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Karen Hargrave

@karenlhargrave.bsky.social

Co-founder ThereForME | www.thereforme.uk Independent researcher & policy analyst | Migration & displacement | Projects with @odi-global.bsky.social | www.linkedin.com/in/karen-hargrave

169 Posts1274 Follower701 Folgt
Karen Hargrave@karenlhargrave.bsky.social · 2w ago

When will ME get the political attention it needs and deserves? Pleased to see @theguardian.com publish our letter in response to last week’s piece from @georgemonbiot.bsky.social

ThereForME@thereforme.bsky.social · 2w ago

The Guardian has published our letter responding to George Monbiot's article about how people with ME are abandoned, dismissed and gaslighted. We point out the inadequate political attention, and call for action from the Health & Social Care Select Committee. www.theguardian.com/society/2026...

George Monbiot is right to draw attention to the “shocking social crisis playing out behind closed doors” for people living with ME. Not only is ME a devastating condition, but too often those affected are failed by the very systems meant to care for them. The level of political attention the issue has received is nowhere close to the scale of the problem. The government’s strategy on ME, published over a year ago, lacked both substantive funding and outcome targets. Its key action for those affected by the most severe form of ME – “exploring” whether a specialised service could be commissioned – is now delayed until April 2027. We hope that, as a first step, the health and social care select committee will take up this critical issue as a matter of urgency. Karen Hargrave and Emma Gore-Lloyd Co-founders, ThereForME charity
ThereForME@thereforme.bsky.social · 3w ago

George Monbiot was nominated for last year’s ThereForME Advent Calendar for using journalism to shine a light on failings faced by pwME. Today, he writes that too often people with ME are abandoned, while discredited treatments continue to be prescribed. He’s right.

George Monbiot@georgemonbiot.bsky.social · 3w ago

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

Karen Hargrave@karenlhargrave.bsky.social · 2mo ago

Some really brave personal accounts in this one of challenges people with ME and Long Covid are facing with social care 👇 Big thanks to our authors 💪

ThereForME@thereforme.bsky.social · 2mo ago

In our work with #ThereForME, we come across many people with ME and Long Covid who face challenges accessing social care support. Today's guest post shares stories from three authors from across the UK. Thank you to Cass, Marianne and our anonymous contributor for sharing your experiences 💙

"My experience of trying to access [social care] support has left me feeling unsafe, excluded from decisions and traumatised. It has also contributed to unnecessary deterioration in my health" Anonymous. New #ThereForME Substack post.
Karen Hargrave@karenlhargrave.bsky.social · 2mo ago

🎂 @thereforme.bsky.social just turned 2 🥳 I enjoyed taking some time out to think strategy and where our advocacy should go next. Bring on Year 3! You can read my two cents here 👇

ThereForME@thereforme.bsky.social · 2mo ago

"The political landscape has changed, and if we want different outcomes, our advocacy has to evolve with it." In today's update our co-founder @KarenLHargrave shares her reflections going into year 3 of #ThereForME. Link in next post 👇

#ThereForME Update 34. Year three of #ThereForME. The mission hasn't changed - but our advocacy must. New #ThereForME Substack post.
Karen Hargrave@karenlhargrave.bsky.social · 3mo ago

A highly recommended read from my wonderful co-founder @emmagl.bsky.social! Emma unpacks the data problem we have with ME, why it matters and what we (#ThereForME included) should all be doing about it. More here 👇

ThereForME@thereforme.bsky.social · 3mo ago

You may have noticed there's a new PM in town! Today's post from our co-founder @GoreLloyd on our #ThereForME blog outlines a problem his government will inherit when it comes to ME. Houston, we have a data problem. Link in next post 👇

"Data on ME matters because numbers drive resources and political attention. If the number under-represents the scale of the issue, the response will be insufficient." - Emma Gore-Lloyd, #ThereForME. New #ThereForME Substack post
ThereForME@thereforme.bsky.social · 3mo ago

