Wired Magazine: The Painful Truth About Long Covid

Contrary to Alan, many of us can't interact with family, or life, or jobs because we're stuck to a mattress.

Which does mean online communication becomes a life line and a priority. Many of us don't get a minute free from ME to 'have a break'

Jeez though - it's like we should be grateful he's descended from the heavens to spend time with us but then just keeps insulting people.

Back to the woo woo juice and the pen Alan️ see you when you've got something to promote!

Although who am I to talk being a unicorn and all that
 
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Tern on X posted this about AL and his religious experiences: fire shooting hands, seeing cafe workers as demons and more.

It looks like from his own life and work he's spent so much time in a mindset of miracles and conversion that he genuinely feels like he's had an aha moment with the capacity of the mind and belief to transform. I agree with @dave30th that he really believes in what he says. And it's also the belief & certainty of the zealot or the newly converted.

To be honest I don't think he's really interested in the reality of Long Covid - it's just a puzzle piece that satisfies the aha moment with the brain retraining aspect.

I don't know why he'd share this though? There's reasons religious traditions keep quiet about this or one needs a massive amount of discrimination - which unfortunately for us he is lacking.

His conversations though look like they are more for him trying to convince himself he's a nice guy - but the inner a*shole can't help but keep firing shots.



www.ecstaticintegration.org

The occasional ecstasies of Alan Levinovitz

And why he can't talk about them, or not entirely
www.ecstaticintegration.org www.ecstaticintegration.org
 
I saw there was another one of these “ now imagine if @Jonathan Edwards had…”

The thing is, Jonathan Edwards is an emeritus Professor of Connective Tissue Medicine who was instrumental in the discovery of B Cell depletion therapy (rixumitab) to treat Rheumatoid Arthritis,**so he has got a solid proven knowledge and track record in medicine, scientific discovery, medical trials etc whereas Alan Levinovitz is a Professor of Religion.

so I don’t know why he keep trying to invent scenarios where “if Jonathan did x,y,z and nobody criticises (assume that’s what the latest one was) it’s apples and oranges.

I don’t even agree with Jonathan half the time but I still respect his scientific knowledge and achievement.

People react differently to someone who is a proven subject expert than someone who isn’t. That’s normal.

**credit to MEpedia
 
Jaybee00 said:
But she has time for us!

www.nytimes.com

Opinion | Protesters So Ill, They Couldn’t Get Arrested (Published 2022)

Long Covid brought attention to M.E./C.F.S., a long-ignored illness whose sufferers are too sick to accelerate research by making trouble the way AIDS activists once did.
www.nytimes.com www.nytimes.com
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I always remember buying the Red Hot and Blue cassette from HMV (yes I’m a millennial and a lefty). I’m not saying it helped much in the scheme of things but I hope it did. Always loved Keith Haring.
Maybe we need something like that.
Instead of whatever this is.
 


“The best case explanation is you got carried away and allowed yourself to be played by a losing faction in an empirical argument. Not good but it happens. None of us are immune. Opinion differences are fine, if course but this article’s problems are way, way beyond that. This is extremely high stakes for some terribly ill people, and should motivate you to fix this as best you can and actually and fully step away unless you are willing to do a lot of work to understand the topic.But even if that’s not enough motivation, frankly, all that further doubling down on this framing for this issue will get you is give other people examples to use in their writing of empirically poor, biased and very harmful framings that made their way to articles and books as late as 2026. You decide how close to Andrew Wakefield you want your name. And I say this is someone who is very critical of the mind/body duality in medicine and who has written a lot about the problems with definition of Long Covid. I am not speaking lightly.”
 
MrMagoo said:
I saw there was another one of these “ now imagine if @Jonathan Edwards had…”

The thing is, Jonathan Edwards is an emeritus Professor of Connective Tissue Medicine who was instrumental in the discovery of B Cell depletion therapy (rixumitab) to treat Rheumatoid Arthritis,**so he has got a solid proven knowledge and track record in medicine, scientific discovery, medical trials etc whereas Alan Levinovitz is a Professor of Religion.

so I don’t know why he keep trying to invent scenarios where “if Jonathan did x,y,z and nobody criticises (assume that’s what the latest one was) it’s apples and oranges.

I don’t even agree with Jonathan half the time but I still respect his scientific knowledge and achievement.

