Karen Hargrave
@karenlhargrave.bsky.social
Co-founder #ThereForME | Calling for an NHS that’s there for ME & Long Covid | www.thereforme.uk
Independent researcher & policy analyst | Migration & displacement | Projects with @odi-global.bsky.social | www.linkedin.com/in/karen-hargrave
Independent researcher & policy analyst | Migration & displacement | Projects with @odi-global.bsky.social | www.linkedin.com/in/karen-hargrave
Pinned
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?
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?
📣 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!
🌟
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!
🌟
The DecodeME team have done amazing things this year! 👩🔬
Really pleased to have this opportunity to celebrate their work ⭐️
Really pleased to have this opportunity to celebrate their work ⭐️
December 11th. Thank you for being #ThereForME, @decodemestudy.bsky.social !
Earlier this year the team, based at the University of Edinburgh, released groundbreaking research findings, revealing distinct genetic signals in people with ME. Nominated by Michael. ✨
Earlier this year the team, based at the University of Edinburgh, released groundbreaking research findings, revealing distinct genetic signals in people with ME. Nominated by Michael. ✨
December 11, 2025 at 9:33 AM
The DecodeME team have done amazing things this year! 👩🔬
Really pleased to have this opportunity to celebrate their work ⭐️
Really pleased to have this opportunity to celebrate their work ⭐️
The DecodeME team have done amazing things this year! 👩🔬
Really pleased to have this opportunity to celebrate their work ⭐️
Really pleased to have this opportunity to celebrate their work ⭐️
December 11th. Thank you for being #ThereForME, @decodemestudy.bsky.social !
Earlier this year the team, based at the University of Edinburgh, released groundbreaking research findings, revealing distinct genetic signals in people with ME. Nominated by Michael. ✨
Earlier this year the team, based at the University of Edinburgh, released groundbreaking research findings, revealing distinct genetic signals in people with ME. Nominated by Michael. ✨
December 11, 2025 at 9:32 AM
The DecodeME team have done amazing things this year! 👩🔬
Really pleased to have this opportunity to celebrate their work ⭐️
Really pleased to have this opportunity to celebrate their work ⭐️
Another one that made me well up 🥺
Thanks for being #ThereForME, Frank (and, as per photo, doing it in style)!
Thanks for being #ThereForME, Frank (and, as per photo, doing it in style)!
December 9th. Thank you for being #ThereForME, Frank Docherty!
Frank was nominated by his wife Susan for his invaluable support since she developed ME. ✨
Frank was nominated by his wife Susan for his invaluable support since she developed ME. ✨
December 9, 2025 at 9:20 AM
Another one that made me well up 🥺
Thanks for being #ThereForME, Frank (and, as per photo, doing it in style)!
Thanks for being #ThereForME, Frank (and, as per photo, doing it in style)!
Great to see this nomination from a constituent!
Thanks for being #ThereForME, @sarahgibsonmp.bsky.social 💫
Thanks for being #ThereForME, @sarahgibsonmp.bsky.social 💫
December 8th. Thank you for being #ThereForME, @sarahgibsonmp.bsky.social!
Sarah is the LibDem MP for Chippenham and was nominated by her constituent, Tess. ✨
Sarah is the LibDem MP for Chippenham and was nominated by her constituent, Tess. ✨
December 8, 2025 at 9:22 AM
Great to see this nomination from a constituent!
Thanks for being #ThereForME, @sarahgibsonmp.bsky.social 💫
Thanks for being #ThereForME, @sarahgibsonmp.bsky.social 💫
Really pleased that our advent calendar gave us the opportunity to celebrate some of the amazing healthcare workers out there going above and beyond - including in the NHS.
Thanks for being #ThereForME Pauline!
Thanks for being #ThereForME Pauline!
December 6, 2025 at 9:18 AM
Really pleased that our advent calendar gave us the opportunity to celebrate some of the amazing healthcare workers out there going above and beyond - including in the NHS.
Thanks for being #ThereForME Pauline!
Thanks for being #ThereForME Pauline!
Today’s advent calendar star is Tony, nominated by his partner Tracey for all of his support ⭐️
🥺
🥺
December 5th. Thank you for being #ThereForME, Tony White!
Nominated by Tracey @traceydooley.bsky.social. ✨
Nominated by Tracey @traceydooley.bsky.social. ✨
December 5, 2025 at 2:15 PM
Today’s advent calendar star is Tony, nominated by his partner Tracey for all of his support ⭐️
🥺
🥺
Today’s #ThereForME advent calendar star is Anna Redshaw, founder of the Tea Party for ME 💫
Thanks for everything you do, Anna 🙏
Thanks for everything you do, Anna 🙏
December 4, 2025 at 9:04 AM
Today’s #ThereForME advent calendar star is Anna Redshaw, founder of the Tea Party for ME 💫
Thanks for everything you do, Anna 🙏
Thanks for everything you do, Anna 🙏
Big thanks to Alexis for being such a fantastic advocate for the community! 🙏
December 3, 2025 at 10:19 AM
Big thanks to Alexis for being such a fantastic advocate for the community! 🙏
Behind door 2 is Melanie De Luca, a physio for @actionforme.bsky.social - nominated by @hopefullizzy.bsky.social! ⭐️
December 2nd. Thank you for being #ThereForME, Melanie Di Luca @actionforme.bsky.social!
