MrMagoo
Senior Member (Voting Rights)
Didn't he say she is “out of her depth” earlier on this thread. Because it seems a bit projection, like actually he was journalistically out of his depth.
Wired Magazine: The Painful Truth About Long Covid by Alan Levinovitz, 2026
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Didn't he say she is “out of her depth” earlier on this thread. Because it seems a bit projection, like actually he was journalistically out of his depth.
Something along those lines, yes. That he was extensively familiar with all the literature, etc, and she didn't know what she was talking about--kind of like what he said to Megan Stevenson as well. He clearly violated core journalism principles. Hard to see how this got past Wired. A student in a journalism course at Berkeley would get failing grades if they pulled these kinds of stunts.
Liie
Senior Member (Voting Rights)
The forum rarely feels so vigorously alive as when a proponent of some cognitive-behavioural techniques for recovery turns up and tries to argue their case!
Most of the time we only talk among ourselves about these people. When an actual opponent turns up people enthusiastically leaps into the action to tear their arguments to shreds!
It also seems like we where joined be a couple of new members. Welcome @neurophusion, @hapl808, @Joni and others!
Most of the time we only talk among ourselves about these people. When an actual opponent turns up people enthusiastically leaps into the action to tear their arguments to shreds!
It also seems like we where joined be a couple of new members. Welcome @neurophusion, @hapl808, @Joni and others!
Liie
Senior Member (Voting Rights)
I would really like to discuss this but I unfortunately don't have the mental energy. I think that there are important questions here. I'm really not sure about what I think.
I will try to write a bit more about what I think in some other thread at a later point.
Exactly my experience.
Even for myself, I didn't understand sickness after exertion. I thought I weakened my immune system somehow (it started after a sickness), so I always thought I was 'fighting off a cold' because I was always pushing through. I'd work a long day, then feel sick the next day or two. I'd think: oh, maybe one of the people I worked with had a cold and now I'm fighting it off.
Somehow justified that I was just 'one of those people who got sick easily', even though I rarely *actually* got sick, just felt like I was 'fighting off' something every day.
Took me many years (and a decline into much worse stamina) to realize even cognitive exertion or a long conversation could give me delayed symptoms. That never occurred to me, and I still find it bizarre - even though it's happening to me, and I understand the various hypotheses.
So it's 'funny' to see people going: you're afraid of PEM. Huh? Afraid of what? For the first 10-15 years, I'd only read about MECFS in passing and kept trying to find other (treatable) explanations. Even now, I don't love the term ME/CFS because of how loosely it can be defined.
Anyone 'afraid of exercise' sounds more like an anxiety disorder, not to be judgmental. I was the opposite - constantly exercising for the first 1-2 years of significant ill health, and just making myself worse and worse - weightlifting, climbing, yoga, etc. As someone who tracked my workouts carefully, the decline was obvious - and I still refused to see it.
The reason 'break-dancing' works, is because we need to 'break' the maladaptive brain loop that causes illnesses ranging from MECFS to glioblastoma.
That's actually where the 'break' in break-dancing originally comes from. In Roman times, they used the famed head spin to treat illnesses of the head. In fact, in the Roman era, there is no evidence of a single diagnosed case of glioblastoma.
I'm just saying - why aren't we allowed to talk about break-dancing and glioblastoma, since we currently don't have a cure for the disease. Sure, the opponents will say, "Oh, but it could cause traumatic brain injuries!" But this negativity has had a chilling effect. Not a single study on 'doing the robot', when we know for a fact that robots don't get glioblastoma!
I have to add a '/s' because this explanation is not that much more ridiculous than the pseudoscientific explanations used by brain retraining advocates, so I don't want anyone to take it seriously.
Unless Jason Kehe at WIRED - who seems to have commissioned Alan's article minimizing biomedical causes of chronic illnesses…for reasons - would like a follow-up. Then I'd be happy to write a meandering article about break-dancing in the Roman era and its relevance to modern medicine for $2 per word.
ScoutB
Senior Member (Voting Rights)
Can relate very much to everything you wrote here. Sometimes I wonder how much of the ME/CFS cohort we could capture just by asking people if they had a long period of constantly ‘coming down’ with something that never turns into a cold.
JellyBabyKid
Senior Member (Voting Rights)
Oh, interesting. I had six months of this before I finally ended up in hospital with pneumonia and double pleurisy. I wonder if I had ME/CFS before that..?
