Thank you for engaging publicly Emily, I've found that anthropology as a disciple is one of the most open to dialogue and critique. I want to acknowledge that what you describe around legal pressure sounds genuinely distressing. From a historical and anthropological perspective, though, this moment is also analytically important.
Two points feel crucial. First, psychologisation has never simply meant “imagined” or “not real" or "not physical". Historically (including in hysteria - wondering wombs, animal spirits, reflex theory), mind–body integration was precisely how bodily suffering without visible pathology was contained, reinterpreted, and often delegitimised under dominant medical authority. So when critics raise concerns about psychologising, they are not asserting mind–body dualism; they are pointing to how integrated models have repeatedly functioned to manage uncertainty and dissent rather than resolve biology. This is precisely the issue of hysteria. Cleghorn writes with clarity about this.
Second, the dysregulation / threshold framework you propose operates as conjecture (like many integrated physical theories to explain hysteria have) rather than demonstrated disease mechanism for ME or ME-like Long Covid. In the UK we have clinically predominant orgs (BACME) & Drs taking this stance of dysregulation. It was and is in fact used to reframe the theory behind GET and CBT to continue to justify exercise and psychological therapies for ME and other invisible illnesses.
Anthropologically, this places it in the same category as earlier explanatory frameworks (stress, conversion, idioms of distress): meaningful, narratively coherent, but not evidentiary in the medical sense - and therefore vulnerable to being used to individualise causation and responsibility.
What’s striking is that your account of pressure from a senior, charismatic male authority demanding “balance” seems to instantiate the very power dynamics you analyse. From a Weberian perspective, this reflects charismatic authority and institutional power shaping what can be said. (and Wessely is well known for this).
From a Foucauldian lens, it is a live example of knowledge–power disciplining discourse, shaping what counts as legitimate evidence or opinion, especially when exercised by a dominant male figure. That isn’t personal failing, it’s structural, but it does help explain why patients remain wary of “both sides” framing in a field where harm has already occurred.
Whilst it is important that you can give testimony to your experience the wider implications are also important to comment on, as you were effectively silenced at a crucial moment and it is the text that will be remembered the most.
Concerning your points about what an ME advocate stated about your work it would be diligent to include (with anonymity) the first hand sources. If you could clarify the point about them saying: "What I found shocking was the comment that I argued that a FND doctor should treat ME/CFS?" As the only evidence I could see was: "Depicts FND docs as the only ones who take patient complaints seriously." (Of course I might be missing the original).
As a community we are often portrayed as mad, bonkers, troublesome and nuts, so it helps to be clear when a power/source imbalance is at play. Characterising reactions as "shocking" whilst Wessely is seen as emotive & poignant can feed the stereotype of patients being difficult and Wessely being a misunderstood hero.
For clarity on the logical traps concerning 'all in your head' this article might be useful for you? There is considerable opacity and misunderstanding to what it entails narratively and historically.
The argument of the book is that it is biological in nature--not that it's caused by trauma or psychological at all. Thank you for engaging with me - I truly appreciate your feedback.
I had a similar encounter with Wessley, who was selected as a reviewer for an article on ME/CFS I submitted to Journal of Medical Ethics. Reviewers messed with that thing for a full year! Finally we got it into a form that everyone was excited about - even Wessley - but he had raised some serious legal concerns along the way. Just when the paper was enthusiastically recommended by all reviewers, JME changed editors and the new one flatly refused to publish it. He wouldn’t admit that the legal issues worried him, so there was literally no justification. He just would not budge. It was an appalling thing to do to an author after demanding a year of work on an article. I sent it to Bioethics then, along with the comments and final refusal to publish at JME in spite of an unusual level of enthusiasm from all reviewers. They accepted it immediately, with no revisions.
The recommendations I made in that article - along with many of the wise recommendations made by the ME community in the UK - were ultimately embraced in the new NICE guideline. I have often wondered whether Wessely recommended my paper knowing that, in the end, his legal concerns would override it.
For what it’s worth, I’m guessing the world would be better off overall if you went ahead and published that silenced material. I don’t know the legal issues you’re dealing with, but the power he has over ME discourse is certainly not consistent with usual standards for peer review.
