#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/
 
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.”
 
Fizzlou said:
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.”
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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).
 
Sasha said:
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).
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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.”
​
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.]
 
Robert 1973 said:
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.”
​
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.]
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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
 
Robert 1973 said:
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.”
​
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.]
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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.
 
https://www.thereforme.uk/p/christmas-campaign-week-1
https://www.thereforme.uk/p/christmas-campaign-week-2
https://www.thereforme.uk/p/christmas-campaign-week-3
https://www.thereforme.uk/p/christmas-campaign-week-4

Comments from 2 Substack Members said:
I just want to say thankyou to all these beautiful people for having our backs, you are all stars on my Christmas tree. With the widespread advent of longcovid it is impossible to ignore ME/CFS any longer and although everything about it sucks, it is much better to face reality and do something constructive about it than be clobbered by it every generation. Its time for change

Huge thanks to all the advent stars for their support, it has really lifted my spirits to know these public facing kind souls have heard and understood. (Especially after unexpectedly seeing ME nastily misrepresented in a BBC drama this week that should have been something to enjoy at Christmas!) Thank you so very much Karen and team ❤️

24+ Christmas heroes! Thank you all for being #ThereForME. The plink plink plink on the stone of ignorance continues undaunted. Plink, in case you were wondering is the sound a drip of wisdom makes when it hits the stone of ignorance and wears it away ever so slightly. We will get there.
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Fizzlou said:
...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.....

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).
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bobbler said:
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
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Cinders66 said:
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.
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boolybooly said:
#ThereForME has published its final advent calendar of 24+ ME supporting celebrities.

I am deeply touched by their support and the work put into this and hope we can help raise the profile of this campaign a bit, somehow.

Maybe hit the like button and restack if you are registered with substack. Any suggestions?

https://www.thereforme.uk/p/christmas-campaign-week-4
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Binkie4 said:
'Like' button pressed@boolybooly .
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Week 2 said:
It’s Rory Stewart! Rory is one half of the Rest is Politics podcast, which covered Long Covid earlier this year. His message:

“My Christmas wish for people with Long Covid is that you are able to feel welcome, accepted and cherished over the holiday season.”

You can listen to Rory discussing Long Covid on the pod here.
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Is he saying its a lifestyle choice to feel welcome, accepted and cherished on Xmas day of all days. If so it would imply those who aren't welcomed etc brought it on themselves or just imagined it. If so it would also mean those who are welcomed might also be deluded, or just deserved it.

Crisis at Chrismas doesn't say such things to the homeless they so charitably host. Maybe he can clarify for us, say some more though our campaign (and through homeless campaigns too)

Maybe "able ... to feel" meant "enabled to feel" but even so the choice of words could be a sign of verbiage creep, since he does welcome and accept and cherish people with Long Covid and ME / CFS and most simply meant to say:

“My Christmas wish for people with Long Covid is that you are welcomed, accepted and cherished over the holiday season.”

Meaning the onus is not on us albeit we be onerous petitioners we are not pleading that hard for a hug

Edit to add: I understand he would refer only to LC as that was on his watch
 
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bicentennial said:
https://www.thereforme.uk/p/christmas-campaign-week-1
https://www.thereforme.uk/p/christmas-campaign-week-2
https://www.thereforme.uk/p/christmas-campaign-week-3
https://www.thereforme.uk/p/christmas-campaign-week-4








Is he saying its a lifestyle choice to feel welcome, accepted and cherished on Xmas day of all days. If so it would imply those who aren't welcomed etc brought it on themselves or just imagined it. If so it would also mean those who are welcomed might also be deluded, or just deserved it.

Crisis at Chrismas doesn't say such things to the homeless they so charitably host. Maybe he can clarify for us, say some more though our campaign (and through homeless campaigns too)

Maybe "able ... to feel" meant "enabled to feel" but even so the choice of words could be a sign of verbiage creep, since he does welcome and accept and cherish people with Long Covid and ME / CFS and most simply meant to say:

“My Christmas wish for people with Long Covid is that you are welcomed, accepted and cherished over the holiday season.”

Meaning the onus is not on us albeit we be onerous petitioners we are not pleading that hard for a hug

Edit to add: I understand he would refer only to LC as that was on his watch
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To be fair I think having listened to him enough talking on many other things that’s just to do with his personal way of speaking/turns of phrase (he’s wordy but I think he uses ‘be able to’ type bits a lot as introducers to ‘the meat’) rather than if someone else who’d said that it would stand out as an add in - and I’m pretty sensitive to these things because I get it ALL the time particularly from old friends etc who won’t look you in the eye and validate truth so skirt stuff.
 
Oh good I had hoped it was just his manner of speech, as he seemed to be an outlier with potential

I can take your word for that @bobbler as your perception is evidentially spot on, so - it being a well-observed habit - then would the wordy verbiage indicate that maybe its a way around telling a population in a Xmas message that they are being unkind ? While also skirting round us. And in other instances maybe its his adept way round without alienating the skirters / carnivores / meat

Or come to think of it maybe you mean its us being skirted and.or the unkind audience ? Skirted by someone who can't yet reconcile the cognitive dissonance. Or, in his case, maybe he can but he knows a mass audience still can't. Maybe he could assist the APPG On Rethinking ME / CFS when he has worked this one out. If my recall is correct he has army experience from the frontline I think, as an officer
 
bicentennial said:
Oh good I had hoped it was just his manner of speech, as he seemed to be an outlier with potential

I can take your word for that @bobbler as your perception is evidentially spot on, so - it being a well-observed habit - then would the wordy verbiage indicate that maybe its a way around telling a population in a Xmas message that they are being unkind ? While also skirting round us. And in other instances maybe its his adept way round without alienating the skirters / carnivores / meat

Or come to think of it maybe you mean its us being skirted and.or the unkind audience ? Skirted by someone who can't yet reconcile the cognitive dissonance. Or, in his case, maybe he can but he knows a mass audience still can't. Maybe he could assist the APPG On Rethinking ME / CFS when he has worked this one out. If my recall is correct he has army experience from the frontline I think, as an officer
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Yeah, all I can say is that if it came from someone who was usually less like that in their turn of phrase then I'd be pretty seriously sure it was 'a device' (and had insinuations that weren't great for us), but this fits with his way of speaking on most things.

