iiinova — where your digital self keeps evolving

Reposted by Emma Gore-Lloyd

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 · 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 · 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

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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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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Tessa Munt MP 🔶 @tessamunt.bsky.social · 21/01/2026

The post year has shown that shifting the government to provide a response proportionate to the needs of the 1.35m #pwME is a tough call, but I’m looking forward to working strategically with the group to bring the meaningful change that has been denied us all for too long.

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 21/01/2026

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.

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Karen Hargrave @karenlhargrave.bsky.social · 23/12/2025

We had a small social media scheduling oops yesterday 🫣 So, better late than never - let’s show @binitakane.bsky.social some love! 💙 Thanks for being #ThereForME as a doc + patient advocate. We’re very proud to have you as an Ambassador, Binita! 👏👏

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Reposted by Emma Gore-Lloyd

Karen Hargrave @karenlhargrave.bsky.social · 22/12/2025

Thank you Ed Davey and the @libdems.org.uk for being #ThereForME this year! Your support has meant the world to us at @thereforme.bsky.social and for people with ME across the UK ⭐️💛

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Reposted by Emma Gore-Lloyd

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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Reposted by Emma Gore-Lloyd

Karen Hargrave @karenlhargrave.bsky.social · 29/07/2025

Our latest @thereforme.bsky.social blog includes our reflections on the Final Delivery Plan for ME and a rundown of some of the media coverage. We’re taking a short campaign break in August to give our team time to rest and regroup. We’ll be back on it in September!

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 22/07/2025

After 3+ years of waiting the Final Delivery Plan for ME is being released today. Our comment 👇

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Emma Gore-Lloyd @emmagl.bsky.social · 27/05/2025

I'm so grateful for the support of the other carers I know. It means the world to be understood and to be able to be there for each other. I'm a little less lost with them in my life 🙏💙

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 08/05/2025

It’s official: the @libdems.org.uk are #ThereForME ! 🧡 Incredible to see every single one of the Lib Dems’ 72 MPs signing this letter led by @tessamunt.bsky.social ahead of World ME Day. They’ve joined our call to @rthonwesstreeting.bsky.social and @ashleydaltonmp.bsky.social to #FundThePlan

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Emma Gore-Lloyd @emmagl.bsky.social · 08/05/2025

Was hoping to see my MP on this list.

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Jessica Elgot @jessicaelgot.bsky.social · 08/05/2025

EXC - 42 MPs have signed a letter to Keir Starmer saying the disability cuts are “impossible to support” PM is facing biggest rebellion of the parliament over welfare vote MPs call for pause and rethink until fuller impact assessments can be done in autumn and warn disabled people are frightened

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ThereForME @thereforme.bsky.social · 16/04/2025

If you're in England, Wales, or Northern Ireland, living (or caring for someone) with Long Covid or ME/CFS and receiving PIP, UC, or ESA, we want to hear from you. 👉 Take our 5-10 min survey: forms.gle/rrvNm7G1bDRn...

forms.gle

The new proposed welfare reforms: understanding the impact on people with Long Covid and ME/CFS

This survey is for individuals with Long Covid (LC) or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) who are receiving benefits affected by the government's proposed reforms. If the pers...

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 16/04/2025

The UK government is proposing significant changes to welfare benefits. These reforms could profoundly impact individuals with Long Covid and ME/CFS. We've launched a survey to gather your insight 👇

Text in graphic says: Survey: have your say on welfare benefits reform.
Calling people with long COVID and ME/CFS
At the bottom are 4 logos - long COVID support, action for ME, ME local groups network and #ThereForME

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 19/03/2025

Great to hear our @oonagh_cousins and #ThereForME Ambassador @binitakane.bsky.social on @bbc5live.bsky.social this morning! Clip here courtesy of @abrokenbattery.bsky.social👇 youtu.be/9Wh6lIEYZcg?...

youtu.be

BBC 5 Live - Long COVID 5 years on

YouTube video by Broken Battery

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 20/03/2025

Powerful story on @bbclooknorth.bsky.social about Dr Alexis Gilbert. “"I've lived like this for two or three years and the thought of living like this for another two or three years is completely overwhelming, never mind a decade or longer," www.bbc.com/news/article...

bbc.com

Leeds doctor still 'bedbound' three years after Covid infection

Dr Alexis Gilbert was working in public health when he fell ill and now struggles with daily tasks.

