United Kingdom: News from #There for ME

Hi all - just dropping in to say thanks to Science for ME for supporting the letter to the health and social care select committee! We were really happy to have you on board. If anyone here lives in the constituencies we've flagged, please do write to your MP on the committee if you can and let them know it matters to you. Constituency-level engagement can be quite persuasive for MPs, so we think it can really help (the constituencies are Oxford West & Abingdon, Farnham & Bordon, Isle of Wight East, Worthing West, Chelsea and Fulham, Uxbridge & South Ruislip, Calder Valley, Ealing Southall, Thurrock, Birmingham Erdington). We have a template here: https://docs.google.com/document/d/14Df48CHkQyEOTbv7pHc-cscjyPrq77hcHobLLE7en7k/edit?usp=sharing

I saw there was a question about the process with our letters, which is an interesting one - happy to share a bit in the interest of transparency! To be totally honest, we're still working it out as we go. It's a tricky balance between having some editorial control (past experience has shown me it's very hard to write a good letter by committee!) and enabling people who are part of the process to shape it.

For this one, the idea of a joint letter to Layla Moran/the health select committee came from our steering group, which is made up of the 20 orgs/smaller initiatives who have officially supported the campaign as a whole. I put together an initial draft, then the draft was shared around the steering group for feedback. We incorporated a lot of input from that stage and I think the letter was stronger as a result. We reached out to a few additional people at a later stage, when unfortunately we were no longer able to incorporate feedback. I was in touch with one of the S4ME moderators last week about the Cochrane review letter (which we were very happy to sign!) and so had asked them if they were interested in signing our letter - and we're really pleased they were able to at quite short notice.

We're still welcoming new orgs and initiatives to join our official list of supporters and the steering group, which is probably the best way to be able to feed in early on when we're doing stuff like this. There's now a lot of organisations involved, so it helps to have a list of people we know are broadly supportive to include in the first instance. Science for ME very welcome to join that list if you're interested!
 
rvallee said:
I'm not really concerned by that. This ideology thrives in darkness, needs it. In fact it looks awful in daylight, hence why they avoid it as much as they can. It doesn't mean that it would be a watershed moment for us, but it wouldn't be good for the quacks.

A major reason why this nightmare continues is because they are completely selective with facts, being able to control everything in their echo chambers. But everything about it looks worse in context, and the more context there is the worse it looks.
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I think the issue is partly things like the remit/terms of reference ending up being controlled in very specific ways that make it something quite different to intended or assumed, I don't know what the right terms are right now but remember reading about past things like this having problems because of strange limits meaning things like the York-based something limited a lot of what could be discussed and 'how'? I'd feel more reassured if those who have been on the front line and seen these catches and tricks happen are being sought for insight in the hope of anticipating how things could get played and any drawbacks or things to watch out for etc.
 
Karen Hargrave said:
Hi all - just dropping in to say thanks to Science for ME for supporting the letter to the health and social care select committee! We were really happy to have you on board. If anyone here lives in the constituencies we've flagged, please do write to your MP on the committee if you can and let them know it matters to you. Constituency-level engagement can be quite persuasive for MPs, so we think it can really help (the constituencies are Oxford West & Abingdon, Farnham & Bordon, Isle of Wight East, Worthing West, Chelsea and Fulham, Uxbridge & South Ruislip, Calder Valley, Ealing Southall, Thurrock, Birmingham Erdington). We have a template here: https://docs.google.com/document/d/14Df48CHkQyEOTbv7pHc-cscjyPrq77hcHobLLE7en7k/edit?usp=sharing

I saw there was a question about the process with our letters, which is an interesting one - happy to share a bit in the interest of transparency! To be totally honest, we're still working it out as we go. It's a tricky balance between having some editorial control (past experience has shown me it's very hard to write a good letter by committee!) and enabling people who are part of the process to shape it.

For this one, the idea of a joint letter to Layla Moran/the health select committee came from our steering group, which is made up of the 20 orgs/smaller initiatives who have officially supported the campaign as a whole. I put together an initial draft, then the draft was shared around the steering group for feedback. We incorporated a lot of input from that stage and I think the letter was stronger as a result. We reached out to a few additional people at a later stage, when unfortunately we were no longer able to incorporate feedback. I was in touch with one of the S4ME moderators last week about the Cochrane review letter (which we were very happy to sign!) and so had asked them if they were interested in signing our letter - and we're really pleased they were able to at quite short notice.

