Author | Lightnews

Emma Gore-Lloyd @emmagl.bsky.social · 19d

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

#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...

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Karen Hargrave @karenlhargrave.bsky.social · Jul 29

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!

ThereForME @thereforme.bsky.social · Jul 29

Today’s #ThereForME blog is our last update before a short pause (we’ll be back in September 😎).

We unpack the Delivery Plan, the media coverage and why it matters.

Link in next post 👇

Update 24. Responding to the Final Delivery Plan. A closer look at the plan, Final Delivery Plan in the media, why the Delivery Plan matters. New #ThereForME Substack post

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Emma Gore-Lloyd @emmagl.bsky.social · Jul 22

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

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.

www.gov.uk

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Emma Gore-Lloyd @emmagl.bsky.social · Jul 22

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

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ThereForME @thereforme.bsky.social · Jul 22

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 · Jul 22

You were both excellent! Thank you 🙏

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Emma Gore-Lloyd @emmagl.bsky.social · May 27

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 🙏💙

ThereForME @thereforme.bsky.social · May 27

Today’s #ThereForME blog is from our very own @emmagl.bsky.social 💙

Emma shares her memories of becoming a carer, with reflections from an A-Z she wrote in 2023.

Link in next post 👇

“When will James get better? When will he be able to go for a walk again? Sit in the garden again? We can’t really think@about these things.” Emma Gore-Lloyd. New #ThereForME substack post. Behind the quote an image of a cream tea.

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ThereForME @thereforme.bsky.social · May 8

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

Tessa Munt MP 🔶 @tessamunt.bsky.social · May 8

So delighted that all 72 LibDem MPs signed this letter to @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay

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Emma Gore-Lloyd @emmagl.bsky.social · May 8

Was hoping to see my MP on this list.

Jessica Elgot @jessicaelgot.bsky.social · May 8

Here’s the full letter to Keir Starmer from MPs - they are both new intake and veterans and from the left and right of the party

“Without a change of direction, the Green Paper will be impossible to support”

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Jessica Elgot @jessicaelgot.bsky.social · May 8

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 · Apr 16

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...

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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ThereForME @thereforme.bsky.social · Apr 16

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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ThereForME @thereforme.bsky.social · Mar 19

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?...

BBC 5 Live - Long COVID 5 years on

YouTube video by Broken Battery

youtu.be

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ThereForME @thereforme.bsky.social · Mar 20

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...

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.

www.bbc.com

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ThereForME @thereforme.bsky.social · Mar 20

📢 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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ThereForME @thereforme.bsky.social · Mar 12

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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ThereForME @thereforme.bsky.social · Mar 4

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...

Stuck at the bottom of a well

Me, very severe ME and the NHS

www.thereforme.uk

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ThereForME @thereforme.bsky.social · Feb 26

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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ThereForME @thereforme.bsky.social · Feb 26

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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Emma Gore-Lloyd @emmagl.bsky.social · Feb 26

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

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

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ThereForME @thereforme.bsky.social · Feb 25

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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Emma Gore-Lloyd @emmagl.bsky.social · Feb 20

Thank you, Helen!

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ThereForME @thereforme.bsky.social · Feb 20

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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ThereForME @thereforme.bsky.social · Feb 19

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...

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

www.thetimes.com

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ThereForME @thereforme.bsky.social · Feb 19

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...

ThereForME @thereforme.bsky.social · Feb 19

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...

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

www.thetimes.com

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