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ThereForME @thereforme.bsky.social · 20/03/2025

📢 MEDIA OPPORTUNITY Do we know anyone who has borrowed money, taken on debt or sacrificed basics to finance private care for ME or Long Covid - and who would be able to talk to media about it? We can share more details by DM.

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Reposted by Emma Gore-Lloyd

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

We’ve been so moved seeing the #FundThePlan videos over the past few weeks. Now, we want to get our call to #FundThePlan out far and wide. Here’s a little something we’ve put together for the campaign. We’d love your help making some noise with it 🙏

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 04/03/2025

Today's #ThereForME blog post is from @nickbenton.bsky.social, who has experienced some improvement from Very Severe ME. He shares his various experiences with health care and talks about the need to be #ThereForME for those too sick to advocate for themselves. www.thereforme.uk/p/stuck-at-t...

thereforme.uk

Stuck at the bottom of a well

Me, very severe ME and the NHS

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 26/02/2025

We’d love your help asking allies in your life, and the wider world, to get involved and stand with people with ME as we ask the government to #FundThePlan. We’ve even got a new template script for the occasion 👇

Script: Dear Wes & Ashley,
My name is [...] & I’m [...]. (Say why this matters to you.) In the coming months, the government is due to publish a new delivery plan for ME, aiming to boost research and strengthen care. But so far, no additional funding has been allocated to it. Public finances are tight - but in the world of government spending we are talking about modest sums. Just £20m a year behind the plan would make an enormous difference. People with ME are calling on the government to invest in their future and reverse generations of neglect. I’m standing with them to say please, fund the plan.

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 26/02/2025

We’ve been amazed watching the incredibly powerful #FundThePlan videos being shared by people with ME and carers. It’s clear PwME want change. Now we’re asking allies, whether friends, healthcare workers or public figures, to join us. It’s time for #FundThePlan: Ally edition

Get involved! Friends, relatives, allies please post a video of yourself asking Wes Streeting and Ashley Dalton to #FundThePlan. We have a template you can follow and example videos. Use the hashtag #FundThePlan. Tag Wes, Ashley, #ThereForMe

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 25/02/2025

New #ThereForME blog out today highlighting some of the community campaigning work going on for #ME and #LongCovid - from #FundThePlan to Long Covid Awareness Day. Read more and learn how you can get involved 👇 www.thereforme.uk/p/campaign-u...

Community campaigning together. Campaign update #14. Concerns about lack of funding for the Delivery Plan for ME. How to join #FundThePlan. Long Covid awareness day. New #ThereForME Substack post. A phone displays on its screen: Get involved! #FundThePlan.

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 20/02/2025

Yesterday’s news was disappointing but not unexpected. With over a month until the plan is finalised there’s still time for ministers to change course. And every bit of pressure helps. More from us tomorrow on how you can fight back 💪 #FundThePlan

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 19/02/2025

Support for ME isn’t just for Christmas! Brilliant to see #ThereForME advent calendar supporter & @libdems.org.uk health spokesperson @helenmorganlibdem.bsky.social writing in @thetimes.com today. www.thetimes.com/comment/colu...

thetimes.com

Plan to help ME sufferers has been delayed for too long

Ministers must show that care and research for these neglected patients is a priority

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ThereForME @thereforme.bsky.social · 19/02/2025

The piece also quotes today’s op-ed from @libdems.org.uk health spokesperson @helenmorganlibdem.bsky.social on the need for an ambitious delivery plan 💛 bsky.app/profile/ther...

