. Stronger DHSC rhetoric. New #ThereForME Substack post.
"In December 2024 [...] the Welsh Cabinet Secretary for Health and Social Care, Jeremy Miles, proclaimed the population was deveoping 'natural immunity' to Covid-19. This is misleading and dangerous." Yanto Evans. New #ThereForME Substack post.
“For too long, ME has been underfunded, under-researched, and poorly understood. Patients deserve better.” Wendy Chamberlain MP. New #ThereForME Substack post.
Campaign update 27. What’s next? #ThereForME advent calendar; Action for ME’s 2025 Big Survey; UK & international research; steps forward? New #ThereForME Substack post
"Alice agreed to be hospitalised reluctantly. She knew she needed help but also knew how damaging a hospital environment would be for her symptoms". Rosie Barrett. New #ThereForME Substack post
“Friend” in orange writing overlaid on a while star, which is on a pale blue pack ground with lots of small white stars. Underneath: “Do you have a friend you’d like to thank for being #ThereForME this year? Let us know! #ThereForME Advent Calendar 2025”
A large white star with an orange question mark in the centre. It is on a pale blue background with many small stars. Beneath it “ThereForME Advent Calendar 2025”
Campaign update 26. This week: What's happening in Westminster? Long Covid advocacy overseas. New #ThereForME Substack post.