You may have noticed there's a new PM in town! Today's post from our co-founder @GoreLloyd on our #ThereForME blog outlines a problem his government will inherit when it comes to ME. Houston, we have a data problem. Link in next post 👇

"Data on ME matters because numbers drive resources and political attention. If the number under-represents the scale of the issue, the response will be insufficient." - Emma Gore-Lloyd, #ThereForME. New #ThereForME Substack post
Karen Hargrave@karenlhargrave.bsky.social · 5mo ago

Great to sit down (virtually) for an interview with Carolyn to talk about what the future holds for Forward ME. We’ve been working closely with Forward ME lately and very pleased to see its recent revamp 💪

ThereForME@thereforme.bsky.social · 5mo ago

🙌 Our #ThereForME blog is back from hiatus! In today's post, @karenlhargrave.bsky.social interviews Carolyn Leary, the new chair of Forward ME (a coordinating body for ME orgs). Carolyn explains how she got into ME advocacy, what you need to know about Forward ME and her future plans.

"My personal track for this year is that ForwardME must hold the government to account on the final delivery plan. We must do everything we can to keep challenging them on progress and process." Carolyn Leary, Chair of Forward ME. New #ThereForME Substack post.
Karen Hargrave@karenlhargrave.bsky.social · 5mo ago

I spoke to @theipaper.com recently about the battle I’ve faced the past two years covering the spiralling costs of James’ care. Since the interview our local authority has offered a new care package that will take the pressure off - but still doesn’t reflect James’ 24/7 needs.

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Karen Hargrave@karenlhargrave.bsky.social · 5mo ago

If you follow us at @thereforme.bsky.social you may have noticed we’ve been a little quiet lately. We’ve needed some time out to focus on our complicated lives & get some ducks in a row 🦆 But we’ll be back soon - a short update here 👇

ThereForME@thereforme.bsky.social · 5mo ago

We aren't running a campaign this year for World ME Day - but people affected by ME, and the immense suffering faced every day, are on our mind today as much as ever. We’ll be looking at how we can make the most of opportunities when we're back from hiatus later this month 💙

World ME Day 2026. #ThereForME
Karen Hargrave@karenlhargrave.bsky.social · 7mo ago

Such deeply frustrating news this week from DHSC. #PwME deserve so much better - and we’re doing what we can to make this clear.

ThereForME@thereforme.bsky.social · 7mo ago

This week we were informed by DHSC, alongside other organisations, that DHSC and NHS England have delayed discussions on commissioning a specialised service for very severe ME until April 2027. This means yet another year without NHS care for people with very severe ME. (1/3)

Karen Hargrave@karenlhargrave.bsky.social · 8mo ago

I wrote for our @thereforme.bsky.social blog about our experiences trying to access CHC funding to cover the spiralling costs of James’ care. CHC funding is a mess in general, but there is no doubt in my mind that systemic NHS failures for PwME played a role. I explain more here 👇

ThereForME@thereforme.bsky.social · 8mo ago

In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding. She explains why CHC funding for very severe ME is an issue that deserves attention. 🔗 in next post 👇

A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.
Karen Hargrave@karenlhargrave.bsky.social · 9mo ago

It’s been a hard few days with the heating down, but this has given us a boost. James’ fundraiser reached its £5k target! A huge thanks to everyone on here who donated. I know many from the ME community will have limited income, so we’re incredibly touched by your support🙏🙏

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Karen Hargrave@karenlhargrave.bsky.social · 10mo ago

Today James turns 39 🎈 It’s a hard day for us both, but also a time to think about how, despite the challenges, I’m so lucky to have had this wonderful man in my life for the past 12 years. In lieu of gifts we’ve been raising money for Edinburgh University’s ME research 👨‍🔬

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Karen Hargrave@karenlhargrave.bsky.social · 10mo ago

We had a small social media scheduling oops yesterday 🫣 So, better late than never - let’s show @binitakane.bsky.social some love! 💙 Thanks for being #ThereForME as a doc + patient advocate. We’re very proud to have you as an Ambassador, Binita! 👏👏

