Possibly of interest, I have contacted the journalist Jesse Singal, who defended the WIRED piece on twitter, since he and I have both written for The Dispatch. He seems interested and open, said he'll look into it and read my Dispatch article on ME at the least. Never know with journalists but maybe he'll get involved in a real way, we're direly in need of science writers who can parse both the crap psych and bio studies.
Wired Magazine: The Painful Truth About Long Covid
- Thread starter leokitten
- Start date
Many of us have been following this whole issue from the very start. We know that illness courses are wildly fluctuating, and that most recover without doing anything special. The idea that there is a "just right" way of doing this is clearly nonsense.
In the first year or so, LC communities were filled with discussions about supplements stats, with thousands and thousands of people reporting on what helped them recover. People would share recommendations, from themselves or advised by clinicians. None of this made any real difference. This is simply not how science works.
Rehabilitation models have been tested for decades, literally thousands of trials, the vast majority of them small, pilot trials. Still to this day most of them are. In some countries those treatments have been made mandatory. If it worked, we'd know, and all of us would be ecstatic about it. But it obviously doesn't, because it completely flies in the face of what's known about the course of those illnesses. Just telling people that it's because they're afraid is especially insulting, mostly because it's wrong and juvenile.
We not only all read the article, we've read it hundreds of times before, written by others, going back many decades. They're the same old arguments we've had to deal with for years, and they're always the same, so please stop this whole framing about how we, people who know this much more than you, haven't read your arguments and that we misunderstand you.
It's precisely because of how mindlessly repetitive this whole thing is that we have no patience for it, because in the meantime tens of millions of lives have been ruined and will continue to be. The stakes are completely unbalanced here, our entire lives hang on this, there is nothing theoretical about this to most of us here.
This is very different because weight is a measurable, objective thing that can be assessed independently. Psychobehavioral interventions are much more in the wellness guru range of things, entirely impossible to study because the interventions themselves consist of teaching participants to report themselves differently.
Being impossible to study should lead to this being canned, not promoted like they could be magical beans.
I love reading @rvallee's posts because there's almost always something that makes me laugh. Even if I don't always agree. (Although I think usually I do.)
Did you really miss all the trials that did exactly that? Hundreds in total with odd variations and combinations of this, subsets of that, this or that mode, backwards and forwards. Everything that you claim should be done hasn't just been done, it's been done so many times that there is zero validity in doing any more. Most trials for Long Covid are some variation of this. There are people who keep track of this.
Your argument basically boils down to "why didn't people think of this super simple thing and try it?" when it has, so many times already. When doing that is obviously something everyone tries on their own before they even see a physician. This is seriously into "there is a cure for cancer but the man won't let you know about it" territory. You are talking about a model that has been so dominant for years that many countries have made it mandatory to receive disability, which is usually refused because, well, they're rehabilitated so why would they need any support?
Utsikt
Senior Member (Voting Rights)
The problem with your argument is that when there are infinite hypotheses, an infinite amount of them will be wrong. Yet some will be right.
But when there are infinite wrong hypotheses, it isn’t unreasonable to claim that the likelihood of X actually working for Y without any controlled evidence is very, very very high.
That’s what everyone doing science are going up against. That’s why we have to try to control as many variables as possible in our studies. So that we can isolate the effect of the variable we want to study.
If you disagree, I don’t know what else to say to convince you otherwise.