UK Action for ME Big Survey 2025 - closes 27/1/26 (UK residents only)

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Trish

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UK Action for ME Big Survey 2025

Quoted from the Action for ME website:
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Our 2025 Big Survey is now open

The survey will close at 11.59pm on Tuesday 27 January 2026. Please make sure that you have finished the survey and submitted your responses before this date.

We have two separate surveys: one for people aged 18 (Adults) and over and one for people aged 17 and under (Young people).

Thank you for taking the time and energy to support this vital research.

Adult's survey
Young people's survey

What is the Big Survey?
Every 5 years, we develop our Big Survey. It enables us to gather large amounts of data which can then be analysed and used to support our wider work and illustrate the impact of ME.

Our last Big Survey was completed by over 4,000 children, young people, and adults, in 2019.

The 2025 Big Survey is a collaboration between Action for ME and the Discovery Research Platform for Medical Humanities at the Institute for Medical Humanities (IMH), Durham University. Postdoctoral researcher, Dr Katherine Cheston, is working with us to help support the survey's development, data collection, and subsequent analysis.

You can find out more information about the Discovery Research Platform for Medical Humanities at the IMH, and Dr Cheston's involvement further down on this page.


Who can complete the Big Survey?
The Big Survey is open to people living in the UK with ME, whether or not they have a diagnosis.

It is also open to people living in the UK with long Covid and who experience ME symptoms, even if they don't have a diagnosis.

If you are unable to complete the survey yourself, a carer is welcome to fill it out on your behalf.

What will you use this data for?
The views and experiences of people affected by ME crucial to our work and are regularly used to support our awareness raising and influencing policy, service development, and research.

However, it is also essential that we keep this data up-to-date to account any recent research developments, changes in service provision, and policy changes, and how they impact the lives of people with by ME.

Responses will be anonymised to be used by Action for ME, and our research collaborators, in their work. They will also be shared with Dr Audrey Ryback, University of Edinburgh, who will use the data to study the age of ME onset, triggers, and heritability.

For more information, please visit the FAQs section below.
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End of quote. More at link.
 
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Some quotes from the introduction to the survey:

Action for ME's Big Survey, 2025

Action for ME runs their Big Survey every five years, and the data produced informs all aspects of the charity’s work to improve the lives of people with ME. The aim of the 2025 Big Survey is to illustrate the impact of ME. This year, the survey is being produced in collaboration with Durham University’s Institute for Medical Humanities, and postdoctoral researcher Dr Katharine Cheston will work with Action for ME’s research team to analyse the survey data.

This survey is for adults in the UK who live with ME or who live with Long Covid and experience ME symptoms (debilitating fatigue, post-exertional malaise, sleep disturbance, cognitive difficulties), whether or not they have a diagnosis of ME. If you have severe or very severe ME and are unable to fill out the survey, a carer is welcome to fill it out on your behalf. If this is not possible, we may be able to provide telephone support. This would involve completing the survey with a member of our team, over the phone. To arrange this, please email research@actionforme.org.uk or phone 07548 558 921 and we will get back to you as soon as we can. If you are a child or young person (aged 17 and under), we have a separate version of the Big Survey for Children and Young People.

The survey has 46 questions, but not all may apply to you.

Every question on this survey is optional.... Please note that the survey asks about topics, such as experiences of healthcare, that may be upsetting. We have a PDF version of the survey available on our website, if you would like to read through the survey in advance.

You can exit the survey and come back to it later.

By completing the survey, you are giving your consent for your anonymised responses to be used by Action for ME, and their research collaborators, in their work.

for more information on how we handle your personal data. If you have any questions about the Big Survey, please see our list of Frequently Asked Questions.

The deadline for completing the survey is 27 January 2026.

For more details go to the survey.
 
I can’t answer because I’m not a UK resident, but I noticed that the survey doesn’t start by asking if you’re answer yourself or for someone that are unable to do it themselves (primarily the more severe patients).

The survey looks good overall and asks many relevant questions for advocacy purposes. The wording appears neutral and would be difficult to dismiss as leading. I think this will be helpful.

A couple of quick notes:
Q12: Ideally the description of PEM would include a loss of ability to function. That is often the worst part as someone on the more severe end of the scale. I can deal with the symptoms, but any loss of function requires others to do it for me if I’m to survive.

