#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

Trial by Error by David Tuller: Interview with Karen Hargrave, Co-Founder of #ThereForME

Description:

Karen Hargrave is co-founder of an advocacy campaign called #ThereForME, which was launched this past summer to draw public awareness to the UK’s lack of care and treatment and to call “for an NHS [National Health Service] that’s there for people with ME and Long Covid.” The campaign has drawn significant media attention, especially in conjunction with the news coverage of the inquest into the case of Maeve Boothby O’Neill, 27, who died in 2021 of complications from ME despite having been hospitalized three times.

Hargrave is a self-described “policy nerd” with a background in the field of humanitarian relief. During the pandemic, both she and her husband developed ME after acute bouts of Covid-19. While Karen has recovered substantially, her husband remains severely disabled—bedbound, unable to tolerate solid food, unable to read or watch TV. She and Emma, another fellow carer with a severely disabled husband, bonded over their experiences and joined forces to create #ThereForME. Karen and I spoke earlier today about how the campaign got off the ground and what they hopes to accomplish.

https://virology.ws/2024/11/21/tria...with-karen-hargrave-co-founder-of-thereforme/

 

Thanks, @dave30th. Superb interview with Karen Hargrave - she's a fantastic asset to our community.

 

Great interview so thanks @Karen Hargrave and @dave30th.

I think the responses to the section 28 results of Maeve's inquest should be posted fairly soon, around the 3rd December which hopefully will attract attention including #There for ME who are contributing a great deal to our cause.

 

Thank you @Karen Hargrave and @dave30th

 

Just wanted to show appreciation to the #ThereForME team for the excellent advent calendar idea. Really encouraging to see so many allies have engaged with this behind the scenes.

Quote from Substack:

“We’ll be opening our advent calendar doors each morning at 9am on Instagram, Twitter/X, Bluesky and Facebook. But we’ll be sharing a round-up here every Tuesday with all the doors we’ve opened in the previous week, for those who prefer to open their advent calendar at a staggered pace.”

 

Here's #ThereForME's Twitter account, showing the advent calendar posts. Great to see all these messages of support (I was pleased to see one from Rory Stewart, I'm just reading his book).

 

I’m impressed that the campaign has got Rory involved, and I hope that is something that can be built on, but to me his message reads like the sort of response that politicians give when they don’t want to commit to a position on something (perhaps because he doesn’t feel that he has enough understanding of the issues yet). I think it’s the only message so far which doesn’t mention ME, and unlike the others he doesn’t actually ask for anything particularly useful like more funding for research or better services:

“My Christmas wish for people with Long Covid is that you are able to feel welcome, accepted and cherished over the holiday season.”
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Hard to think of anyone who would disagree that but it’s not exactly a call to action.

[Edit to add: I echo Sasha’s thanks to the campaign for organising this.]

 

I watched the rest is politics and saw the part of the show where he talked on long covid (I think it was definitely that rather than me/cfs) a while back. It might be a useful clip to look up as I can’t remember it but it would be useful to get the detail

 

Yes, still , Rory is only one so far not to mention m.e & he chooses that totally apolitical statement , a guy whose job and media activity is about how to create positive change in society. Whilst focusing on belief it is also pretty insensitive because many, due to circs they are unable to change , will not be feeling particularly cherished , let alone cared for and Pampered as desired over Xmas . We can't make people who don't see this as their cause become an ally and I don't think he will be one.