Funny thing about Zeynep is that AL agrees with her about LC far more than he seems to notice. She was a bit controversial a few years ago because of this, it just seems like she is less into tolerating bad research than he is.
Similar story here. It is one of the main reasons I am so opposed to the exercise 'phobia' and deconditioning framing. It cannot possibly be correct in my case, and quite clearly in many many others. Our experiences are hard disproof of that claim.
But, as we all know, facts don't matter to the psychosomatic ideologues.
MrMagoo
Senior Member (Voting Rights)
I’m just gutted it wasn’t hot scotch, I reckon if I could get a afew hot toddies in me I’d give Raygunn a run for her hoppity kangaroo money.
I suppose we should be flattered? That Al chose to come here and engage, unlike those plebs over on Reddit who he didn’t bother with /s
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On Reddit, comments promoting ‘brain reprogramming’ are banned.
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MrMagoo
Senior Member (Voting Rights)
There’s a whole thread about the article with the petition against it, though.
Apparently it’s just the r/CFS sub where any comments are banned
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Covidivici
Senior Member (Voting Rights)
Thirty six pages of this?
Lawd amighty.
If it’s proof of the deleterious effect of poorly researched pseudo-scientific drivel that you need, here it is.
It triggers us because you can’t prove BRT’s lack of efficacy any more than you can prove the non-existence of a Christian God.
“Recent findings and the History of medicine both strongly suggest” is not the same as ironclad proof that the author’s thesis is a vapid and recurring cliché. So we doubt. And debate.
And waste what little resources we have. Carry on, by all means. It’s important to pick this sort of piece apart.
Lawd amighty.
If it’s proof of the deleterious effect of poorly researched pseudo-scientific drivel that you need, here it is.
It triggers us because you can’t prove BRT’s lack of efficacy any more than you can prove the non-existence of a Christian God.
“Recent findings and the History of medicine both strongly suggest” is not the same as ironclad proof that the author’s thesis is a vapid and recurring cliché. So we doubt. And debate.
And waste what little resources we have. Carry on, by all means. It’s important to pick this sort of piece apart.
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MSEsperanza
Senior Member (Voting Rights)
But wasn't there an attempt by some British PACE investigators or apologists to account for those like you (and me) who still could / can exercise (a bit) and did/ do that?
I think it went like this:
30% of pwME are under-active due to avoidance behavior and therefore severely deconditioned and tired all the time, 30% are doing too much in relation to their current alleged deconditioned state and therefore crash regularly and for 30% no particular pattern could be established.
Sorry, not able to look for the paper now, but I remember I thought the findings could be interpreted differently, less as evidence in support of but more as a counter-evidence for their fear avoidance and deconditioning theories...
Evergreen
Senior Member (Voting Rights)
Ah yes, I found that paper hilariously ridiculous.
How can there be a condition where the cause of disability is both fear of activity and being too active. And where there is nothing physiologically wrong, yet people crash and become very ill when they are normally active so they need to be told not to be active. How they could publish such drivel is beyond me. I guess it's what results from being so convinced you have to be right that nonsense can be presented as sense and get published.
It makes no sense at all.
How can there be a condition where the cause of disability is both fear of activity and being too active. And where there is nothing physiologically wrong, yet people crash and become very ill when they are normally active so they need to be told not to be active. How they could publish such drivel is beyond me. I guess it's what results from being so convinced you have to be right that nonsense can be presented as sense and get published.
It makes no sense at all.
JellyBabyKid
Senior Member (Voting Rights)
What?!
Is this some weird Shröedinger's treatment; this treatment is effective but you don't get better.
Make it make sense
JellyBabyKid
Senior Member (Voting Rights)
This hypothesis requires a psychiatric assessment for Dissociative Identity Disorder (DID) (formerly multiple personality disorder)
Which ironically is actually caused by childhood trauma.
MrMagoo
Senior Member (Voting Rights)
PACE seems to be covered in these 30% and 30% and 30% quotes.
In unrelated news, when I was at unit there was a big issue one year because the lecturer just gave everyone the pass mark. He was only interested in the top few students and the rest of us were at a loss (he didn’t teach us anything so we stopped attending).
Very lazy of him, he couldn't account for it when investigated.
In unrelated news, when I was at unit there was a big issue one year because the lecturer just gave everyone the pass mark. He was only interested in the top few students and the rest of us were at a loss (he didn’t teach us anything so we stopped attending).
Very lazy of him, he couldn't account for it when investigated.