People react differently to someone who is a proven subject expert than someone who isn’t. That’s normal.

**credit to MEpedia
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Yep. He's just trying to create division. But Jonathan Edwards isn't trying to project his belief on WIRED that has a platform of millions or try to achieve world domination & profit with another book. It's a view on a forum that anyone can debate.

This is about claiming Long Covid can be cured with brain retraining - as you said apples and oranges. Looks like you touched a nerve though.

It's got to jangle the nervous system to be told you are wrong by so many people and patients. If he said it about diabetes or another illness that's taken seriously he'd be rightly looked on as one frostie short of a carton. But Long Covid fine, no problem I'm just trying to help you all.
 
Looks like no one has any answers to my last response beyond ad hominems or snide remarks. I said I'd engage in a week. But I don't have time for anyone who doesn't actually come into *my* lion's den and confront my actual points. Zeynep didn't bring up any science. She's out of her depth, and anyone here who cares about the science knows it. I have no time for her. I have no time for kooks dredging up whatever I've written or spoken about, as if that's relevant to what I've written here.

I only have time for people with the courage to address what I actually write and argue. Frankly, I hope when I come back in a week, there's more than the juvenile garbage I've seen tonight. Because that only confirms what I already thought. This community, despite its expertise, has some things about itself it can't really confront. You can dish it out, but you can't take it. "Sea lioning." "I abandoned interminable debating by my mid-twenties." "Jonathan Edwards is an Emeritus professor." "He's just trying to create division."

Look at yourselves. So cocky in the lion's den. I'm here alone. And that's all you've got? And yet...why should I be surprised. It's the rhetorical defense mechanisms that are so typical of the kind of communities I study.

Tough love. I've taken it for over a week. I've learned a lot! Your turn.
 
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Oooh get you and your bag of chips.
You realise there’s a heave European base and most people are at 4am just now. You’ll find more takers during the daylight hours.
 
Learningandlistening said:
I only have time for people with the courage to address what I actually write and argue.
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Did you ever respond to David Tuller's blog post about your article?
Did you have the courage to address it on X?

I don't have X so I don't know beyond what I've seen people share elsewhere. But I saw you posted a petition to remove the WIRED article, which is not equivalent to engaging with critiques of your work.
 
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Joni said:
Did you ever respond to David Tuller's blog post about your article? Did you post it on X?

I don't have X so I don't know beyond what I've seen people share elsewhere. But posting a petition to remove the piece is not engaging with critiques of your work.
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I don't engage with Tuller anymore after a number of personal correspondences. I did for a while. What I want is for you, here, to engage with what I wrote about insular communities, unfalsifiable foundational truths, and the parallel to hEDS. When that happens I'll engage again. If it's just "but Zeynep!" "but Tuller"? Then I'm out. I have better things to do with my time, like multi-hour Zoom calls with people who read my piece, hated it, but also want to know where I'm coming from.
 
Joni said:
Why should anyone reply to your sneering, patronizing "tough love" when you have failed to respond to any of the numerous sincere critiques of your article posted in this thread?
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I've engaged more than enough with many critiques you've offered. I've engaged with your own sneering, patronizing tough love. Just read any number of the responses to me here! It's time for you to engage with mine, on my terms. It is characteristic of insular defensive communities to continue redirecting arguments towards the defense mechanisms they've developed. I have no time for that. Engage with my critiques now that I've engaged with yours.
 
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Joni said:
Why should anyone reply to your sneering, patronizing "tough love" when you have failed to respond to any of the numerous sincere critiques of your article posted in this thread
MrMagoo said:
Oooh get you and your bag of chips.
You realise there’s a heave European base and most people are at 4am just now. You’ll find more takers during the daylight hours.
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I look forward to reading them in a week!
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Learningandlistening said:
insular communities
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I joined this community 10 minutes ago. So I'll leave it to the established members to respond to that (the members that you are refusing to engage with in good faith, for all your big boy courage). But I'll say this, when you become disabled--as everyone does if they live long enough--I hope you don't have to know what it's like to be physically incapable of forming a connection to the outside world and rely on online communities because your mitochondria don't work.

Best of luck with your new book! Maybe Rogan will have you on again. I hope you carry the energy of "It's time for you to engage with mine, on my terms" with you to his studio this time.
 
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