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Long Covid and ME/CFS patients in the UK: Quick survey about healthcare experiences

18 replies

Psm92 · 13/10/2023 15:58

Hi all. Hoping you can help. I'm conducting some research to gain an understanding of the healthcare experiences of individuals living with Long Covid and ME/CFS. This understanding will be a crucial step towards exploring solutions to address the unique challenges they face. This is independent research and is not affiliated to any charity or organisation. I have a background in public policy and an interest in healthcare and technology. I have also had Long Covid since summer 2021.

If you live in the UK, have Long Covid and/or CFS, and are able to complete this survey - it should take less than 5 minutes - I would hugely appreciate it. The information gathered will remain confidential and be used solely for research purposes.

Happy to answer any questions!

Long Covid and ME/CFS: Experiences of healthcare services in the UK

Please take a few minutes to take our survey.

OP posts:
AudiobookListener · 13/10/2023 19:03

Sounds like it could be interesting and useful, but personally I would need more info before taking part. Who are you? What do you mean by independent research? Are you at uni? If so which one, which department? Who is funding you? Is this for a qualification or published paper? If so where will it be submitted? Just more background needed, sorry.

Psm92 · 13/10/2023 19:15

Hi - thanks for responding, and totally understand that you want more information. I'm a private individual with Long Covid, an interest in healthcare and tech, and a desire to make things better for people with these conditions. By "independent research", I mean that I'm not carrying this out on behalf of, or as part of, any organisation, institution, charity, or the government.

I'm not at university, no - I've been working for several years (am in my 30s). Nobody is funding me - at this stage it purely is just research for the purposes of increasing understanding and collecting data points to explore solutions i.e. what are the pain points? what can be done to improve healthcare? what bothers people most? etc.

Sorry I can't be more specific! But that's mainly because it genuinely is independent research and borne out of curiosity and a desire to change things. The survey doesn't collect any personal data, and there's a "prefer not to answer" option on the demographic questions, if that helps. Happy to answer any other questions.

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AudiobookListener · 14/10/2023 11:48

But how are you going to change things if you are just a private individual working on your own?

Psm92 · 14/10/2023 19:30

Same way others do. Funding, developing technology, advocacy, etc.

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AutumnCrow · 14/10/2023 19:50

Gender woo doesn't underpin good science-based medical research, btw. Are you with the OU?

Psm92 · 14/10/2023 19:51

@AutumnCrow I'm sorry - I'm not sure what you mean? I'm interested in long covid, ME/CFS and healthcare in the UK. I'm not affiliated with any university.

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melmonroe · 14/10/2023 19:53

I would have completed it but I don't have a gender.

Psm92 · 14/10/2023 19:55

@melmonroe There's an "other" option (assuming this is a genuine question!).

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melmonroe · 14/10/2023 20:00

It is genuine. My point being that I'm a woman. I don't need to identify with anything including 'other' what ever the fuck that is? Change that question to which sex are you (male/female/prefer not to say) rather than the myriad of options that you have.

Psm92 · 14/10/2023 20:07

@melmonroe I understand what you're saying - thank you for explaining. The questionnaire is intended to be as inclusive as possible, to ensure as many people as possible are able to participate, and to enable analysis of how these conditions affect different groups of people, including their experiences of accessing and using healthcare services. Thank you for your feedback.

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HermioneWeasley · 14/10/2023 20:09

@Psm92 i can’t complete because I don’t have a gender identity. “Other” doesn’t cover it because it implies I have one that’s not in your list.

I am also interested why you don’t want data on sex given that women experience more chronic fatigue issues.

HermioneWeasley · 14/10/2023 20:10

Well, @Psm92 your attempt to be inclusive has excluded anyone who doesn’t have a gender identity.

Psm92 · 14/10/2023 20:11

@HermioneWeasley Hi there - the question asks about gender as opposed to "gender identity" - male and female options are there.

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AudiobookListener · 14/10/2023 20:13

Psm92 · 14/10/2023 19:30

Same way others do. Funding, developing technology, advocacy, etc.

But you haven’t got any funding! I think you should get yourself a proper research job and funding before you start asking potentially vulnerable people to use their scare energy on a survey that could well lead nowhere. Maybe approach one of the ME/CFS or Long Covid charities and offer to volunteer rather than going it alone.

ChristmasKraken · 14/10/2023 20:15

Psm92 · 14/10/2023 20:11

@HermioneWeasley Hi there - the question asks about gender as opposed to "gender identity" - male and female options are there.


But the options are gender identities so.... (and also, how is "gender" different from "gender identity" in this context?) if you're not sure whether someone completing the survey is of the male or female sex, how can you draw any conclusions from it?

Psm92 · 14/10/2023 20:24

Hi @AudiobookListener - I certainly wouldn't want people to spend scarce energy filling this out if they weren't able to. I suffer from ME/CFS myself, and know how difficult it is. The research is important to me, and I hope to use my skills to explore solutions, but I would only expect those who are able to, and who would like to take part, to complete the survey. Thank you for your feedback.

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Psm92 · 14/10/2023 20:51

Hi @ChristmasKraken - thank you for your feedback. As this isn't clinical research per se (I'm not a trained scientist, nor a doctor), I'm more interested in people's experiences of - and expectations of - healthcare services, rather than biology. Of course, I appreciate that ME/CFS, Long Covid and related conditions disproportionately affect women - we know this to be true. However, biological sex (which, for the overwhelming majority of people aligns with gender) is less germane to my research than how people navigate and move through the healthcare system. I want to get a sense of how all kinds of people with Long Covid and ME/CFS - and that includes people who may not feel they fit into the male/female binary - feel about their healthcare. To this end, this was the best way of allowing for maximum participation, and is consistent with similar questions in other healthcare experience surveys and research.

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Psm92 · 01/11/2023 12:09

Thanks to all who've responded to this so far. If anyone else is able to/would like to respond, that would be great.

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