Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

@dave30th Thanks for this write-up.

Thanks for calling out the atrocities playing out in Minneapolis, too. I've been taken aback a little bit if those in the ME/LC community (stateside and abroad) aren't seeing or comprehending what is transpiring in MN. This has ripples to trust in federal government and HHS/NIH etc, if any weren't making those connections.
 
Dakota15 said:
I've been taken aback a little bit if those in the ME/LC community (stateside and abroad) aren't seeing or comprehending what is transpiring in MN.
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I have been following developments from the UK and seen posts on Bluesky from you and others in MN. It's horrifying. I think I saw something about #MEAction USA commenting. I hope you're coping OK. I'm sure others all over the world are with you in sympathy.
 
Thanks @Trish.

I understand the outrage of this book, and share that severe disappointment. It's not okay. But it's just hard to get there emotionally right now, when I live less than 15 minutes from where Renee Good & Alex Pretti were murdered by our own federal government (and then lied to/gaslighted). I think observing some specific outrage by certain ME advocates over this book has just made me felt more disconnected to this community than I had felt in some time. Like, I'm worried about getting murdered by a paramilitary masked agent with impunity right now in my neighborhood. I know I'm at an epicenter of an emotional kerosine right now when you're on the front lines, but sometimes I think even in our bubble perspective can be lost on us in terms of thinking it's true life or death, even if we think it feels as such (I also acknowledge the profound grief felt this week with all of us, when our community members are leaving us tragically). I get it though and try my best to be patient and understanding we are all where our feet are, and how that shapes how we view the world around us.

Thanks Dave again for acknowledging, and seeing us here in MN while we stand shoulder to shoulder against tyranny. And hoping for a day when books are published on this disease that we don't have to do the heavy lifting of fact-checking, auditing, quality control & more.
 
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Dakota15 said:
I think observing some specific outrage by certain ME advocates over this book has just made me felt more disconnected to this community than I had ever felt before.
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That's very understandable. When I think of all the horrors in the world, I sometimes wonder why I'm cross about what some stupid ignorant person has written in a book. You are in the midst of such a threatening situation, I can only imagine how outraged and terrified you and the people around you must be. :broken_heart:
 
Dakota15 said:
Thanks @Trish.

I understand the outrage of this book, and share that severe disappointment. It's not okay. But it's just hard to get there emotionally right now, when I live less than 15 minutes from where Renee Good & Alex Pretti were murdered by our own federal government (and then lied to/gaslighted). I think observing some specific outrage by certain ME advocates over this book has just made me felt more disconnected to this community than I had ever felt before. Like, I'm worried about getting murdered by a paramilitary masked agent with impunity right now in my neighborhood. I know I'm at an epicenter of an emotional kerosine right now, but sometimes I think even in our bubble perspective can be lost on us in terms of thinking it's true life or death, even if we think it feels as such (I also acknowledge the profound grief felt this week with all of us, when our community members are leaving us tragically). I get it though and try my best to be patient and understanding we are all where our feet are, and how that shapes how we view the world around us.

Thanks Dave again for acknowledging, and seeing us here in MN while we stand shoulder to shoulder against tyranny.
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@Dakota15 I am so angry about what ICE are doing in Minneapolis and can't imagine what you are going through right now. It is truly terrifying what is happen right now.

With respect, this MECFS stuff is life or death though. Simon Wessely propagates a policy which leads to the severe disablement and death of pwME. So when someone capitulates to his threats and pulls part of her book criticising PACE, people have a right to be outraged and angry. Because people become disabled and die because of the Wesselyite approach to MECFS. Whether or not my doctors believe in his conception of ME/CFS if I am hospitalised could be the difference between if I ever leave there again or not. It is unwritten NHS policy to let very severe pwME starve to death, and gaslight mild and moderate pwME into doing GET and CBT which often lead to extreme disablement. Other pwME get sectioned and made much worse while committed.

I understand you are under an unimaginable amount of stress right now but I'm surprised to see you invalidate the very real danger pwME face from people like Simon Wessely and their impact NHs policy in this way.

