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!
🌟
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 🙏
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!) 👏👏👏
The biggest thanks to @tessamunt.bsky.social & everyone who helped make this happen (not least, those 72 MPs!) 👏👏👏
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
May 8, 2025 at 4:39 PM
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!) 👏👏👏
The biggest thanks to @tessamunt.bsky.social & everyone who helped make this happen (not least, those 72 MPs!) 👏👏👏
Reposted by Karen Hargrave
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!
For subscribers wondering where our weekly #ThereForME blog has got to - we’ll be back in your inboxes next week!
May 6, 2025 at 7:56 AM
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!
For subscribers wondering where our weekly #ThereForME blog has got to - we’ll be back in your inboxes next week!
Reposted by Karen Hargrave
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-...
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
April 29, 2025 at 8:37 AM
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-...
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-...
👇
“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)
Rosie Barrett on @bbcspotlight.bsky.social
(Clip via @abrokenbattery.bsky.social)
April 12, 2025 at 6:15 AM
👇
Reposted by Karen Hargrave
The biggest well done to Rosie for being the best possible advocate for her sister Alice and our #FundThePlan campaign
Great to see coverage today on @bbcspotlight.bsky.social - with big thanks as ever to @abrokenbattery.bsky.social for recording.
www.youtube.com/watch?v=8DRj...
Great to see coverage today on @bbcspotlight.bsky.social - with big thanks as ever to @abrokenbattery.bsky.social for recording.
www.youtube.com/watch?v=8DRj...
BBC Spotlight - ME/CFS Delivery Plan
YouTube video by Broken Battery
www.youtube.com
April 11, 2025 at 6:24 PM
The biggest well done to Rosie for being the best possible advocate for her sister Alice and our #FundThePlan campaign
Great to see coverage today on @bbcspotlight.bsky.social - with big thanks as ever to @abrokenbattery.bsky.social for recording.
www.youtube.com/watch?v=8DRj...
Great to see coverage today on @bbcspotlight.bsky.social - with big thanks as ever to @abrokenbattery.bsky.social for recording.
www.youtube.com/watch?v=8DRj...
I loved this piece from Ella - she describes very aptly an experience I’ve had many times.
Fascinating to read her piece, which explains why the difficulty finding the right words to describe ME is in itself an injustice.
Fascinating to read her piece, which explains why the difficulty finding the right words to describe ME is in itself an injustice.
We’ve got a great guest blog today from Ella Barnard 🔥
Ella writes about the hermeneutical injustice of ME, why the right words don’t exist and how we can find them.
www.thereforme.uk/p/the-hermen...
Ella writes about the hermeneutical injustice of ME, why the right words don’t exist and how we can find them.
www.thereforme.uk/p/the-hermen...
April 1, 2025 at 8:21 AM
I loved this piece from Ella - she describes very aptly an experience I’ve had many times.
Fascinating to read her piece, which explains why the difficulty finding the right words to describe ME is in itself an injustice.
Fascinating to read her piece, which explains why the difficulty finding the right words to describe ME is in itself an injustice.
SO proud of my wonderful co-founder @emmagl.bsky.social for this 💪
It’s a scary thing sharing your story and she’s done it so powerfully 💙
It’s a scary thing sharing your story and she’s done it so powerfully 💙
Out today: our co-founder @emmagl.bsky.social on @theguardian.com Today in Focus podcast!
Emma talks about her experience caring for her partner who developed v. severe ME post Covid. She discusses their life before, his diagnosis & going private to find care.
Link in next post 👇
Emma talks about her experience caring for her partner who developed v. severe ME post Covid. She discusses their life before, his diagnosis & going private to find care.
Link in next post 👇
March 25, 2025 at 9:58 AM
SO proud of my wonderful co-founder @emmagl.bsky.social for this 💪
It’s a scary thing sharing your story and she’s done it so powerfully 💙
It’s a scary thing sharing your story and she’s done it so powerfully 💙
Reposted by Karen Hargrave
It’s been a busy few weeks!
Our latest campaign update is out ft. media outings, podcasts and some highlights from our friends at @longcovidkids.bsky.social @longcovidsupport.bsky.social @lcmebillboards.bsky.social
www.thereforme.uk/p/campaign-u...
Our latest campaign update is out ft. media outings, podcasts and some highlights from our friends at @longcovidkids.bsky.social @longcovidsupport.bsky.social @lcmebillboards.bsky.social
www.thereforme.uk/p/campaign-u...
March 25, 2025 at 9:40 AM
It’s been a busy few weeks!
Our latest campaign update is out ft. media outings, podcasts and some highlights from our friends at @longcovidkids.bsky.social @longcovidsupport.bsky.social @lcmebillboards.bsky.social
www.thereforme.uk/p/campaign-u...
Our latest campaign update is out ft. media outings, podcasts and some highlights from our friends at @longcovidkids.bsky.social @longcovidsupport.bsky.social @lcmebillboards.bsky.social
www.thereforme.uk/p/campaign-u...
Reposted by Karen Hargrave
Big thanks to @theleaduk.bsky.social for coverage of #FundThePlan!
@karenlhargrave.bsky.social says “What people are doing is asking the government to invest in us and to choose to spend a relatively modest amount of money on helping us get back to our lives again.”
Link in next post 👇
@karenlhargrave.bsky.social says “What people are doing is asking the government to invest in us and to choose to spend a relatively modest amount of money on helping us get back to our lives again.”
Link in next post 👇
March 24, 2025 at 9:24 AM
Big thanks to @theleaduk.bsky.social for coverage of #FundThePlan!
@karenlhargrave.bsky.social says “What people are doing is asking the government to invest in us and to choose to spend a relatively modest amount of money on helping us get back to our lives again.”
Link in next post 👇
@karenlhargrave.bsky.social says “What people are doing is asking the government to invest in us and to choose to spend a relatively modest amount of money on helping us get back to our lives again.”
Link in next post 👇
Reposted by Karen Hargrave
🎧 New episode out today of the Living with Long Covid podcast ft. @oonaghcousins.bsky.social, @emmagl.bsky.social & @karenlhargrave.bsky.social👇
www.buzzsprout.com/1939141/epis...
www.buzzsprout.com/1939141/epis...
Karen,Emma and Oonagh talk about their campaign group #ThereForME - Living with Long covid
On this episode of the podcast I am fortunate to be joined by Karen, Emma and Oonagh to discuss their campaign group #ThereForME. They came together to form #ThereForME following personal experie...
www.buzzsprout.com
March 23, 2025 at 9:34 AM
🎧 New episode out today of the Living with Long Covid podcast ft. @oonaghcousins.bsky.social, @emmagl.bsky.social & @karenlhargrave.bsky.social👇
www.buzzsprout.com/1939141/epis...
www.buzzsprout.com/1939141/epis...