For the last questions about the AfME newsletter I think it would have been better to redirect the participants to another webpage where they could sign up. I would have concerns about leaving my name with my response. It looks like it’s possible to customise the end of survey message:

Editing the End of the Survey

www.qualtrics.com www.qualtrics.com
 
It is indeed a big survey. But we have plenty of time to complete it and can save our progress. There’s also a version to print and they seem to be offeribg some phone support for people who need it. They were also great at engaging earlier on in the design process. Lots of positives here, well done AfME.

Agree with @Utsikt that maybe a couple of bits around PEM could have been phrased differently/better and the severity levels too perhaps. But overall what I’ve seen from skimming through looks good for the aims here.

I will definitely be spending some time and energy on this. It should provide a strong body of evidence of patient experiences for advocacy work around services.
 
Utsikt said:
I noticed that the survey doesn’t start by asking if you’re answer yourself or for someone that are unable to do it themselves (primarily the more severe patients).
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I can't swear to it, because it was yesterday and most of what happened is now a mystery, but I've half a memory the online version does ask that. Someone else may be able to confirm (it's possible I'm thinking of something else).
 
Kitty said:
I can't swear to it, because it was yesterday and most of what happened is now a mystery, but I've half a memory the online version does ask that. Someone else may be able to confirm (it's possible I'm thinking of something else).
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I’m not sure they do. I’m also not sure if it matters for the goals?

This is in their FAQ

I have severe ME and cannot complete the survey myself. Can a family member fill it out for me?

Yes, absolutely. If you are unable to fill out the survey, a friend, family member or carer is welcome to fill it out on your behalf.

If this is not possible, we may be able to provide telephone support. This would involve completing the survey with a member of our team, over the phone. To arrange this, please email research@actionforme.org.uk or phone 07548 558 921 and we will get back to you as soon as we can.
Click to expand...
 
Like others i found the severity categories difficult to navigate.
Was there a reason housebound wasn't captured but bedbound was?
I feel like the upper part of the severe category is pretty invisible here, as it is in the England final DP action points too.
Otherwise I liked the survey and in particular section on the nhs experience
 
Kiristar said:
Like others i found the severity categories difficult to navigate.
Was there a reason housebound wasn't captured but bedbound was?
Click to expand...

I think it's just generally difficult to get it right, I straddle two categories.

Looking at it from the point of view of advocacy, it's probably enough for them to be able to quote the numbers of people in each of the broad categories. It's unlikely they'd be discussing the spectrum of disability each encompasses, as detail tends to dilute messages and it doesn't get reported anyway. You could put forward an argument that all severely ill people should be able to access NHS vaccination and screening programmes at home, for instance, without needing to go into the nuance.
 
Regarding the severity levels used in this survey, they are taken from the NICE guidelines. I, and the other members of the PPI group for this project, did discuss which should be used, and came to the conclusion that no scale is perfect, and that it is better overall to use the scale that is part of the current NICE guidelines. DecodeME also used the NICE scale, making both data sets more easily comparable (if needed).

Apart from that, it's nice to see a generally positive reaction to it, given that regular surveys like this are important in order to record, at a population level, the experiences of our community.
 
Andy said:
Regarding the severity levels used in this survey, they are taken from the NICE guidelines. I, and the other members of the PPI group for this project, did discuss which should be used, and came to the conclusion that no scale is perfect, and that it is better overall to use the scale that is part of the current NICE guidelines. DecodeME also used the NICE scale, making both data sets more easily comparable (if needed).

Apart from that, it's nice to see a generally positive reaction to it, given that regular surveys like this are important in order to record, at a population level, the experiences of our community.
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I do understand nothings perfect. But It's just difficult coming on top of the bizarre way the upper severe level was completely ignored and overlooked in the Final Delivery Plan, particularly wrt health service provision and in the nhs eModules, which I imagine couldn't have been anticipated. (I appreciate those are far from it's only flaws, and focus rightly needs to go on very severe patients first)

It's just people don't cater for what you don't measure, so greater clarity on the comparative size of that specific segment would have been helpful.
 
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Kiristar said:
I do understand nothings perfect. But It's just difficult coming on top of the bizarre way the upper severe level was completely ignored and overlooked in the Final Delivery Plan, particularly wrt health service provision and in the nhs eModules, which I imagine couldn't have been anticipated. (I appreciate those are far from it's only flaws, and focus rightly needs to go on very severe patients first)

It's just people don't cater for what you don't measure, so greater clarity on the comparative size of that specific segment would have been helpful.
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I'm really sorry but I'm confused whether your issue here is with the Final Delivery Plan or the survey. The survey gives the option of all four severity levels in the NICE Guidelines scale, so the upper severe level will be recorded so that we can get an idea of how many patients are in that level.
 
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