As a huge Hold Steady and Husker Du fan who has watched the situation in Minneapolis with helpless fury and fear, I am heartbroken at what you all are going through. But please bear in mind that that the danger to pwME from psychosomatic theories is not theoretical but actual and tangible.
 
V.R.T. said:
I understand you are under an unimaginable amount of stress right now but I'm surprised to see you invalidate the very real danger pwME face from people like Simon Wessely and their impact NHs policy in this way.
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I don't think Dakota has invalidated anybody's suffering. I read their posts as clearly recognising the problems with the book while also sharing their current situation and how that feels.
 
@V.R.T. I agree with you on all of that. Sincere apologies in not trying to invalidate. I share the anger on the book, and how Wessely was able to use any influence. It's beyond maddening and this specific explanation does help me see that clearer in that way. I shake my head how this is continued to be allowed and it just seems like injustice is allowed in too many parts of life right now that I can't make sense of.

Yes, the unimaginable amount of stress right now just have emotions up and need to channel them to the most productive areas. Pinky swear though that I'm not trying to invalidate any of our suffering
 
I hear you, and I'm accountable. I can phrase better, when I meant immediate threat of being gunned down in broad daylight versus implications of the book but I honestly couldn't find the right words to put down (both clearly pose a threat to health, safety, well-being, justice). I am remorseful for & apologetic to. I understand why you'd say something, and I probably would have done the same even if the intent isn't to minimize the harm/stakes that Wessely clearly is trying to insidiously inflect. I appreciate helping me see that.

Some in my circles lately have used the phrase "please give grace to those here during this time of indescribable chaos" & I may have to deploy here after I could have articulated better. Scout's honor I'll do better moving forward

Appreciate everyone on this forum & for community
 
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Dakota15 said:
Thanks Dave again for acknowledging, and seeing us here in MN while we stand shoulder to shoulder against tyranny.
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I didn't realize you live in the area! So sorry! I'm in San Francisco and ICE is hear but not in such numbers. I felt I needed to make that point upfront in order to put other things in perspective. I likely will continue to feel that way with subsequent posts.
 
dave30th said:
I would assume it might be considered Simon's intellectual property?
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I don't see why though. Usually reviewers are asked for 1. confidential remarks to the editor 2. noon-confidential comments to be available to the author. This must have been the latter. If the reviewer discloses their identity that is not the responsibility of the author. Even if the reiewer claims IP then is there an objection if the material is not being used by others for commercial purposes?

Wessely seems to do this routinely, even in email exchanges. There appears to be no recognition of the common interest of the science and medical communities.

I have been at an editor's reception arty where the editor read out reviewer's comments to illustrate his experience over the years. I think it unlikely that there is a legal limitation on this.
 
dave30th said:
you could be right. I'm curious what a lawyer would advise.
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My guess is that a breach of confidence is only a legal matter if there is a contract in place - either explicit or established by a signed agreement to abide by a set of conditions - or if there is a statutory obligation as for doctors or institutions handling personal data (I had to pass a test on this last week in order to retain my uCL email account).

Authors do not sign contracts promising to keep reviews confidential. Nor do editors.

The breach here would be if the review had been written anonymously and the reviewer's identity had been disclosed without permission. But it seems that the reviewer made his identity known.
 
Lou B Lou said:
Wessely does not appear to have to abide by the rules that bind everyone else. Someone always gives way to him.
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Yep.

Why is he special and important that he gets such endless uncritical deference and protection?
V.R.T. said:
The fact that Wessely is still acting like this behind the scenes in 2026 while proclaiming to be retired from ME research is disgraceful.

This is why I get angry when people downplay his role in this and turn their nose up at attempts to expose him.
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How such a person has been allowed to become so powerful and beyond accountability, indeed lavishly rewarded for his failure and misbehaviour, speaks disturbing volumes about the broader failure of governance in our world.
Jonathan Edwards said:
My understanding of CBT is that it is designed to manipulate.
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There is an unstated and I think very insidious and critical, necessary even, assumption in directed CBT, which is that therapist has some special broad view of and insight into the human experience and condition that enables them to dish out life advice like a wise elder.

Which I regard as dangerously delusional.
 
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