Emma Gore-Lloyd

#ThereForME Advent Calendar 2025 Who's been #ThereForME this year? We know that support for people with ME isn't anywhere near as good as it should be - and we're working hard to change that. But this Christmas we wanted to take a mo...

Sorry Ellie, not sure what happened there! Try this one - forms.gle/qWb6fZEq5GSg...

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!

ME/CFS: the final delivery plan The final delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), focusing on 3 main areas to improve care and support for those with ME/CFS.

And here it finally is: www.gov.uk/government/p...

We're still waiting for it go online...

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

Our comment 👇

You were both excellent! Thank you 🙏

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 🙏💙

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

Was hoping to see my MP on this list.

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

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...

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...

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

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 👇

YouTube video by Broken Battery BBC 5 Live - Long COVID 5 years on

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?...

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.

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...

📢 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.

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 🙏

Stuck at the bottom of a well Me, very severe ME and the NHS

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...

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.

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 👇

#FundThePlan ally edition. #ThereForMe

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

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

Dear @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social. My partner is missing from his life.
Please, #FundThePlan 💙

#MyalgicEncephalomyelitis
#LongCovid
#lyme
@thereforme.bsky.social

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.

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...

Thank you, Helen!

#FundThePlan #ThereForME

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

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

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...

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...

“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.”

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...

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-...

Love this! Tastes 💯 have shapes!

There's a picture of Ashley Dalton, a rose and a heart, and the poem: roses are red, yuccas are green, won't you please, Ashley, be #ThereForME?

We made a #valentines card for @ashleydaltonmp.bsky.social 💙

#ThereForME
#forgetMEnot

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…

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.