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I'm not going to talk about it on a public forum because, to me, that seems completely inappropriate and unprofessional - and unfair. These were a series of meetings with a small group of people. I didn't take minutes, or recordings (obviously), so anything I were to say about the content of...

Thank you so much, @Trish. You make a good point about the terminology - I'm afraid I don't know where it came from, but I too was intrigued (especially as I'd not seen this term used elsewhere). The interviews were those I conducted as part of my PhD. Two of these interviews are discussed in...

Thanks @Hutan - and yes, I do hope so. I certainly felt as though I was able to make some valuable contributions, that wouldn't have been brought to the table otherwise. That's odd - when I click through to this issue (Vol 12, Issue 4), I can see other papers associated with this scoping...

Hello, I’m the author of this article and spotted I had a notification for this thread. Perhaps as a bit of useful context, this was an invited article, as part of a special issue. This journal (apparently) always has at least one ‘patient perspective’ article per issue, which is what this is...

Hello - I just wanted to write a quick reminder that Action for ME's Big Survey is still open (until 27 January). I'm working with Action for ME on the Big Survey and happy to answer any questions, either via the forum or via email (katharine.cheston@durham.ac.uk). Thanks!

Hi @Kiristar Thank you so much for pointing this out. I’m really grateful you mentioned it. I will absolutely do this from now on!

I'm referring here to the policy documents at the National Archives, in which humanities and social science researchers feature (at times prominently). Personally I think the impact on UK policy could well have been significant, at a high level. "Health care needs to be based on testing ideas...

I actually think there's huge potential in these methodologies to implement changes in health research cultures - and also to illuminate what illnesses, like ME, actually feel like. Current descriptions (e.g., 'debilitating fatigue') don't come close, I think. Ditto to addressing the social...

(Sorry, I can't work out how to quote...) @Utsikt - I'm up to my eyeballs in an application, so apologies for the short reply! - but: "I don’t think the humanities are needed for getting an understanding of ME/CFS" Historians, literary scholars and anthropologists played a central role in...

Hi @Kiristar - I hope you don't mind me sending you a message! I just wanted to acknowledge your feedback and say thank you. I also wanted to say that we will aim to really get into this granularity with qualitative analysis of the free text responses. Obviously this will be secondary to the...

Hi @Andy and @Trish - thanks for your comments on the article! The piece was addressing those in my field and presenting a positive vision of what the field can be and can do, and the role it should play. There wasn't space to include critiques of previous work here - but rest assured that this...

Nail on head here - and indeed one of the central threads of my PhD thesis (submitting soon). I hear you, and I know this to be true - experientially, as well as empirically. I also really do hear your points about subtlety. Bringing such a cutting, activist critique (as I have done e.g., in...

Hi @LouBLou, thank you for your comment. The Showalter book remains deeply troubling - and an example to us all of how not to conduct this kind of research. This was how I framed this text in a recent conference presentation (at the Northern Network for Medical Humanities Research Congress...

Thank you, @Trish, for these comments. I really appreciate hearing your views (and, indeed, discussions on a previous thread on this site were instrumental in shaping how I frame my research in public fora - particularly in abstracts!) I do see your points about the conclusion. The critique is...

Hello, I'm the lead author of this paper, and thought I'd drop in and engage with any comments or questions about this piece. (I've done this before, and thought it was productive - but please do say if I should limit my engagement here to that of someone with experience/interest, rather than as...

Absolutely! It seems to me that all of this reveals something really rotten at the heart of the way we do research. That's really what I'm trying to change - in some small way, at least!

Thanks for your comment, Trish, and excellent points. I hope that much of what you say can come out in this research; the conclusion currently turns the shame question on the academic community, asking why aren't we (as academics) deeply ashamed? Why have we allowed this to continue for so long...

I have come to a similar conclusion, through different avenues - and my question would be: how do we stop the empty vessels? How do we silence them, or talk over them? If the problem looks too difficult, then shouldn't we at least try to change the system? I don't think that researching shame...

I completely, wholeheartedly agree that the problem is not how pwME (or pw"MUS") are feeling - it is that they are still ill. I guess, at it's heart, I want to know *why* this is - why there has been so little progress, such appalling little interest, why the academic community has tolerated...

Sorry to resurrect this thread - I’ve only just come across it, while doing the final edits on the paper that came out of this workshop. (Also apologies in that I've forgotten - again! - how to reply to someone on here so that they might see this - I hoped clicking 'reply' would work!) I just...