ThereForME@thereforme.bsky.social · 10mo ago

Bonus points if you noticed our post for Dec 21 was missing! Here it is now: Thank you for being #ThereForME, Dr @binitakane.bsky.social ! Binita is a private consultant w a special interest in ME & Long Covid, a #ThereForME Ambassador + fierce advocate for pwME. Nom'ed by @alexisme.bsky.social. ✨

Photo of a smiling woman in a polaroid-style frame on a starry background, marked with a bright star labelled ‘21’. Text says: ‘Thank you for being #ThereForME, Dr Binita Kane!’ and ‘Advent Calendar 2025’.
Karen Hargrave@karenlhargrave.bsky.social · 10mo ago

Thank you Ed Davey and the @libdems.org.uk for being #ThereForME this year! Your support has meant the world to us at @thereforme.bsky.social and for people with ME across the UK ⭐️💛

ThereForME@thereforme.bsky.social · 10mo ago

December 22nd. Thank you for being #ThereForME, Sir Ed Davey & the Lib Dems @libdems.org.uk! This year the LibDems have been key players championing the need for improved support for people with ME in parliament. Nominated by Jonah Weisz @weiszguy.bsky.social ✨

Photo of a smiling man wearing a pink shirt in a polaroid-style frame on a starry background, marked with a bright star labelled ‘22’. Text says: ‘Thank you for being #ThereForME, Sir Ed Davey & the Lib Dems!’ and ‘Advent Calendar 2025’.
Karen Hargrave@karenlhargrave.bsky.social · 10mo ago

I am always inspired by Jo’s ability to balance total frankness about the unrelenting horror of v severe ME with a talent for finding (and sharing) the signs of hope. The Red Leaf project is an incredible reflection of that🍁 Thanks for being #ThereForME, Jo!

ThereForME@thereforme.bsky.social · 10mo ago

December 20th. Thank you for being #ThereForME, Dr Jo Greer! Jo is the founder of the Red Leaf Creative Collaborative, a group of creatives that shares artistic expressions of hope for #PwME. Nominated by Shirley (and everyone at The Red Leaf Creative Collaborative). ✨

The Red Tree and ME logo in a polaroid-style frame on a starry background, marked with a bright star labelled ‘20’. Text says: ‘Thank you for being #ThereForME, Dr Jo Greer!’ and ‘Advent Calendar 2025’.
Karen Hargrave@karenlhargrave.bsky.social · 10mo ago

Another awesome advent calendar star ⭐️ Thank you Alice! Earlier this year I nominated James for a @smileformeuk.bsky.social and it really brightened up a hard month for him ☀️

ThereForME@thereforme.bsky.social · 10mo ago

December 18th. Thank you for being #ThereForME, Alice @smileformeuk.bsky.social! Alice is the founder of Smile for ME, a charity that sends personalised presents (“Smiles”) to people with ME and their carers. Nominated by Team SalShirl ✨

Photo of a smiley lady in a polaroid-style frame on a starry background, marked with a bright star labelled ‘18’. Text says: ‘Thank you for being #ThereForME, Alice@SmileForME!’ and ‘Advent Calendar 2025’.
Karen Hargrave@karenlhargrave.bsky.social · 10mo ago

Another very deserving entry in our advent calendar! Thanks @georgemonbiot.bsky.social for everything you’ve done to bring the issue to light and uncover the #GreatestMedicalScandal 🙏

ThereForME@thereforme.bsky.social · 10mo ago

December 17th. Thank you for being #ThereForME, @georgemonbiot.bsky.social! George is a well-known journalist who has focused on uncovering the reality of the “greatest medical scandal of the 21st Century”. Nominated by Carole B @cabruce.bsky.social. ✨

Photo of a man in a scarf in a polaroid-style frame on a starry background, marked with a bright star labelled ‘17’. Text says: ‘Thank you for being #ThereForME, George Monbiot!’ and ‘Advent Calendar 2025’.