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 19/02/2025

Our co-founder @karenlhargrave.bsky.social quoted in @thetimes.com today on news this week that no additional funds are planned for the new ME delivery plan. www.thetimes.com/uk/healthcar...

“This delivery plan is a once-in-a-generation opportunity to give people with ME and their carers vital hope for the future. It is difficult to see how the plan can meet its objectives without resources behind it.”

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ThereForME @thereforme.bsky.social · 18/02/2025

Today’s #ThereForME blog is from an anonymous healthcare worker She shares her experiences of developing #ME following a Covid infection and ideas for what an NHS that’s #ThereForME would look like. www.thereforme.uk/p/designing-...

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 11/02/2025

Today we’ve written to @ashleydaltonmp.bsky.social - sharing congratulations on the new role and asking for commitment that the new delivery plan for ME/CFS will remain a ministerial priority. Our #ThereForME campaign would welcome the opportunity to meet to discuss our recommendations.

11 February 2025
Dear Ashley Dalton MP,

We write on behalf of the #ThereForME campaign to congratulate you on your recent appointment as Minister in the Department of Health and Social Care.

We are requesting a meeting to discuss our recommendations for the cross-government delivery plan for ME/CFS. #ThereForME is a patient- and carer-led campaign calling for an NHS that’s there for people with ME and Long Covid, supported by 23 organisations and smaller initiatives. We co-founded the campaign as carers to partners who developed very severe ME following Covid infections. The campaign is directly informed by our personal experiences caring for loved ones with this devastating condition, as well as the challenges we have faced accessing safe and meaningful NHS care.

An estimated 1.3 million people in the UK are affected by ME (Myalgic encephalomyelitis, sometimes referred to as ME/CFS), a complex, chronic condition affecting multiple body systems. People with ME have one of the lowest qualities of life of any condition but have faced decades of insufficient care and research funding. ME disproportionately impacts women, with patients and their carers routinely dismissed or disbelieved within NHS care.

Since 2020 these gaps have also impacted people with Long Covid, an overlapping infection-associated chronic condition affecting at least two million people in the UK. Approximately half with Long Covid meet the criteria for ME.

The new Labour Government came into office with a powerful promise: to transform a broken healthcare system and build an NHS fit for the future. The Department of Health and Social Care has committed to publishing a cross-government delivery plan for ME/CFS by the end of March 2025, aiming to improve attitudes, bolster research and better lives.

We urge you to reassure the community of patients and carers that the plan will remain a ministerial priority, and that you will personally ensure the publication of an ambitious and appropriatel…

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 11/02/2025

Our latest #ThereForME campaign update is out today! Read to find out how we’ve been keeping busy, some updates from friends of the campaign and details for how you can help us keep up the momentum 👇 www.thereforme.uk/p/campaign-u...

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Emma Gore-Lloyd @emmagl.bsky.social · 07/02/2025

@newsagents.bsky.social it's really hard hearing you talking about covid being an episode in the past. The lockdowns are over but covid persists and is affecting many many people. Some of us have to live effectively like we're in lockdown to avoid infection cos it's simply too risky to health. 🙃

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Brian Bilston @brianbilston.bsky.social · 04/02/2025

Early morning love poem.

