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Karen Hargrave @karenlhargrave.bsky.social · 1d

📣 Help us spread the word!

Yes I know it’s October - but at @thereforme.bsky.social HQ it’s already beginning to look like Christmas 🎄

📆 You have until Oct 26 to help us find our #ThereForME 2025 Advent Calendar stars!

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ThereForME @thereforme.bsky.social · 1d

We know that support for people with ME isn't anywhere near as good as it should be - & we're working hard to change that.

But this Christmas we wanted to take a moment to celebrate those in the UK who are in our corner.

Can you help us find our #ThereForME advent calendar stars?

A large white star with an orange question mark in the centre. It is on a pale blue background with many small stars. Beneath it “ThereForME Advent Calendar 2025”

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Karen Hargrave @karenlhargrave.bsky.social · 19d

Today’s @ThereForME_UK blog shares views from carers & clinicians with experience supporting people with very severe ME.

❓ Should the Health Sec commission an NHS service?

❓ What would a good service look like?

❓ How could it build trust among patients & carers?

More👇

ThereForME @thereforme.bsky.social · 19d

Today's #ThereForME blog shares findings from a mini survey.

We asked carers and clinicians with experience supporting people with v severe ME whether the Health Secretary should commission a service for v severe ME - and if so, what it should look like.

Link in next post 👇

Speech bubble with “What would an NHS service for very severe ME look like?” At the bottom of the image: “Perspectives from carers & clinicians. #ThereForME”

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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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Karen Hargrave @karenlhargrave.bsky.social · Jul 23

A short 🧵 celebrating a year of #ThereForME! It’s been a whirlwind and the biggest thanks to all who have played a part.

By no means the biggest achievement but it will never cease to delight me that our only photo of our HQ trio together features our Christmas jumpers 🎄🎅

ThereForME @thereforme.bsky.social · Jul 23

Today we’re celebrating a year to the day since @karenlhargrave.bsky.social & @emmagl.bsky.social launched #ThereForME!

We had a busy day yesterday responding to the Delivery Plan release. It’s clear how much more our campaign has left to do - but today we’re reflecting on what we’ve done so far

One year ago we launched #ThereForME, calling for an NHS that’s there for people with ME & Long Covid. What have we done so far?

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Reposted by Karen Hargrave

ThereForME @thereforme.bsky.social · Jul 22

“I honestly just did not realise that it was possible, in the UK in 2025, to be as sick as my husband is & for there to be basically no specialist NHS services to provide any kind of support”

Our co-founder @karenlhargrave.bsky.social on Radio 4 WATO 👇

(Recording via @abrokenbattery.bsky.social)

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

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ThereForME @thereforme.bsky.social · Jul 22

Lots going on today with ME coverage! 📺 📻

Some coverage we’re expecting today (pending news schedules):
- Our co-founder @karenlhargrave.bsky.social due to be featured on Radio 4 World at One between 1-2pm
- #ThereForME Ambasador @binitakane.bsky.social due on Channel 4 News between 7-8pm

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

And that will require all of us, @thereforme.bsky.social included, to step up our game making the case for change.

This is not about a DHSC process. It’s about real lives, people like my husband, who deserve a future & to feel that their lives matter. We won’t give up that easy 💪

(10/)

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

So, plenty of disappointment.

Ever the optimist, I’m not ruling out potential to make more progress. But that will require DHSC & ministers to approach the next stage of this work with a level of prioritisation and, ultimately, investment we aren’t currently seeing.

(9/)

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

On education & training - ultimately we are talking about the need to reeducate the NHS workforce. This is huge.

Yet the plan’s main initiative is an optional e-learning. Far more robust approaches have been seen on conditions EG autism, but this takes investment.

(8/)

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

The plan talks about ramping up research funding. Yet the plan’s flagship NIHR initiative on repurposed meds, while a positive step, is limited to £200k grants.

While the plan says researchers can apply for existing funds, this has never resulted in much historically.

(7/)

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

To give one example: the plan discusses “exploring” commissioning an NHS service for very severe ME. Despite Dalton’s commitment to make preventable deaths from ME “never events” there is no concrete commitment to actually do so.

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

The main issue we see is that the plan doesn’t go anywhere near far enough in putting forward solutions.

In many ways this was inevitable with no additional funding on the table (#FundThePlan). These are structural challenges needing transformative solutions & investment.

(5/)

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

It’s not perfect but the plan has a pretty decent diagnosis of the main challenges people with ME face.

It recognises we need:

✅ More research
✅ Better NHS services
✅ Ramped up education & training

(4/)

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

First of all the positives.

In essence, the plan is a government recognition of how #PwME are being failed.

