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.
Click to expand...
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.
 
Last edited:
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.
Click to expand...
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.
Click to expand...
@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.
Click to expand...
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
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom