UK Action for ME Big Survey 2025
- Thread starter Trish
- Start date
-
- Tags
- afme katharine cheston survey
bicentennial
Senior Member (Voting Rights)
Katharine Cheston's introduction to the Big Survey, asking researchers a big question:
"Hi, I am Katharine...
"although on your programs it's talking about discussing the initial findings of the big survey there's been a change of plan.
"So what I'll discuss today is the data that we have gathered in the big survey. So primarily the sample, the context, and the survey instruments.
"I'm going to talk about what we - as in myself and Action For M.E - are going to do with the data.
"I'm going to talk about what you might want to do and might be able to do with the data.
"But primarily I'm going to try and get through this as quickly as possible because I want to make it as interactive as it can be to ask you, really:
"how we utilize this data set to create the most benefit for researchers and for people living with M.E."
----------
Katharine Cheston presented this introduction to researchers. She asked them what they need highlighted, how, now, to open the way for more research funds.
Action for M.E also seeks direction on what to highlight from its Big Survey to help fill the research gap.
Researchers may see what funders need to know matters. I too would like to know what researchers may signpost that needs emphasising by surveys to help warrant their funding applications. Maybe on this thread or another thread.
I cannot forget that one potential funder of paediatric Long Covid research told Danny Altmann (researcher) "why" that research doesn't matter.
bicentennial
Senior Member (Voting Rights)
More YouTube transcript:
At 7 minutes, 32 seconds, K.A. Cheston introduces the big questions:
"So we are currently preparing - sort of working out - what we should prioritize in terms of publications and other activities. So this is really what I would like to ask you.
"So, I mean, I have - as many of you.. I have been in this sort of dystopian world for I think almost two decades now.
"And, you know, I realize that I haven't shared the findings, but just speaking from personal experience, when I've been analysing both the quantitative and the qualitative data I have been shocked and appalled, and sometimes heartbroken, but I've never been surprised.
"You know this is just illustrating the impacts that we know on this scale. And you know it's very current data. [snorts] So"
At 8 minutes, 22 seconds, K.A Cheston puts the big questions to the researchers:
"in terms of building the infrastructure and creating the environment in which hopefully many more of your research projects might be funded, and really illustrating the impact and conveying this narrative on a more public level, you know what would be useful for you.
"What would you want to cite in terms of illustrating the impact of M.E in funding applications potentially in publications in other areas?
"Is there anything that you would like to communicate about M.E that you haven't been able to?
"Could we fill those gaps?
"What would you like to see?
"And more broadly, I guess, what questions would you ask of this data set?
"Can you see any opportunities for collaboration, co-authorship, anything like that?
"So, I'd love to hear your thoughts now, and please also do get in touch on the email address there."
[Applause]
At 9 minutes 17 seconds, people replied...
At 7 minutes, 32 seconds, K.A. Cheston introduces the big questions:
"So we are currently preparing - sort of working out - what we should prioritize in terms of publications and other activities. So this is really what I would like to ask you.
"So, I mean, I have - as many of you.. I have been in this sort of dystopian world for I think almost two decades now.
"And, you know, I realize that I haven't shared the findings, but just speaking from personal experience, when I've been analysing both the quantitative and the qualitative data I have been shocked and appalled, and sometimes heartbroken, but I've never been surprised.
"You know this is just illustrating the impacts that we know on this scale. And you know it's very current data. [snorts] So"
At 8 minutes, 22 seconds, K.A Cheston puts the big questions to the researchers:
"in terms of building the infrastructure and creating the environment in which hopefully many more of your research projects might be funded, and really illustrating the impact and conveying this narrative on a more public level, you know what would be useful for you.
"What would you want to cite in terms of illustrating the impact of M.E in funding applications potentially in publications in other areas?
"Is there anything that you would like to communicate about M.E that you haven't been able to?
"Could we fill those gaps?
"What would you like to see?
"And more broadly, I guess, what questions would you ask of this data set?
"Can you see any opportunities for collaboration, co-authorship, anything like that?
"So, I'd love to hear your thoughts now, and please also do get in touch on the email address there."
[Applause]
At 9 minutes 17 seconds, people replied...
Andy
Senior Member (Voting rights)
Sonya using her time advocating for government and wider society to adopt a different economic model seems way outside of her role, and consequently seems a waste of her time to me.
The BIg Survey records testimony to the effective abandonment of pwMECFS by the establishment, the terrible 'care' that some receive, and the desperate circumstances that many find themselves in. For many, including me, that can be hard to read about or see in a presentation even when the results are of no real surprise.
