iiinova — where your digital self keeps evolving

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 · 24/09/2026

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

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

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.uk

#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...

thereforme.uk

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...

thereforme.uk

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

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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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

thereforme.uk

World ME Day 2026

Standing with the ME community today and every day.

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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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Tom Kindlon @tomkindlon.bsky.social · 31/03/2026

The UK Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS ugc.production.linktr.ee/8dd80874-c0a... Screenshot from Science for ME update #MEcfs #PwME #SevereME @thereforme.bsky.social

UK DHSC delays commissioning of services for the most severely affected
The Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS. This is said to be due to wider organisational changes within the NHS. #ThereForME have produced a PDF briefing on the topic.
PDF | Thread

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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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Tom Kindlon @tomkindlon.bsky.social · 09/03/2026

#ThereForMe @thereforme.bsky.social Guest post from Tessa Munt MP @tessamunt.bsky.social www.thereforme.uk/p/the-case-f... Screenshot from Science for ME weekly update #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

UK #ThereForMe Guest post from Tessa Munt MP
The Liberal Democrat MP for Wells and Mendip Hills in Somerset and current chair of the APPG on ME covers the case for change for people with ME/CFS, the need for government action, and how people can get involved.

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Nicky Proctor @nickyproctor.bsky.social · 04/03/2026

It is heartening to know that we have an ally in this role who understands the decades of neglect faced by the #ME community. I sincerely hope you can meet with @tessamunt.bsky.social very soon and that we will see a step change in government actions on #ME and Long Covid. #ThereForME

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

We look forward to working with @sharonhodgsonmp.bsky.social in her new role! As a long-standing supporter of people with ME, we’re delighted to see Sharon taking on this important position 🙌

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Didier @medidier.bsky.social · 04/03/2026

From @tessamunt.bsky.social, making the case for an almost extinct type of politician that would hear, believe and take action when faced with one of the biggest institutional injustices in 50y. Hard to believe for #pwME, but she is living proof they exist 👏 www.thereforme.uk/p/the-case-f...

thereforme.uk

The case for change for people with ME — and how to get involved

A guest post from Tessa Munt MP

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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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Binita Kane @binitakane.bsky.social · 03/03/2026

Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵 youtu.be/pk00btt7CVs?...

youtu.be

Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast

YouTube video by HLTH Compliance

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Tom Kindlon @tomkindlon.bsky.social · 24/02/2026

(UK) “Six months since the publication of the Final Delivery Plan for ME” blog post by by #ThereForME @thereforme.bsky.social Links: www.thereforme.uk/p/campaign-u... www.gov.uk/government/p... Screenshot from latest Science for ME weekly update #MEcfs #CFS #PwME #MyalgicEncephalomyelitis

UK #ThereForME “Six months since the publication of the Final Delivery Plan for ME”
The UK government policy paper was published on 22 July 2025. In a blog post #ThereForME summarise developments since then:
“What progress has been made? Are there signs the plan is making a difference? Today we’re taking a whistlestop tour of the latest developments in three priority areas.”
Blog | Plan | Thread

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Nick Benton @nickbenton.bsky.social · 19/02/2026

As one of Tom's constituents, I'm so pleased about this! 😊 He and his staff have always been responsive when I've contacted them about ME. He also quoted my @thereforme.bsky.social piece about having very severe ME in a parliamentary debate in November. So grateful to him for taking us seriously!

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Adam @abrokenbattery.bsky.social · 19/02/2026

ME/CFS Delivery Plan 6 months on Empty words and no concrete action Severe ME patients still being failed, Savannah’s case shows the human cost of inaction. Training uptake is feeble. Research is moving mainly through charities, not government. www.thereforme.uk/p/campaign-u...

thereforme.uk

Campaign update #30: Six months since the publication of the Final Delivery Plan for ME

January 22nd marked six months since the publication of the government’s new Final Delivery Plan for ME.

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Tom Kindlon @tomkindlon.bsky.social · 18/02/2026

(UK) @thereforme.bsky.social co-founder @karenlhargrave.bsky.social writes about applying for Continuing Healthcare funding www.thereforme.uk/p/why-is-con... Screenshot from latest Science for ME weekly update #SevereME #SevereMECFS #VerySevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis

UK #ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare funding
“For over a year now I’ve been struggling to secure NHS Continuing Healthcare (CHC) funding for my husband James. It’s been a gruelling process, emblematic of the many challenges people with ME face accessing support and ultimately getting the condition taken seriously by the NHS. Today I’m sharing our story, and why I think this is an issue that deserves decision-makers’ attention.”

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Lucibee @lucibee.bsky.social · 17/02/2026

Good write-up from #ThereForME on progress with the #MEDeliveryPlan I agree. People with ME deserve so much better.

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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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Tessa Munt MP 🔶 @tessamunt.bsky.social · 16/02/2026

Thanks to The Times for highlighting Savannah’s story and the critical issue that there is no specialist NHS service for very severe ME. Grateful to Ashley Dalton for our recent brief call but still waiting for progress report re ME Plan commitment to explore such a service, including treatments.

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Lucibee @lucibee.bsky.social · 10/02/2026

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. 😖

thereforme.uk

Why is Continuing Healthcare funding so hard to access for people with very severe ME?

Reflections from a year-long battle with the NHS

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Elke Hausmann @drelke.bsky.social · 10/02/2026

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?

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