We're still welcoming new orgs and initiatives to join our official list of supporters and the steering group, which is probably the best way to be able to feed in early on when we're doing stuff like this. There's now a lot of organisations involved, so it helps to have a list of people we know are broadly supportive to include in the first instance. Science for ME very welcome to join that list if you're interested!
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Thank you for the update Karen, and for the campaign! I will see if I can drum up some support in Oxford, my old stomping ground.
 
Robert 1973 said:
Good to see that S4ME is a signatory. Thanks to Karen and the team for organising this and coordinating this with so may organisations.

With the support of the countess of Marr I submitted a proposal for a inquiry by the health select committee via my MP several years ago. I can’t remember the numbers but the ratio of inquiries to proposals is exceedingly low so the odds are always stacked against but this probably has as good a chance as any due to the chair’s interest in LC and the level of support.

When I submitted my proposal Sarah Wollaston was chair. It was only later that I discovered she was friends with SW. In retrospect, I think it was probably the wrong time for an inquiry anyway. Whether or not now is the right time I’m not sure. I can see positives and negatives.
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Me neither. Yes positives and negatives.

I don’t know if we have enough in our corner yet.
 
There’s definitely a case to be made that with Layla Moran in the chair of that committee the chance of at least getting heard is much better than in the past. Taking it to a Select Committee is a step up from the backbench debates, if successful a step up in political pressure.

true It can take a hell of a long time but it is important to keep trying, as shown by the post office, Hillsborough
 
NelliePledge said:
There’s definitely a case to be made that with Layla Moran in the chair of that committee the chance of at least getting heard is much better than in the past. Taking it to a Select Committee is a step up from the backbench debates, if successful a step up in political pressure.

true It can take a hell of a long time but it is important to keep trying, as shown by the post office, Hillsborough
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Yes. I wasn’t suggesting not trying to change things.

I am unsure if sufficient ground work has been done for this to land well. But the there for ME people do have tons of campaign experience and political connections so maybe that will make up for the disconnected disorganised state of or otherwise transform advocacy. Rapidly enough for us to get strong enough to force this through and also get a satisfactory result.

With LC people being more organised, due to the all at once mass disabling event, their numbers somewhat make up for lack of physical capacity for individual sufferers. There is an opportunity.

Especially important to push government now that Long Covid is swelling our numbers so, and that the government is responding by panic and punitive measures trying to force everyone back to work, rather than insisting on workplace and education safety measures and infection control measures across the land in this still ongoing pandemic that is also causing organ damage to the population.



I am afraid that with the major parties so hostile to disabled people asking them to agree to have look at their own failures might not get us where we need to be. I don’t know if we have built leverage. But maybe we could do so as we go along.

Certainly post this inquest over a lack of feeding support and the prevention of future deaths report it feels important to push the issue further whilst momentum is there.

I hope that they succeed in generating positive attention in government to balance out the negative. Surely soon enough someone’s family member is falling to this sickness and then perhaps some self interested care will kick in.
 
NelliePledge said:
There’s definitely a case to be made that with Layla Moran in the chair of that committee the chance of at least getting heard is much better than in the past. Taking it to a Select Committee is a step up from the backbench debates, if successful a step up in political pressure.

true It can take a hell of a long time but it is important to keep trying, as shown by the post office, Hillsborough
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Compensation for first responders suffering health problems from working on 9/11 took about 20 years. Can't remember when but it was only something like 3-4 years ago that it passed through the US congress. Similar with the burn pits and some other health issues from environmental hazards during the Iraq war: part deux. For US soldiers, of course. Obviously the Iraqi population suffered more than their own share of it.

Something that's really important to raise in trying to get the attention of Jon Stewart. He was involved in both causes and of course so was Simon Wessely, on opposite sides. That's such a huge hook IMO.

Of course there are ways to present the timeline for the tragedy of ME/CFS that make it go back many decades more, so it wouldn't make sense to start the count at any less than 20 years. Long Covid is the backdrop that can end the gridlock.
 
ThereForME: The Dark and Silent Abyss
How do you care for someone when light and sound cause pain?

This week’s post comes from Galen Warden, whose adult son, James, has Very Severe ME. Like many with ME, he suffers from hypersensitivity to light and sound, adding to the challenges he and his mother face navigating his care.