You might want to link to your source material, to help anybody trying to follow long with your posts.
I've spent some time trawling through UK parliamentary published briefings, science committee reports and written evidence, the 10 year NHS plan, national genomics websites and blogs.
I'm now in the slow process of trying to develop an argument, using these resources and the ME/CFS Final Delivery Plan, hopefully demonstrating using their own words, how and why, failure to fully fund SequenceME is discriminatory, a departure from the NHS 10 year plan (published 3 July 2025) which again will leave this patient group behind, thereby compounding existing ongoing health inequality and harms.
I propose that it takes the form of a formal complaint to DHSC under the delivery plan, which demonstrates a failure of govt policy and "legitimate expectation" flowing from the public consultation.
This Big Survey will be extremely useful to that end so looking forward to reading it.
bicentennial
Senior Member (Voting Rights)
Ok, agreed, she has plenty enough to do. Anyway, I have no economic model in sight for this essential re-distribution of service across a failing economy. Her personal advocacy has been stupendous.
Ah, I see, thankyou for the answer. I misunderstood. I half-expected the "challenge" might be some upcoming controversy within the community, to be prepared for, sorry.
Yes, as Katharine Cheston said too - from personal experience although not yet presenting the data - she was "shocked, appalled and sometimes heart-broken, but never surprised".
Thankyou. The source material was YouTube's transcript of the video with Katharine Cheston consulting researchers on the Big Survey. It is in post 35 on page 2, posted by forestglip, and I embed it below too.
Here is the embedded video:
The attachment at the end of this post is part 1 of this video's transcript, in a Word file. The file is called:
"Part 1. KA Cheston consulting researchers. Ongoing participation"
This transcript is probably automated by YouTube. It was 4 pages but is now spaced out into 6 pages. The 6th page is copied below, giving the first reply, because it is about ongoing participation:
-----------------------
9:28
1st reply:
"Hey, thanks Katherine. That was great.
"I'm wondering at this moment in time how much interaction you have directly with the PPI group, because sitting here, watching that presentation, you could see suggestions coming up from the various people who were watching.
"And I think they now have a forum to begin to interact with each other and compare notes about the various different ways that their experience might not have been included in diagnosis or understanding of what's happening at the individual level.
"So that would be a, I think, bullet point two and three could probably be augmented by really direct interaction with them and maybe incorporating some of that input into a more advanced survey, sub-survey."
K. A. Cheston:
"Yes, lovely. Thank you very much. So yes, we have ongoing work with our PPI group.
"I think often there's perhaps a bit of a balance to be had as a researcher in terms of how, you know, how you can conduct PPI at scale um and whether you can do that, and whether you have the funding and capacity to do that and how that works.
"But we will certainly look into other ways that we can involve the broader M.E community as we did in some ways when we were developing the survey instrument.
"So thank you. That's a really good point. Thanks for raising it."
------------------------------
It sounds to me like the highly-desired "patient-participation" could go a lot further if self-organised, because working researchers are still too short of funding and facilitation for it. Also it seems that Action for M.E and Katharine Cheston are starting to engage in "researcher participation".
Participation is detailed more in another video from Day 2 of the Prime Symposium: Day 2 - Sian Leary - PRIME PPI Research Involvement Hub:
Word File:
Part 1. KA Cheston consulting researchers. Ongoing participation:
Last edited:
bicentennial
Senior Member (Voting Rights)
Part 2 of the consultation video above
- researchers say what data helps research get funded:
Index
2.
What service do the illest people want, find useful and accessible?
3.
Funders tolerate more data on economic impacts, less on suffering
4A.
PPI input needed for ethics board advice, in general
4B.
Better diagnostic definition researchers can then rollout
5.
Economic profile for political questions to put political pressure on funding
6.
Benefit of investing in care & research, completes economic/ethical argument
- Danny adds his research showing loss of work and personal costs of illness
7.
Carers losing jobs - another econmic argument
8.
PPI to engage the public, eg by science and art collaborating, not sidelined
- researchers say what data helps research get funded:
Index
2.
What service do the illest people want, find useful and accessible?
3.
Funders tolerate more data on economic impacts, less on suffering
4A.
PPI input needed for ethics board advice, in general
4B.
Better diagnostic definition researchers can then rollout
5.
Economic profile for political questions to put political pressure on funding
6.
Benefit of investing in care & research, completes economic/ethical argument
- Danny adds his research showing loss of work and personal costs of illness
7.
Carers losing jobs - another econmic argument
8.