Thanks for a very thorough and clarifying text! It’s a good complement to mentioned reactions from some people within the ME/CFS-community. A community that has been treated so unacceptably since forever - it’s understandable that some are on high alert. Mostly this is of good I believe, we need different kinds of people working together to make a change. You ”responding” here on Substack hopefully makes things clearer and the community stronger.
Very well said. Not at all my impression from reading your books. It seems there can always be a price when putting work forward but that should never be cause for doubt. Politics is a part of every human endeavor unfortunately. The book is a gift to people who have suffered through this type of experience. Thank you.
I'm only partway through the book at this point, but I've read enough of it to know that those comments on blue sky are way off base. It's really frustrating when things like that can take on a life of their own on social media.
Thanks for this article, Emily, and I'm looking forward to reading the book. Had my GP not told me to 'crack on with life' when I cam to him in December 2022, and instead told me to rest, I have no doubt that I wouldn't now need to spend 23 hours per day in bed. He even said - and I remember verbatim - 'You don't want to end up like people with ME who lie around in bed all day'. What an irony...
Hello, Emily, from a fellow anthropologist (non-practicing) and Long Covid with ME/CFS sufferer. I look forward to reading your book when I recover a bit more and have the spoons to spare. This, towards the top of your article here, really caught my attention: "...several publishers said they couldn’t publish a book on Long Covid." Would you be comfortable unpacking that for us at all? Thank you!
Many just said they weren't interested in publishing a book on Long Covid. Another colleague of mine has received similar notes. That's why I shared so many stories from people I interviewed on the blog. I thought it was important to share the diverse stories and ways of experiencing the illness.
Thank you for engaging publicly Emily, I've found that anthropology as a disciple is one of the most open to dialogue and critique. I want to acknowledge that what you describe around legal pressure sounds genuinely distressing. From a historical and anthropological perspective, though, this moment is also analytically important.
Two points feel crucial. First, psychologisation has never simply meant “imagined” or “not real" or "not physical". Historically (including in hysteria - wondering wombs, animal spirits, reflex theory), mind–body integration was precisely how bodily suffering without visible pathology was contained, reinterpreted, and often delegitimised under dominant medical authority. So when critics raise concerns about psychologising, they are not asserting mind–body dualism; they are pointing to how integrated models have repeatedly functioned to manage uncertainty and dissent rather than resolve biology. This is precisely the issue of hysteria. Cleghorn writes with clarity about this.
Second, the dysregulation / threshold framework you propose operates as conjecture (like many integrated physical theories to explain hysteria have) rather than demonstrated disease mechanism for ME or ME-like Long Covid. In the UK we have clinically predominant orgs (BACME) & Drs taking this stance of dysregulation. It was and is in fact used to reframe the theory behind GET and CBT to continue to justify exercise and psychological therapies for ME and other invisible illnesses.
Anthropologically, this places it in the same category as earlier explanatory frameworks (stress, conversion, idioms of distress): meaningful, narratively coherent, but not evidentiary in the medical sense - and therefore vulnerable to being used to individualise causation and responsibility.
What’s striking is that your account of pressure from a senior, charismatic male authority demanding “balance” seems to instantiate the very power dynamics you analyse. From a Weberian perspective, this reflects charismatic authority and institutional power shaping what can be said. (and Wessely is well known for this).
From a Foucauldian lens, it is a live example of knowledge–power disciplining discourse, shaping what counts as legitimate evidence or opinion, especially when exercised by a dominant male figure. That isn’t personal failing, it’s structural, but it does help explain why patients remain wary of “both sides” framing in a field where harm has already occurred.
Whilst it is important that you can give testimony to your experience the wider implications are also important to comment on, as you were effectively silenced at a crucial moment and it is the text that will be remembered the most.
Concerning your points about what an ME advocate stated about your work it would be diligent to include (with anonymity) the first hand sources. If you could clarify the point about them saying: "What I found shocking was the comment that I argued that a FND doctor should treat ME/CFS?" As the only evidence I could see was: "Depicts FND docs as the only ones who take patient complaints seriously." (Of course I might be missing the original).