In the foreword Ashley Dalton recognises patient safety concerns & preventable deaths. This is something that can be used to hold the government to account.

(3/)

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

First of all our POV from @thereforme.bsky.social👇

People with ME have been waiting for the Final Delivery Plan for more than three years. This has been a very long time coming.

(2/)

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Karen Hargrave @karenlhargrave.bsky.social · Jul 22

The Final Delivery Plan for ME/CFS has been released today.

The full report was shared with some organisations and media outlets late yesterday. We’re (still) waiting for it to go online.

A short 🧵with some thoughts…

(1/)

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Karen Hargrave @karenlhargrave.bsky.social · Jul 15

A while ago we decided that our bi-weekly @thereforme.bsky.social campaign updates should each have unique theme. Which, I must say, is getting harder the more we do (though we are totally game for the challenge 😜)

This week we did visibility - in honour of @oonaghcousins.bsky.social👇

ThereForME @thereforme.bsky.social · Jul 15

Today we’ve got a visibility themed update, in honour of our @oonaghcousins.bsky.social new job.

Read today’s #ThereForME update to find out how many times we can fit the word “visible” into a blog.

Link in next post 👇

Campaign update 23: getting visible. Where oh where is the delivery plan? NIHR funding. Long Covid visibility at the V&A. New #ThereForME substack post

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Reposted by Karen Hargrave

ThereForME @thereforme.bsky.social · Jun 17

Today’s #ThereForME campaign update focuses our our new joint briefing on the planned reforms to PIP.

A big thank you to everyone who took part in our survey 🙏 Today’s update shares the findings and how you can help.

Link in next post 👇

In large writing on an orange background: campaign update 21. Underneath in smaller writing: taking the PIP, concern about reform to disability benefits, new data from people with ME & Long Covid, from evidence to action, a word for carers. At the bottom: New #ThereForME substack post.

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Reposted by Karen Hargrave

ThereForME @thereforme.bsky.social · Jun 16

1/3 ❌ PIP cuts will be devastating for people with #ME & #LongCovid.

Our new briefing shows these reforms will push people further from work, deepen poverty & worsen health.

We’re calling on MPs to oppose this - help us flood their inboxes.
Briefing & how to act ⬇️

Blue background with white writing: PIP cuts will be devastating for people with Long Covid & ME. Read the briefing & take action. 4 logos: Long Covid Support, Action for ME, MELN, #ThereForME

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Reposted by Karen Hargrave

ThereForME @thereforme.bsky.social · May 20

Our latest #ThereForME blog gives an update from a busy few weeks.

Ft. the @libdems.org.uk and @tessamunt.bsky.social!

Link in next post 👇

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Reposted by Karen Hargrave

ThereForME @thereforme.bsky.social · May 13

For #WorldMEDay, what really matters is not just words - but action on the issues that are important to people with ME. The @libdems.org.uk have been leading the way on that!

Thank you @tessamunt.bsky.social for raising this important issue in DWP questions yesterday 🙏

Tessa Munt MP 🔶 @tessamunt.bsky.social · May 13

I used the opportunity of DWP questions on #WorldMEDay to ask that Liz Kendall talk to DHSC to make funds available for research so that #pwME could do what they want more than anything which is to live a normal life, go to work, and not have to try to survive on benefits. Win-win. #FundThePlan

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Karen Hargrave @karenlhargrave.bsky.social · May 8

Hard to describe how much this means to me - and to James - to see the entire @libdems.org.uk parliamentary party united in solidarity with #PwME

The biggest thanks to @tessamunt.bsky.social & everyone who helped make this happen (not least, those 72 MPs!) 👏👏👏

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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Reposted by Karen Hargrave

ThereForME @thereforme.bsky.social · May 6

We’ve been a little low on capacity lately between life and various bits we’ve got in the pipeline.

For subscribers wondering where our weekly #ThereForME blog has got to - we’ll be back in your inboxes next week!

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Reposted by Karen Hargrave

ThereForME @thereforme.bsky.social · Apr 29

We’ve got a great blog out today from our very own @WeiszGuy1.

Over the past 9 months Jonah has helped to build our @ThereForME_UK work in parliament. He writes for us today about his family’s experiences with ME and Long Covid.

www.thereforme.uk/p/me-in-the-...

ME in the family

A generational Sword of Damocles

www.thereforme.uk

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Karen Hargrave @karenlhargrave.bsky.social · Apr 12

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ThereForME @thereforme.bsky.social · Apr 12

“People with ME, their carers and families are saying: how can you deliver a plan with no money assigned to it?”

Rosie Barrett on @bbcspotlight.bsky.social

(Clip via @abrokenbattery.bsky.social)

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