PPI to engage the public, eg by science and art collaborating, not sidelined
bicentennial
Senior Member (Voting Rights)
Part 2 of the consultation video above
- researchers say what data helps research get funded:
Transcript
------------------------
2. What service do the illest people want, find useful and accessible?
------------------------
11:00
Hi, I'm Caroline Liry, Chair of Forward ME. One of the things that ForwardMe - which is an umbrella body of all the main charities - is currently doing, is holding the government to account for the actions in their somewhat underwhelming delivery plan, final delivery plan.
One of those actions is to develop a specialised service
or
to look at developing a specialised service for people who are very severely affected.
What I've got is a huge amount of understanding of what's wrong. What I haven't got is a huge amount of understanding of what people who are very severely affected would most want from a service.
And I'd be incredibly grateful if you could trawl all the feedback, all the data that you've got to see if there is anything that that actually helps us understand what people who are very severely affected would most want or would most find useful and accessible.
Katharine Cheston:
Yes, absolutely. That's a really good question and yes, very happy to discuss this further with you.
------------------
3. Funders tolerate more data on economic impacts, less on suffering
------------------
12:11
Can I just ask, does the survey have the wherewithal to say much about kind of economic and health economics impacts? Because I guess just you know - from my interactions with policy makers and APPGs and things - there's limited tolerance to hear about human misery or human suffering at all, but quite a lot of tolerance to hear about economic impacts. So you know we need we need that data set.
Katharine Cheston:
Yes thank you. I'm really glad that you raised that. This is a piece of work that we are doing at the moment. I have also previously had frustrations with illustrating the economic impact of M.E and funding applications. So I can very much empathise. And yes, that really adds weight to this being a key out-put. So yes, we we have scope to do that. We're working out how to do that. But yes, that's something we're prioritising. Thank you.
---------------
4A. PPI input needed for ethics board advice, in general
---------------
12:56
Two questions.
Did you have PPI representative at the ethics advisory board?
So the, we put this through the ethics committee, through the department that I was in at the time which was sociology at Durham. So we had ethics no at the actual discussion at the actual presentation of the project to the ethics. So it was done via an online discussion, but was there a PPI representative and in what we, what I put forward to the ethics committee we had PPI involved in that process? Was there somebody personally there? No. So it was done via an online form. And what I fed in, was fed, was PPI fed into that.
Yes. One of my concerns about ethics advisory boards generally is that the only fun they have is to say no.
Yes.
And therefore the patients perspective is much much more important than the ethics advisory unless, unless they, unless they have patient input. In Genomics England for instance we had every single project, we had the ethics advisory person presenting to the
So is this a question regarding Durham University's ethics procedure?
It's a general, it's a general question. Here's a specific example of an ethics advisory committee which went well, but it's it's a more general concern about ethics committees not, not allowing us to do things that patients would actually like to do.
-------------
4B. Better diagnostic definition, researchers can then rollout
-------------
I have one other question.
Does your data help with the question of diagnosis? Because diagnosis remains a major issue and I wondered if in your survey there was something we could say well, here's a better definition that we can now help to roll out.
Yes. So I think that's a really interesting question. So in terms of the questions that we asked - and I'm happy to share the survey instruments with anyone who'd like to see it - we asked whether someone had received a diagnosis, whether someone suspected having a diagnosis. We ask the the general sort of demographic and information questions, but obviously - as I mentioned - we have 750,000 words of qualitative data so there are huge amounts of questions that we could ask in terms of symptoms. Obviously it relies on someone having volunteered that information, but I think there's a lot to find out there, if there are questions that people want to ask.
Sorry, if I understand your answer is we have the data but we haven't yet analysed it. Is that right?
So we have done a substantial amount of analysis of this data but obviously there is, I am one person. And this is a huge data set. So yes.
---------------------
5. Economic profile for political questions to put political pressure on funding
---------------------
My question was uh gazed by Danny's, pretty much, but the economic picture I would like to see would be one that addresses the political questions. primarily to put political pressure on on funding. Mhm.
15:46
So address things like - not just the personal impact, and losses in income, but also the societal losses of income and the losses of tax revenue.
Yes. So the whole scope essentially as much as possible would be fantastic to see. Thank you.
16:12
I think we just say who you are when you ask. Chris.
---------------------
6. Benefit of investing in care & research, completes economic/ethical argument
- - Danny adds his research showing loss of work and personal costs of illness
---------------------
Chris Ponting.
Do you have any information about - not just the costs which the government have been, they known about the billions that have cost this country, as well as the personal costs - but the benefits of investing. So the ethical argument hasn't been won. I don't think the economic argument will be won on cost alone because it's been given for... So is there any data that you might have about the benefit of investing in care and research?