It's frustrating because I watched the rest is politics on TV, I think before it turned into the election special and remember that had a bit on Long Covid where he spoke on it, and felt the need to rewatch it back because I can't remember it specifically.

but that series is hard to find... or know I've found ... because its format is unusual. I thought what I watched was on ITV but it could have been Channel 4 (which the election special is) a search via TV brings nothing up under that name. And when googling because they do podcasts which you can get as videos and the videos of the TV shows are mixed in with this it is hard to tell if there are any 'missing'.

Either way his experience is certain one where it is clear the friend he mentions is genuinely very close and he respects/hears him (I guess that's tricky because you don't want to cross lines in the way you'd talk about someone else's situation either - and you can sense that care and tension of that when he gives snippets of it too).

I'm hoping I'm OK to post these, as I've given times straight after to the bit where long covid is mentioned/that's why I'm posting
What I've found so far is:

The Rest Is Politics | 320. Labour’s struggle to define itself, Hezbollah vs. Israel, and understanding Long Covid at 48.02 from sept 2024

Question Time: The War On Drugs, a Tory Green Party, and Long Covid at 23.10 (response to a question, mentions his friend) from a year ago - I think this is the same one that there is a brokenbattery snippet of online somewhere too.

What Is Sunak’s National Service Pledge And Will It Work? 42.56 it gets a mention because Alastair Campbell reccommends the below book by Kate Weinberg and Rory briefly mentions how serious LC is in relation to his friends experience from around just before time of electrion
there is this article which talks about Kate Weinberg (by someone else with chronic illness): There’s Nothing Wrong With Her by Kate Weinberg: The new novel describing the unique hell of long Covid and chronic illness | The Independent


If I had to guess from listening to Rory in the above bits, he gets that not only is LC awful but the ignorance too is both isolating and for various reasons (like people minimise fatigue and brain fog is misunderstood) hard to get past ie it is far worse than something that is 'because people are sensitive' and makes life and 'care' worse/harder. Is aware to be careful and trying to make sure he doesn't make anything worse with what he says or overstep.

I think about when someone already ill with ME gets something else and you know they mightn't 'feel better soon', and they might not either have someone bringing them soup or be likely for that to change overnight/soon. And even though you want to 'wish that for someone' it is also invalidating/minimising of their situation to say it in the wrong way. But we all wish for it one day to be better. But they also don't want an essay of a text message.

And I sense he is picking up on the full picture going on (he seems to, as you say, be very good with that ability to realise there are lots of angles going on and trying to point out empathy in how that coincides to create a specific problem for those in the centre of those factors for eg when he's described political and human situations in other countries etc - his background also includes foreign affairs/diplomacy/international development and also being a writer about different parts of the world and so on: About Rory | Rory Stewart).

So without overthinking and putting words into mouths I just think if I couldn't easily say something that was both straightforward and potentially avoided landmines it might come across like this because I was 'dancing' trying to make sure I accommodated all situations. So that's a possibility which could add up here?
 
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boolybooly said:
Karen Galpin about caring for her daughter Sophia who has severe ME.

Title - “This is not about not trying hard enough” A glimpse into daily life with very severe ME.

"I tap the door gently before entering so that she can prepare herself for my presence. This involves her putting an eye mask over her dark glasses so that she can’t see me walking around the room – the movement is overstimulating for her and triggers her vertigo. I tiptoe around the bed and sit next to her as quietly as I can because she is extremely sensitive to sound, to the point where loud noises are painful and harmful."
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This reminds me how very much it matters to stay within the parameters of comfort not to overtax my brain. Although my muscle stamina is still shot, and the faculties provided by my brain still flicker, I can more or less assimilate external signals for as long as I don't tax my brain. This I had forgot
 
bicentennial said:
This reminds me how very much it matters to stay within the parameters of comfort not to overtax my brain. Although my muscle stamina is still shot, and the faculties provided by my brain still flicker, I can more or less assimilate external signals for as long as I don't tax my brain. This I had forgot
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After ten years undiagnosed it took another fifteen for me to unravel the mess my mind had got into trying to cope with the affects of ME on my nervous system and the febrile affects of the constant push crash cycle. I had been living with delirium 24/7 trying to cope with the undiagnosed ME and the demands of an unforgiving society and authorities who insisted on treating me like a criminal skiver instead of someone who was ill and in need of help.


That said this is the latest in my inbox from #ThereForME , I expect most readers are subscribed but its those who aren't who need to know :)

"A Delivery Plan that’s #ThereForME : Six things we'd like to see in the Delivery Plan for ME"

1. Strong action on patient safety
2. Government as a catalyst to accelerate research
3. Doing more with the tools we already have
4. Bolster care in the community
5. Institutional ownership and resources
6. Clear targets and accountability

https://www.thereforme.uk/p/a-delivery-plan-thats-thereforme
 
Some good ideas but frankly the last thing we need is the UK equivalent of a "Cohen Center for Recovery from Complex Chronic Illness".

And I really don't like the concept of IACCs/IACCIs, which seems to be a concept out of the US which is ill thought through. Solve ME previously issued a paper promoting this concept which IMHO would be counterproductive if implemented.
 
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