Ash
Senior Member (Voting Rights)
It is isn't it?
They do this too. Mostly under the banner of Breathing Pattern Disorder.
Wired Magazine: The Painful Truth About Long Covid
- Thread starter leokitten
- Start date
They do this too. Mostly under the banner of Breathing Pattern Disorder.
ScoutB
Senior Member (Voting Rights)
I'm guessing this discussion has not moved Alan's position one bit (well, it's likely made him more convinced than ever that the opposition to mind-body stuff just stems from 'an insular community clinging to its defense mechanisms'). Arguing with dozens of people on the internet is just not how anyone changes their mind.
However, I do think this thread now contains a lot of really good writing about the issues we have with the Wired piece, and harm BPS methods have led to, and it's helpful to have it all in one place for future reference.
However, I do think this thread now contains a lot of really good writing about the issues we have with the Wired piece, and harm BPS methods have led to, and it's helpful to have it all in one place for future reference.
Last paragraph of the Wired article:
The ending appears meant to scare readers into believing there's no hope for improvement from long COVID if scientists are too scared to speak about or study mind-body interventions. "And we know what happens then: Nobody ever gets better." Who's "we"? Are you speaking for the reader? I certainly don't know that. Some people do recover from long COVID, so the statement is objectively false. The sentence is also implying that you have seen the truth, and the truth is that there will never be a treatment for long COVID that doesn't depend on these mind-body interventions. But you don't know that. At least, you haven't presented convincing evidence for it in the article. You presented some anecdotes about mind-body interventions working. You presented no evidence against the possibility of a medication leading to improvement. (I'm not sure how it'd even be possible to prove this.) Even if the mind-body interventions work, that doesn't exclude the possibility of a medication working as well.
Taken together with the opening paragraphs being about how long COVID is "very strange", it comes across like the piece is mainly meant to persuade the reader that this disease does not fit what we know about any other disease, so forget any possibility of biomedical science being of any help, and listen closely to the answers in these powerful stories.
It's probably an effective scare tactic. I worry parents and doctors are going to read that and fear that they only have one option for their sick loved ones: send them to one of these mind-body practitioners, even if it's against their will. It's for their own good, after all, since there's no hope otherwise. You also illustrated in the article how Giorgia Lupi only recovered after trying three courses, so might as well keep sending sick people to different courses if the first ones don't work.
I don't personally have an issue with studies responsibly testing these interventions (except in terms of them wasting time and resources since I don't consider them especially promising compared to fields like genetics). I don't think it's out of the realm of possibility that some people do improve if they do some sort of thinking technique. If it works, great. I'm not unique in that during the early years of my time with ME/CFS, I tried plenty of things in this "mind-body" space out of hope and desperation: many different forms of exercise; meditation, sometimes for over an hour per sitting; a therapy technique called ACT. If a trial comes along tomorrow and convincingly shows that people can go back to work or walk normal amounts after being bed-bound because they yelled "Stop" while standing on a piece of paper, I'd be buying a piece of paper so fast. But I have an issue with myself or others being pressured to do these interventions based on weak evidence like a one-sided collection of emotive anecdotes in a magazine.
You said the piece isn't meant to argue that mind-body therapies work. But the way it's written, that's going to be the take-away anyway.
P.S. This is incorrect:
The ending appears meant to scare readers into believing there's no hope for improvement from long COVID if scientists are too scared to speak about or study mind-body interventions. "And we know what happens then: Nobody ever gets better." Who's "we"? Are you speaking for the reader? I certainly don't know that. Some people do recover from long COVID, so the statement is objectively false. The sentence is also implying that you have seen the truth, and the truth is that there will never be a treatment for long COVID that doesn't depend on these mind-body interventions. But you don't know that. At least, you haven't presented convincing evidence for it in the article. You presented some anecdotes about mind-body interventions working. You presented no evidence against the possibility of a medication leading to improvement. (I'm not sure how it'd even be possible to prove this.) Even if the mind-body interventions work, that doesn't exclude the possibility of a medication working as well.
Taken together with the opening paragraphs being about how long COVID is "very strange", it comes across like the piece is mainly meant to persuade the reader that this disease does not fit what we know about any other disease, so forget any possibility of biomedical science being of any help, and listen closely to the answers in these powerful stories.
It's probably an effective scare tactic. I worry parents and doctors are going to read that and fear that they only have one option for their sick loved ones: send them to one of these mind-body practitioners, even if it's against their will. It's for their own good, after all, since there's no hope otherwise. You also illustrated in the article how Giorgia Lupi only recovered after trying three courses, so might as well keep sending sick people to different courses if the first ones don't work.
I don't personally have an issue with studies responsibly testing these interventions (except in terms of them wasting time and resources since I don't consider them especially promising compared to fields like genetics). I don't think it's out of the realm of possibility that some people do improve if they do some sort of thinking technique. If it works, great. I'm not unique in that during the early years of my time with ME/CFS, I tried plenty of things in this "mind-body" space out of hope and desperation: many different forms of exercise; meditation, sometimes for over an hour per sitting; a therapy technique called ACT. If a trial comes along tomorrow and convincingly shows that people can go back to work or walk normal amounts after being bed-bound because they yelled "Stop" while standing on a piece of paper, I'd be buying a piece of paper so fast. But I have an issue with myself or others being pressured to do these interventions based on weak evidence like a one-sided collection of emotive anecdotes in a magazine.
You said the piece isn't meant to argue that mind-body therapies work. But the way it's written, that's going to be the take-away anyway.
P.S. This is incorrect:
In a trial, the placebo effect encompasses any reason for improvement apart from the main intervention being tested. So apart from the "power of the mind", it would also include things like natural improvement, temporarily lifted mood from being in a promising trial, or reporting bias from feeling pressure to improve. Unless these other factors are all somehow controlled for, a placebo effect is not affirming the effectiveness of the power of the mind.
This.
That really is perfect.
Explains the issue better than I can.
The problem with many people is their approach is backwards. Instead of looking for ways to test a falsifiable hypothesis (how the scientific method is supposed to work), they carefully assemble rhetorical houses of cards that only support their pet hypothesis and poke holes in anything that dares challenge it.
Human biology is messy, our understanding wildly incomplete, outcomes variable, and ethical and practical constraints limiting. Rarely are things obviously causal. Medical history is littered with ideas we thought were helpful, that turned out to be harmful or incomplete when tested with scientific rigor.
Brain retraining is the opposite. They promise to treat every illness…as long as the illness is difficult to measure or even define.
I've never seen them claim to cure HIV, or even glioblastoma which is, by definition, 'all in your head'. And like all cancers, it is actually full of genuine 'maladaptive feedback loops'. Weird how brain retraining only fixes feedback loops we don't know how to measure yet.
Alan claims he's 'not allowed' to talk about the thing that Conde Nast has platformed him for. And apparently the 27 courses being successfully sold to sick patients listed by @Lou B Lou also count as 'being silenced'?
But you can surmount this silence, if you act now, for just three easy payments of $199. Silence in Alan's world feels like QVC claiming that 'they' don't want you to know about their amazing deals!
Then Alan tries to paint us with a 9/11 conspiracy theorist brush. Funny, when his own tactics hew closer to those tropes. "Here's my 50th video on the conspiracy THEY don't want you to know about - keep an eye out for my upcoming book on being silenced."
When Maeve dies from medical neglect, or when we try to bring attention to an illness, there's real silence. But when someone punches down with the same specious 'maybe you’re maintaining your illness' story that has harmed families for decades, suddenly there’s a platform, a byline, and self-congratulations for bravery in the face of…actual suffering people.