Katharine Cheston:
Yeah, that's a really good perspective to have in mind. Thank you. Yes, this is part of the discussions that we're that we're having around economic cost and there's another - sorry Danny, did you did you want to say something
Danny:
Just wanted to add, to respond to that, we have some data on people's work situation that I think is very powerful showing that I think it was 75% of people who uh are not in full-time employment, and I think the qualitative data also shows that the impacts, and we have also information about M.E’s impact on people's finances.
So the extra costs that are - for example - involved in having to buy medication, or for care etc. So I think all of that will provide a good economic argument.
--------------------
7. Carers lose jobs - another econmic argument
--------------------
Just a quick one on the economic argument as well. Have carers’ experience being captured in that as well? Carers who've had to kind of leave jobs and been impacted?
18:17
Yes. So we gather data around whether a family member or friend had had to stop or reduce paid work outside the home. So that's quite powerful figures and we're still looking into the quality of data to augment that in what we're doing. Thank you.
------------------
8. PPI to engage the public, eg by science and art collaborating, not sidelined
------------------
eg I had a question that's kind of the other side of of PPI. And, I know, this isn't meant to make any statement about the patient engagement side of things, which I think is super important. But I'm curious about efforts on the public engagement side as well, and how this could tie in or does tie into work on, you know, doing like, you know, collaborations with scientists and artists.
Or like working on projects that are meant to engage the broader public in the work. And how the patients might be able to engage in some of that as well.
Because I feel like often times those efforts are also sidelined in the development and progression of research projects. And I'm kind of, yes, I'm just wondering if that's something tthat you all are thinking about more and what that role might have.
19:14
Katharine Cheston:
That's a really good thought. Thank you. Yes, I agree that that isn't something that is given as much weight. But yes, absolutely. Gilman, think about how that might work. Thank you.
I think we're just about out of time.
19:28
So Katherine, thank you so much. This is clearly a very important area. lots of discussion points. I know there'll be lots of comments and questions online as well. So, we'll ensure we'll capture those and feed that back to you. And let's have that, keep that discussion going. So, just for now, thank you very much, Katherine. [applause]
- researchers say what data helps research get funded:
Transcript
------------------------
2. What service do the illest people want, find useful and accessible?
------------------------
11:00
Hi, I'm Caroline Liry, Chair of Forward ME. One of the things that ForwardMe - which is an umbrella body of all the main charities - is currently doing, is holding the government to account for the actions in their somewhat underwhelming delivery plan, final delivery plan.
One of those actions is to develop a specialised service
or
to look at developing a specialised service for people who are very severely affected.
What I've got is a huge amount of understanding of what's wrong. What I haven't got is a huge amount of understanding of what people who are very severely affected would most want from a service.
And I'd be incredibly grateful if you could trawl all the feedback, all the data that you've got to see if there is anything that that actually helps us understand what people who are very severely affected would most want or would most find useful and accessible.
Katharine Cheston:
Yes, absolutely. That's a really good question and yes, very happy to discuss this further with you.
------------------
3. Funders tolerate more data on economic impacts, less on suffering
------------------
12:11
Can I just ask, does the survey have the wherewithal to say much about kind of economic and health economics impacts? Because I guess just you know - from my interactions with policy makers and APPGs and things - there's limited tolerance to hear about human misery or human suffering at all, but quite a lot of tolerance to hear about economic impacts. So you know we need we need that data set.
Katharine Cheston:
Yes thank you. I'm really glad that you raised that. This is a piece of work that we are doing at the moment. I have also previously had frustrations with illustrating the economic impact of M.E and funding applications. So I can very much empathise. And yes, that really adds weight to this being a key out-put. So yes, we we have scope to do that. We're working out how to do that. But yes, that's something we're prioritising. Thank you.
---------------
4A. PPI input needed for ethics board advice, in general
---------------
12:56
Two questions.
Did you have PPI representative at the ethics advisory board?
So the, we put this through the ethics committee, through the department that I was in at the time which was sociology at Durham. So we had ethics no at the actual discussion at the actual presentation of the project to the ethics. So it was done via an online discussion, but was there a PPI representative and in what we, what I put forward to the ethics committee we had PPI involved in that process? Was there somebody personally there? No. So it was done via an online form. And what I fed in, was fed, was PPI fed into that.
Yes. One of my concerns about ethics advisory boards generally is that the only fun they have is to say no.
Yes.