Nominated by @hopefullizzy.bsky.social ✨
Nominated by @hopefullizzy.bsky.social ✨
December 2, 2025 at 9:33 AM
Behind door 2 is Melanie De Luca, a physio for @actionforme.bsky.social - nominated by @hopefullizzy.bsky.social! ⭐️
December 1, 2025 at 9:14 AM
A short thread with our takeaways from last week's Westminster Hall debate on government support for ME 👇
(AKA Karen gets her nerd on 🤓 + Emma brings her graphics game 🎨)
(AKA Karen gets her nerd on 🤓 + Emma brings her graphics game 🎨)
Today's #ThereForME blog shares our takeaways from last week's Westminster Hall debate, tabled by @tessamunt.bsky.social
👇
👇
November 25, 2025 at 9:52 AM
A short thread with our takeaways from last week's Westminster Hall debate on government support for ME 👇
(AKA Karen gets her nerd on 🤓 + Emma brings her graphics game 🎨)
(AKA Karen gets her nerd on 🤓 + Emma brings her graphics game 🎨)
Help us pack Westminster Hall!
Everything you need to write to your MP and ask them to attend is here 👇
Everything you need to write to your MP and ask them to attend is here 👇
🚨 NEXT WEDNESDAY 19 NOVEMBER
We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME.
If you have the energy - an email to your MP asking them to attend can go a long way 🙏
Template in next post👇
We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME.
If you have the energy - an email to your MP asking them to attend can go a long way 🙏
Template in next post👇
November 13, 2025 at 10:21 AM
Help us pack Westminster Hall!
Everything you need to write to your MP and ask them to attend is here 👇
Everything you need to write to your MP and ask them to attend is here 👇
Reposted by Karen Hargrave
It’s your last chance to get your nominations in for the #ThereForME 2025 advent calendar!
⏱️ Today is the last day before nominations close
You can add your nomination here: docs.google.com/forms/d/e/1F...
⏱️ Today is the last day before nominations close
You can add your nomination here: docs.google.com/forms/d/e/1F...
October 26, 2025 at 8:58 AM
It’s your last chance to get your nominations in for the #ThereForME 2025 advent calendar!
⏱️ Today is the last day before nominations close
You can add your nomination here: docs.google.com/forms/d/e/1F...
⏱️ Today is the last day before nominations close
You can add your nomination here: docs.google.com/forms/d/e/1F...
📣 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!
🌟
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!
🌟
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?
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?
October 11, 2025 at 2:41 PM
📣 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!
🌟
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!
🌟
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👇
❓ Should the Health Sec commission an NHS service?
❓ What would a good service look like?
❓ How could it build trust among patients & carers?
More👇
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 👇
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 👇
September 23, 2025 at 8:30 AM
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👇
❓ Should the Health Sec commission an NHS service?
❓ What would a good service look like?
❓ How could it build trust among patients & carers?
More👇
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!
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!
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 👇
We unpack the Delivery Plan, the media coverage and why it matters.
Link in next post 👇
July 29, 2025 at 8:29 AM
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!
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!
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 🎄🎅
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 🎄🎅
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
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
July 23, 2025 at 8:44 AM
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 🎄🎅
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 🎄🎅
Reposted by Karen Hargrave
“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)
Our co-founder @karenlhargrave.bsky.social on Radio 4 WATO 👇
(Recording via @abrokenbattery.bsky.social)
July 22, 2025 at 4:32 PM
“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)
Our co-founder @karenlhargrave.bsky.social on Radio 4 WATO 👇
(Recording via @abrokenbattery.bsky.social)
👇
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
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
July 22, 2025 at 11:44 AM
👇
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/)
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/)
July 22, 2025 at 11:37 AM
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/)
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/)
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👇
This week we did visibility - in honour of @oonaghcousins.bsky.social👇
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 👇
Read today’s #ThereForME update to find out how many times we can fit the word “visible” into a blog.
Link in next post 👇
July 15, 2025 at 8:45 AM
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👇
This week we did visibility - in honour of @oonaghcousins.bsky.social👇
Reposted by Karen Hargrave
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 👇
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 👇
June 17, 2025 at 8:05 AM
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 👇
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 👇
Reposted by Karen Hargrave
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 ⬇️
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 ⬇️
June 16, 2025 at 2:35 PM
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 ⬇️
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 ⬇️
Reposted by Karen Hargrave
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 👇
Ft. the @libdems.org.uk and @tessamunt.bsky.social!
Link in next post 👇
May 20, 2025 at 8:18 AM
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 👇
Ft. the @libdems.org.uk and @tessamunt.bsky.social!
Link in next post 👇
Reposted by Karen Hargrave
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 🙏
Thank you @tessamunt.bsky.social for raising this important issue in DWP questions yesterday 🙏
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
May 13, 2025 at 8:23 AM
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 🙏
Thank you @tessamunt.bsky.social for raising this important issue in DWP questions yesterday 🙏