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ThereForME @thereforme.bsky.social · 28/01/2025

In today’s #ThereForME substack we share some of the feedback we received from the community about your priorities for the new Delivery Plan for ME/CFS. 6 things you’d like to see in the delivery plan 👇 www.thereforme.uk/p/six-things...

thereforme.uk

Six things you’d like to see in the Delivery Plan for ME

Sharing feedback from our readers about their priorities for the Delivery Plan

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Emma Gore-Lloyd @emmagl.bsky.social · 14/01/2025

I wish when you get a notification from bluesky and click on it that it would take you to that message or post instead of just open the app. @support.bsky.team

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Reposted by Emma Gore-Lloyd

Binita Kane @binitakane.bsky.social · 14/01/2025

@karenlhargrave.bsky.social and I have written a blog on our hopes for the government’s Final Delivery Plan for ME and other Infection Associated Chronic Conditions like Long COVID ⬇️

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ThereForME @thereforme.bsky.social · 14/01/2025

📢 Today @karenlhargrave.bsky.social and @binitakane.bsky.social will be representing #ThereForME on the Task & Finish group for the new delivery plan for ME. Today's #ThereForME blog outlines six things they'll be looking out for as the delivery plan is finalised. www.thereforme.uk/p/a-delivery...

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ThereForME @thereforme.bsky.social · 31/12/2024

Our #ThereForME campaign updates are back! As 2024 comes to a close, @karenlhargrave.bsky.social reflects on the work we’ve done this year and what we’re looking forward to in 2025. www.thereforme.uk/p/campaign-u...

thereforme.uk

Campaign update #12

What we’re looking forward to in 2025

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 21/12/2024

Yes, I’m definitely #ThereForME. Too many #pwME live with darkness. We’re all poorer for it. It’s time for @DHSCgovuk and @NHSuk to finally give #ME & #LongCovid the response they deserve.

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ThereForME @thereforme.bsky.social · 22/12/2024

Dec 22: It’s Rachel Parris, English comedian, musician, actress and presenter! Her message: “I wish peace, relief, support and to be heard. I hope Santa brings you real help, systemic change and JOY where possible.” #PatientSafety #pwME #pwLC #ThereForME

A pretend polaroid shows a smiling Rachel Parris posing for a photo holding a #ThereForME Christmas card.

The image on the card shows the dark blue Christmas tree, decorated with sparkling fairy lights, baubles and a star on the top, in a snowy landscape against a starry backdrop. The design is in the #ThereForME colours.

This second image displays Rachel’s handwritten message. It reads “I wish peace, relief, support and to be heard. I hope Santa brings you real help, systemic change and JOY where possible.”

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Emma Gore-Lloyd @emmagl.bsky.social · 22/12/2024

Come on you lot! This one's suuuuoer easy! 💪

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ThereForME @thereforme.bsky.social · 20/12/2024

Dr Ranj has spoken about his experiences with #LongCovid. "We call it brain fog colloquially but that probably doesn't do it justice [...] essentially you're losing the executive functions of your brain." www.express.co.uk/life-style/h...

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Reposted by Emma Gore-Lloyd

ThereForME @thereforme.bsky.social · 20/12/2024

Dec 20: It's TV doctor Dr Ranj Singh! Dr Ranj is also an author and columnist, and has appeared on #Strictly. His message: “You are so much more than your condition. And you deserve to be heard. Merry Xmas, Dr Ranj x” #PatientSafety #pwME #pwLC #ThereForME

A pretend polaroid shows Dr Ranj posing for a photo holding a #ThereForME Christmas card.

The image on the card shows the dark blue Christmas tree, decorated with sparkling fairy lights, baubles and a star on the top, in a snowy landscape against a starry backdrop. The design is in the #ThereForME colours.

This second image displays Dr Ranj’s handwritten message. It reads “You are so much more than your condition. And you deserve to be heard. Merry Xmas, Dr Ranj x”

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Binita Kane @binitakane.bsky.social · 19/12/2024

@karenlhargrave.bsky.social has summarised the findings in this 🧵 bsky.app/profile/kare...

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ThereForME @thereforme.bsky.social · 19/12/2024

Our campaign's first bit of media coverage this year came from @eleanorhayward.bsky.social, who followed up with this story about @oonaghcousins.bsky.social (ft. a very glamorous photoshoot!) Read more about #ThereForME HQ member Oonagh's story 👇 www.thetimes.com/uk/healthcar... #PatientSafety

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