Whilst they live in the States, their experience is shared by so many here in the UK caring for loved ones, including Karen and Emma. Her account makes clear the difficulties providing appropriate care for people with Severe ME and how the illness can affect everything. What follows is an abridged excerpt from Chapter 7, ‘The Dark and Silent Abyss’, of her forthcoming book.
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Today Oonagh Cousins of the #There for ME campaign has posted a blog. Not sure I am in the right place but I couldn't find a thread for the blogs from this campaign. MOD- please could you place where it should go. Done

Campaign Update #11: #ThereForME across the continent
From #ThereForME HQ, to Rome and Switzerland
OONAGH COUSINS
NOV 19
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As we continue to push forward with our campaign, this week we can bring you updates from three different locations.

#ThereForME HQ
This weekend the three of us will meet in person for the very first time!

When Karen and Emma launched the campaign in July, their focus was on the first steps of launching a campaign. They had big ambitions, but I (Oonagh) don’t think they could have predicted how quickly it would take off or the impact it would have in such a short time. I was delighted to join a few weeks later and it has been brilliant to see how things have developed. It’s no surprise though—Karen and Emma have a very complimentary set of skills for a campaign.

We’re now in a position to think more strategically about the long-term direction of #ThereForME. With plenty of Christmas party food and mulled wine to fuel our discussions, we plan to work on developing a theory of change and a campaign strategy to guide our efforts in the new year. We already have a lot of food for thought but a reminder that our suggestions box is always open! We’ll be going through suggestions on Saturday while we think through our future plans.

Rome: Advancing Long Covid Research in Children
Our #ThereForME ambassador Dr. Binita Kane recently joined leading experts at the International Meeting for Long Covid in Children in Rome. This conference brought together researchers from all over the world. The discussions were focused on sharing cutting-edge research, identifying gaps in knowledge, and setting priorities for future collaborative studies.

We were absolutely thrilled to receive this photo from Binita, featuring so many of our heroes in one place, all working toward supporting those impacted by Long Covid.

Switzerland: Body Mapping in the News
I’m happy to share that the research project I’ve been working on at Oxford University with Professor Beth Greenhough and Dr Maaret Jokela Pansini (spotlighted on a #ThereForME blog) was recently featured in the Swiss newspaper NZZ.


The article discusses body mapping, but it also touches on my personal experience with Long Covid. One aspect I was glad to see included was the fact that losing my rowing career wasn’t the hardest part of my experience with the illness. The media often gravitates toward the dramatic story of an athlete missing the Olympics due to Long Covid, but for me, that focus misses the bigger picture.

Losing my rowing career is something I can manage. Sport is unpredictable, and I’d lived with the possibility that I might not achieve my Olympic dreams throughout my rowing career. What was far more challenging about Long Covid was not being able to do basic, everyday tasks—things like getting out of bed in the morning, preparing meals, or spending time with family and friends. And the duration and uncertainty of it all—would I ever get better and get a normal life back? As the article quotes "I was in my mid-twenties, I should have been in the prime of my health. But I spent them waiting for my body to recover. It wasn’t just weeks or months—it was years, time I can never get back." It's the grief for a life that wasn’t lived—the things I could have done, the people I could have met, the experiences I could have had.

I’m really glad to see this angle covered in the news because I’ve always been aware of how the media can sometimes use my story in a way that downplays the severity of these illnesses. While this is usually unintentional, as Karen explained in her last post, narratives matter. We must be unflinching in addressing how severely this disease impacts lives—I don’t want my story to be reduced to just missing the Olympics.

So, from #ThereForME HQ to Rome and Switzerland, there’s a lot afoot. Behind the scenes, we’re working on a project we’re very excited about and can’t wait to share it with you very soon. Keep your eyes peeled! Much more from us soon.

Thanks for reading #ThereForME! Subscribe for free to receive new posts and support our work.

There are some photos enclosed within the article.
https://substack.com/redirect/e2fb3...0.kZ1ttShDqlmbWXeju46cNDlANB7EH--2gffKRWLdmeQ



I loved Oonagh's discussion of what was most challenging for her about the losses Long Covid brought to her. It wasn't the loss of her Olympic dreams but

"What was far more challenging about Long Covid was not being able to do basic, everyday tasks—things like getting out of bed in the morning, preparing meals, or spending time with family and friends. And the duration and uncertainty of it all—would I ever get better and get a normal life back? " We all can relate to that.
 
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"With plenty of Christmas party food and mulled wine to fuel our discussions..."

I remember enjoying these things too, even with ME, but now so many things are not suitable, including wine (can only manage one glass). Party food too has to be extremely limited.
 
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/
 
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