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Hello all, Just a quick note to say that the Big Survey closes tonight, at 23.59. Please note that responses will only be counted if you've gone to the end of the survey and pressed 'submit'. Link to the Big Survey (adults): https://durhambs.az1.qualtrics.com/jfe/form/SV_1OdW11dDLmKnKxE...

I'm returning to this thread purely because it discusses my work on the Big Survey (as I outlined in my previous message). I'll engage with those aspects of the discussion, below. @Hutan you quote this from a previous thread: "I have had ME/CFS for over two decades, and followed events closely...

I wanted to respond, again, with a point of fact. Have you read many editorials for special issues, @Hutan? I'm sure many members of this forum are familiar with the format, but for those who are not: these editorials are written to summarise all of the papers in a special issue. They have to...

I also want to really push back against this inaccurate claim. This is categorically not what happened. I was part of these discussions; I can say this with certainty. Look at any special issue in this particular journal and you will see that there is a 'patient perspective'. They all make...

Honestly, @Hutan, I think comments like this are incredibly unhelpful - and, frankly, quite unfair - unless you can also detail precisely how you would have done both of these things, in 1200 words or less, making reference to no more than 10 articles.

Thanks, @ScoutB! I do totally agree with your first paragraph. There's emotional labour involved in counteracting these narratives for sure. Typically, no, academics will search for an article and read that independently of the others in the issue. Also, for absolute clarity - I was not...

Sorry, when I wrote 'I'm making claims...' I was referring to the hypothetical claims I could have made (but didn't) re: allusions to psychologisation. But your point still stands re: how ill these populations are. I think what you say is true for a subset of clinicians, absolutely (perhaps...

Honestly, I'm a bit disappointed that I've never (and my employers have never) had one of these emails - I'd take it as a sign I'd done something right! I'm not looking for a career in academia, though, so all of this doesn't affect me in the same way it would others. I'll continue for as long...

Thank you, @StellariaGraminea - and for your earlier post, too! In response to your question, I made this part of the paper more explicit in its published version. I felt it was eminently clear in the original version I submitted, though, hence my surprise! And thank you! I'm glad I did it...

Your points about narrative and language are also really interesting - thank you, @Jonathan Edwards, this has been food for thought! In general, I'm very comfortable criticising this narrative. I wrote a whole PhD on it! It was more that I felt unable to allude to these criticisms in this short...

Thank you @Jonathan Edwards - I appreciate your comments Re: patient engagement, I can confirm that this absolutely wasn’t what happened – although, I can see from the special issue itself and what was discussed here why you might come to this conclusion. It’s absolutely true, for example, that...

In response to this post in particular, might I ask a question? How do you expect to critique this narrative, if you don’t use this language? How do you have even an iota of a chance of changing hearts and minds if you refuse to engage with people, using the terms with which they (rightly or...

Yes, these sorts of suggestions are typical at the point of peer review. These are suggestions made at the point of the text, not at the point of framing the article. I was open to the former (you have to be, this is absolutely part of the process of publishing an article); I would not have been...

I just wanted to clear up a few points of fact: The article was not commissioned. It was an invited submission. This meant that I was asked if I wanted to write the 'patient perspective' (which, as I explained in another comment, is a specific type of article FHJ include in all issues) and I...

No one laughed at this. I would never position quotes from the people I interviewed - people I deeply care about, whose testimony I feel incredibly privileged to be entrusted and to work with - so that they could be laughed at. Perhaps this is not what you meant - but I find this insinuation...

Honestly? It doesn't - and didn't - feel nice, in the slightest. I have very good reasons for not saying more, on this forum. I'm sorry that I can't, and I recognise that this evokes suspicion, 'major alarm bells', etc. I'm not misguided, I'm not ill-informed, and I'm well aware of all the...

I think this is incredibly unlikely to be the case, and more likely to be e.g., the browser you're accessing it from. I tried on a private browser (i.e., logged out from my institutional account) and it worked fine. Thanks, Trish. This was certainly what I was trying to do, and why I took up...

Sorry, you'll see I made an edit, to clarify what I meant. It now reads: 'as far as I am aware this work (at least, what I witnessed/was part of) had absolutely nothing to do with 'a disastrous plan for ME/CFS and no meaningful care'.' By 'this work', I meant the series of meetings that I attended.

They were about 'enduring symptoms' (i.e., 'medically unexplained symptoms'), a category into which - as we all know - ME/CFS is often pulled. ME/CFS was not the subject of the meetings, though. The meetings weren't confidential. They also weren't primarily discussions about ill people - by...

That is odd! From the link included in the OP, I then clicked on 'Volume 12, Issue 4' (below 'Future Healthcare Journal', at the top) and on that page I can see the list with the article numbers I included above