As a community we are often portrayed as mad, bonkers, troublesome and nuts, so it helps to be clear when a power/source imbalance is at play. Characterising reactions as "shocking" whilst Wessely is seen as emotive & poignant can feed the stereotype of patients being difficult and Wessely being a misunderstood hero.
For clarity on the logical traps concerning 'all in your head' this article might be useful for you? There is considerable opacity and misunderstanding to what it entails narratively and historically.
https://open.substack.com/pub/longcovidadvocacy/p/not-all-in-your-head-think-again?utm_source=share&utm_medium=android&r=1s0n2a
Very thoughtful - thank you so much for this engagement.
https://open.substack.com/pub/longcovidadvocacy/p/these-are-not-verifiable-conditions?utm_source=share&utm_medium=android&r=1s0n2a
Wonderfully said! Thank you.
The argument of the book is that it is biological in nature--not that it's caused by trauma or psychological at all. Thank you for engaging with me - I truly appreciate your feedback.
I had a similar encounter with Wessley, who was selected as a reviewer for an article on ME/CFS I submitted to Journal of Medical Ethics. Reviewers messed with that thing for a full year! Finally we got it into a form that everyone was excited about - even Wessley - but he had raised some serious legal concerns along the way. Just when the paper was enthusiastically recommended by all reviewers, JME changed editors and the new one flatly refused to publish it. He wouldn’t admit that the legal issues worried him, so there was literally no justification. He just would not budge. It was an appalling thing to do to an author after demanding a year of work on an article. I sent it to Bioethics then, along with the comments and final refusal to publish at JME in spite of an unusual level of enthusiasm from all reviewers. They accepted it immediately, with no revisions.
The article is “Ethical classification of ME/CFS in the UK” and you can access a free copy here at my website: https://www.dianeoleary.com/_files/ugd/23f4ba_ec89b541d54f45ee81a699d2c857ace1.pdf
The recommendations I made in that article - along with many of the wise recommendations made by the ME community in the UK - were ultimately embraced in the new NICE guideline. I have often wondered whether Wessely recommended my paper knowing that, in the end, his legal concerns would override it.
For what it’s worth, I’m guessing the world would be better off overall if you went ahead and published that silenced material. I don’t know the legal issues you’re dealing with, but the power he has over ME discourse is certainly not consistent with usual standards for peer review.
Thanks for a very thorough and clarifying text! It’s a good complement to mentioned reactions from some people within the ME/CFS-community. A community that has been treated so unacceptably since forever - it’s understandable that some are on high alert. Mostly this is of good I believe, we need different kinds of people working together to make a change. You ”responding” here on Substack hopefully makes things clearer and the community stronger.
Very well said. Not at all my impression from reading your books. It seems there can always be a price when putting work forward but that should never be cause for doubt. Politics is a part of every human endeavor unfortunately. The book is a gift to people who have suffered through this type of experience. Thank you.
I'm only partway through the book at this point, but I've read enough of it to know that those comments on blue sky are way off base. It's really frustrating when things like that can take on a life of their own on social media.
Re: title – maybe “Hysteria” (versus Hysteria) would have been better
Thanks for this article, Emily, and I'm looking forward to reading the book. Had my GP not told me to 'crack on with life' when I cam to him in December 2022, and instead told me to rest, I have no doubt that I wouldn't now need to spend 23 hours per day in bed. He even said - and I remember verbatim - 'You don't want to end up like people with ME who lie around in bed all day'. What an irony...
Hello, Emily, from a fellow anthropologist (non-practicing) and Long Covid with ME/CFS sufferer. I look forward to reading your book when I recover a bit more and have the spoons to spare. This, towards the top of your article here, really caught my attention: "...several publishers said they couldn’t publish a book on Long Covid." Would you be comfortable unpacking that for us at all? Thank you!
Many just said they weren't interested in publishing a book on Long Covid. Another colleague of mine has received similar notes. That's why I shared so many stories from people I interviewed on the blog. I thought it was important to share the diverse stories and ways of experiencing the illness.
Thank you for your comment.