karenlhargrave.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

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!

submitted 2 days ago • 0 comments

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-...

submitted 9 days ago • 1 comment

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submitted 26 days ago • 0 comments

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...

submitted 26 days ago • 0 comments

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.

submitted 37 days ago • 1 comment

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 💙

submitted 44 days ago • 0 comments

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...

submitted 44 days ago • 0 comments

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 👇

submitted 45 days ago • 2 comments

🎧 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...

submitted 46 days ago • 1 comment

People with ME so want to be better and contribute to society. An ambitious and well-resourced Delivery Plan could make such a difference at relatively small cost. Thank you for asking me to join you in the call to #FundThePlan!

submitted 57 days ago • 1 comment

So excited to be launching this video today! A big thanks to everyone starring in it - including @binitakane.bsky.social @oonaghcousins.bsky.social @tessamunt.bsky.social 👏👏👏

submitted 57 days ago • 1 comment

It was such a pleasure to work with @nickbenton.bsky.social on this piece for our @thereforme.bsky.social blog - out today. Nick writes so eloquently about what it was like to live with very severe ME, the lack of appropriate NHS care and his recent improvement. www.thereforme.uk/p/stuck-at-t...

submitted 64 days ago • 4 comments

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...

submitted 65 days ago • 0 comments

🌟Super article out from #ThereForME covering the momentum for #FundThePlan & the community campaigning together for Long Covid Awareness including: 💙 Our #Postcards4LC 💙 The @lcmebillboards.bsky.social Light Up Challenge 💙 @longcovidsupport.bsky.social banner & launch event

submitted 72 days ago • 1 comment

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...

submitted 72 days ago • 0 comments

I couldn't sketch today, I couldn't stay downstairs, I could only take medication, rest & nap in bed. I hate my health problems, I feel useless. I need treatments but there are none, I need support but there is none. People with M.E need treatment. #FundThePlan #ThereForME #Pwme

submitted 74 days ago • 1 comment

Not that it’s a competition - BUT we’ve had some very moving videos popping up on the other place and insta. Who’s going to be our first here? 🦋

submitted 75 days ago • 1 comment

Dear @wesstreeting.bsky.social & @ashleydaltonmp.bsky.social I’m a carer to my husband James who has very severe ME. He used to be a civil servant. Now he can’t get out of bed or have a conversation. The Delivery Plan for ME is an opportunity to invest in our future. #FundThePlan

submitted 76 days ago • 2 comments

📢 #ME community, we need your help! Details here for how you can join our #FundThePlan campaign (in whatever version is possible within your energy limits) 👇

submitted 76 days ago • 0 comments

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submitted 76 days ago • 0 comments

So grateful to @libdems.org.uk and @helenmorganlibdem.bsky.social for standing up for people with ME! 💛 Great piece in @thetimes.com today calling for an ambitious delivery plan 👇

submitted 78 days ago • 0 comments

Coverage on the ME delivery plan in @thetimes.com today 💪 Quotes in the piece from myself, my husband James (🥰), @actionforme.bsky.social @joplatt.bsky.social @helenmorganlibdem.bsky.social 🧵

submitted 78 days ago • 1 comment

Great read on our Substack today! 👇

submitted 79 days ago • 0 comments

🔍 Some questions asked by @joplatt.bsky.social in Parliament today received a response from the new minister. “There are currently no plans to allocate additional funding to the ME/CFS final delivery plan.” Not good enough.

submitted 79 days ago • 3 comments

Great to see this update from the APPG on ME! 📆 Details below on how you can invite your MP to join the next meeting on 5 March ✍️ New online form to contact the APPG with your concerns and priorities appgme.co.uk/contact-us/

submitted 79 days ago • 0 comments

We made a #valentines card for @ashleydaltonmp.bsky.social 💙 #ThereForME #forgetMEnot

submitted 82 days ago • 0 comments

Today we’ve written to @ashleydaltonmp.bsky.social - sharing congratulations on the new role and asking for commitment that the new delivery plan for ME/CFS will remain a ministerial priority. Our #ThereForME campaign would welcome the opportunity to meet to discuss our recommendations.