And therefore the patients perspective is much much more important than the ethics advisory unless, unless they, unless they have patient input. In Genomics England for instance we had every single project, we had the ethics advisory person presenting to the
So is this a question regarding Durham University's ethics procedure?
It's a general, it's a general question. Here's a specific example of an ethics advisory committee which went well, but it's it's a more general concern about ethics committees not, not allowing us to do things that patients would actually like to do.
-------------
4B. Better diagnostic definition, researchers can then rollout
-------------
I have one other question.
Does your data help with the question of diagnosis? Because diagnosis remains a major issue and I wondered if in your survey there was something we could say well, here's a better definition that we can now help to roll out.
Yes. So I think that's a really interesting question. So in terms of the questions that we asked - and I'm happy to share the survey instruments with anyone who'd like to see it - we asked whether someone had received a diagnosis, whether someone suspected having a diagnosis. We ask the the general sort of demographic and information questions, but obviously - as I mentioned - we have 750,000 words of qualitative data so there are huge amounts of questions that we could ask in terms of symptoms. Obviously it relies on someone having volunteered that information, but I think there's a lot to find out there, if there are questions that people want to ask.
Sorry, if I understand your answer is we have the data but we haven't yet analysed it. Is that right?
So we have done a substantial amount of analysis of this data but obviously there is, I am one person. And this is a huge data set. So yes.
---------------------
5. Economic profile for political questions to put political pressure on funding
---------------------
My question was uh gazed by Danny's, pretty much, but the economic picture I would like to see would be one that addresses the political questions. primarily to put political pressure on on funding. Mhm.
15:46
So address things like - not just the personal impact, and losses in income, but also the societal losses of income and the losses of tax revenue.
Yes. So the whole scope essentially as much as possible would be fantastic to see. Thank you.
16:12
I think we just say who you are when you ask. Chris.
---------------------
6. Benefit of investing in care & research, completes economic/ethical argument
- - Danny adds his research showing loss of work and personal costs of illness
---------------------
Chris Ponting.
Do you have any information about - not just the costs which the government have been, they known about the billions that have cost this country, as well as the personal costs - but the benefits of investing. So the ethical argument hasn't been won. I don't think the economic argument will be won on cost alone because it's been given for... So is there any data that you might have about the benefit of investing in care and research?
Katharine Cheston:
Yeah, that's a really good perspective to have in mind. Thank you. Yes, this is part of the discussions that we're that we're having around economic cost and there's another - sorry Danny, did you did you want to say something
Danny:
Just wanted to add, to respond to that, we have some data on people's work situation that I think is very powerful showing that I think it was 75% of people who uh are not in full-time employment, and I think the qualitative data also shows that the impacts, and we have also information about M.E’s impact on people's finances.
So the extra costs that are - for example - involved in having to buy medication, or for care etc. So I think all of that will provide a good economic argument.
--------------------
7. Carers lose jobs - another econmic argument
--------------------
Just a quick one on the economic argument as well. Have carers’ experience being captured in that as well? Carers who've had to kind of leave jobs and been impacted?
18:17
Yes. So we gather data around whether a family member or friend had had to stop or reduce paid work outside the home. So that's quite powerful figures and we're still looking into the quality of data to augment that in what we're doing. Thank you.
------------------
8. PPI to engage the public, eg by science and art collaborating, not sidelined
------------------
eg I had a question that's kind of the other side of of PPI. And, I know, this isn't meant to make any statement about the patient engagement side of things, which I think is super important. But I'm curious about efforts on the public engagement side as well, and how this could tie in or does tie into work on, you know, doing like, you know, collaborations with scientists and artists.
Or like working on projects that are meant to engage the broader public in the work. And how the patients might be able to engage in some of that as well.
Because I feel like often times those efforts are also sidelined in the development and progression of research projects. And I'm kind of, yes, I'm just wondering if that's something tthat you all are thinking about more and what that role might have.
19:14
Katharine Cheston:
That's a really good thought. Thank you. Yes, I agree that that isn't something that is given as much weight. But yes, absolutely. Gilman, think about how that might work. Thank you.
I think we're just about out of time.
19:28
So Katherine, thank you so much. This is clearly a very important area. lots of discussion points. I know there'll be lots of comments and questions online as well. So, we'll ensure we'll capture those and feed that back to you. And let's have that, keep that discussion going. So, just for now, thank you very much, Katherine. [applause]
bicentennial
Senior Member (Voting Rights)
I think the Science Museum might help a lot put a display together for the person who proposed engaging the public eg with art and science. And there may be a medical museum interested. Many museums do displays.