iiinova — where your digital self keeps evolving

ICYMI - more here👇 bsky.app/profile/ther...

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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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The sense of shock George conveys at how people with ME have been failed is exactly why we founded ThereForME. And it’s why we’re so determined to bring the reality of ME directly to the people with the power to act. Who’s with us?

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Jonah Weisz @weiszguy.bsky.social · 23/09/2026

George Monbiot was nominated for last year’s ThereForME Advent Calendar for using journalism to shine a light on failings faced by pwME. Today, he writes that too often people with ME are abandoned, while discredited treatments continue to be prescribed. He’s right.

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After two years of amazing work, we’re only just getting started!! Please reshare and donate if you can (link in thread)

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We will never encourage anyone to give beyond their means, and there are ways to support our work other than donating. You can follow our blog, where we'll share updates on how you can help 👇 4/4 www.thereforme.uk/p/thereforme...

ThereForME is now a registered charity

What it means for our work, and how you can get involved

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We'd love to ask for your support. For those who are willing & able, it's now possible to donate to ThereForME via the link here 👇 3/4 cafdonate.cafonline.org/31147

cafdonate.cafonline.org

ThereForME - Donate now

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We have big ambitions to drive forward change for people with ME & we’ve outgrown what a volunteer effort can sustain. Charitable status enables us to work more effectively towards a world where healthcare, public services, & society are truly there for people affected by ME. 2/4

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Long Covid UK @longcoviduk.bsky.social · 17/09/2026

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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Last weekend, alongside representatives from @thereforme.bsky.social, @actionforme.bsky.social and the ME Association, our trustee Jo Dainow had the opportunity to visit the Royal Opera House and experience The Mirrorbox on behalf of Long Covid UK.

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ThereForME @thereforme.bsky.social · 01/09/2026

In today's update, we share a round-up of what was published to mark Severe ME Day, some of the creative ways people are keeping ME and Long Covid visible year round, and, as ever, a few rays of light. www.thereforme.uk/p/thereforme...

#ThereForME Update 35: awareness, art and action

Hello to our subscribers old and new.

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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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Lucibee @lucibee.bsky.social · 04/08/2026

"What does the future hold for people with ME — and crucially, where must ME advocacy go next? The political landscape has changed, and if we want different outcomes, our advocacy has to evolve with it." - Karen Hargrave @thereforme.bsky.social www.thereforme.uk/p/the-missio...

The mission hasn’t changed — but our advocacy must

Looking ahead to year three of #ThereForME

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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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Karen Hargrave @karenlhargrave.bsky.social · 27/07/2026

📣 We’re looking for someone with ME/a carer to a PwME who would be interested to write a short piece (500 words) for our @thereforme.bsky.social blog about their experiences of/challenges with social care. Ideally looking for someone in Wales or NI - but can be flexible!

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Adam @abrokenbattery.bsky.social · 27/07/2026

“He has difficulty with chewing and swallowing… it’s a struggle to make sure that we’re getting the right nutrition, the right hydration into him… basically to be keeping him alive.” @karenlhargrave.bsky.social on caring for her husband James, who developed very severe ME following COVID. #MECFS

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Lucibee @lucibee.bsky.social · 21/07/2026

Good blog post from Emma Gore-Lloyd of @thereforme.bsky.social Disease prevalence is important, but it's also very difficult to nail down. Designing effective health services requires accurate data. #MECFS #LongCovid #MEDeliveryPlan www.thereforme.uk/p/how-many-p...

How many people in the UK are affected by ME?

We have a data problem

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Elke Hausmann @drelke.bsky.social · 21/07/2026

‘We have a data problem’ - how many are there of us? #LongCovid #ME FYI @yvettecooper-mp.bsky.social

So why isn't the 404,000 figure used universally? It's not an actual headcount, but an estimate, which the authors describe as "lower bound" , because even in the best-diagnosing
area there are people still waiting for a diagnosis. It is also based on hospital records, and therefore doesn't include anyone whose code is on GP records only. In addition, Samms and Ponting's study points out that, of the 0.16% who were recorded with ME, most had symptoms before the pandemic, and draws on a DecodeME study to show that those who became ill after Covid are rarely coded as having ME.

Charities and campaigners - including Action for ME, the ME Association, Forward ME, and #ThereForME (and Tessa Munt MP) - have instead chosen to use a higher 1.35 million figure. This aims to capture the significant number of people who developed symptoms meeting the diagnostic criteria for ME following Covid-19 infection. It is calculated from the above 404k plus the 50% of the 1.9m people in the UK with Long Covid who reported ME-like symptoms (based on 2023 ONS estimates, the most recent Long Covid estimate that exists for the UK as a whole).

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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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Tessa Munt MP 🔶 @tessamunt.bsky.social · 26/06/2026

The NHS Modernisation Bill going through Parliament will set the stall for the NHS for coming years. By tabling amendments I’m looking to address specific issues for #pwME and similar conditions. First target… the Single Patient Record (SPR)… 🙏🏽 @actionforME.bsky.social for sharing its thinking.

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

You can read Jemma's post in full here 👇 www.thereforme.uk/p/why-my-lon...

Why my Long Covid videos resonated

The power of feeling seen

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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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Tessa Munt MP 🔶 @tessamunt.bsky.social · 09/06/2026

Thanks for very helpful roundup of #MEAwarenessMonth activities, announcements, and media appearances - great to see so many initiatives from #ME organisations. I’m very aware of continuing concerns re health & care provisions for severe and v severe ME, & need for substantive investment in research

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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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Tom Kindlon @tomkindlon.bsky.social · 01/06/2026

Description from @scienceforme.bsky.social weekly update: An interview with Carolyn Leary, the newly appointed chair of Forward ME by Karen Hargrave, #ThereForME. Carolyn Leary is carer for her daughter with ME/CFS. She describes making Forward ME more proactive and inclusive. #MEcfs #PwME

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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 · 19/05/2026

Thanks for flagging! We signed as part of the first wave of signatures 🙂

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 12/05/2026

I’m so aware that #WorldMEDay is painful for many, bringing home how tough it is to have #ME, and the seeming lack of progress. Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.

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Katie Holten @katieholten.bsky.social · 12/05/2026

Today is World #ME Day. My thoughts and solidarity are with everyone dealing with Myalgic Encephalomyelitis, aka ME or MECFS. Like millions of others with long COVID, I suffer from it. Update from @thereforme.bsky.social @emmagl.bsky.social @karenlhargrave.bsky.social 🤍 #MEcfs #MillionsMissing