submitted 85 days ago • 0 comments

Our latest #ThereForME campaign update is out today! Read to find out how we’ve been keeping busy, some updates from friends of the campaign and details for how you can help us keep up the momentum 👇 www.thereforme.uk/p/campaign-u...

submitted 86 days ago • 1 comment

Really well done piece out today from Rebecca Logan, telling her story and how it led to campaigning for better care👇

submitted 93 days ago • 0 comments

🔍 Spotted in parliament - Q from @alisonebennett.bsky.social on Prevention of Future Deaths report and steps that has been taken to make sure #ME care and training is adequate.

submitted 97 days ago • 1 comment

If you’ve been thinking about writing to your MP - there’s no time like the present! (energy permitting) We’ve updated our #ThereForME guide - so you can let your MP knows that the new delivery plan for ME matters to you. Everything you need here 👇

submitted 97 days ago • 0 comments

Very grateful to everyone who has used valuable energy to share their experiences 🙏 I shouldn’t be surprised by now but it’s so desperately sad to see some of the responses. Thank you for helping to make what we’re living through visible 💙

submitted 97 days ago • 2 comments

#ThereForME has collaborated with @patientsafetylearning.org on this blog looking at accessibility of NHS care for people with ME and Long Covid. We’re collecting community experiences and would love to hear from you. Details below 👇

submitted 98 days ago • 0 comments

Really great to collaborate with @patientsafetylearning.org on this blog looking accessibility of NHS care for #PwME #PwLC! We’re collecting community experiences and would love to hear from you 👇

submitted 98 days ago • 0 comments

🆕For healthcare to be safe it needs to be accessible. But what does this look like for people with ME and Long Covid? This blog from @thereforme.bsky.social explores the barriers that impact access to NHS care for people with ME and Long Covid www.pslhub.org/learn/improv... #ThereForME

submitted 98 days ago • 1 comment

This from @francesryan.bsky.social is achingly familiar. My husband is completely bedbound w/ v severe ME. He cannot meet any basic needs without help. I’ve lost count of the times I’ve had to justify why he can’t be left alone without care. It’s exhausting. www.theguardian.com/commentisfre...

submitted 99 days ago • 1 comment

Great to see @karenlhargrave.bsky.social sharing this feedback at the National T&F Group today. Another good meeting, but gov and DHSE have a MAMMOTH task ahead to deliver. Very promising discussions, let’s hope it can translate to meaningful action and change for people with #ME 🤞🏽

submitted 99 days ago • 0 comments

A big thanks to everyone who shared their feedback and ideas with us 🙏💡 It was great to hear many of our priorities for the delivery plan resonated - but also to have some fresh insights from the community!

submitted 100 days ago • 2 comments

In today’s #ThereForME substack we share some of the feedback we received from the community about your priorities for the new Delivery Plan for ME/CFS. 6 things you’d like to see in the delivery plan 👇 www.thereforme.uk/p/six-things...

submitted 100 days ago • 0 comments

We saw some requests for transparency re: who is involved in the Task & Finish group for the new Delivery Plan for ME/CFS. We raised this with DHSC who have kindly given us permission to share the list. On our new Delivery Plan explainer here 👇 www.thereforme.uk/p/about-the-...

submitted 105 days ago • 3 comments

Really delighted to have @davetuller1.bsky.social guest on our #ThereForME blog! Read the ultimate explainer on what went wrong with the PACE trial here 👇

submitted 107 days ago • 1 comment

Six things #ThereForME wants to see in the Delivery Plan for ME 👇🏼 By @karenlhargrave.bsky.social and @binitakane.bsky.social

submitted 114 days ago • 0 comments

@karenlhargrave.bsky.social and I have written a blog on our hopes for the government’s Final Delivery Plan for ME and other Infection Associated Chronic Conditions like Long COVID ⬇️

submitted 114 days ago • 1 comment

📢 Today @karenlhargrave.bsky.social and @binitakane.bsky.social will be representing #ThereForME on the Task & Finish group for the new delivery plan for ME. Today's #ThereForME blog outlines six things they'll be looking out for as the delivery plan is finalised. www.thereforme.uk/p/a-delivery...

submitted 114 days ago • 7 comments