Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019

This.

 

Indeed, it's not hard to understand. There are studies that show how easy it is to induce improvement in self-reported symptoms even with an ineffective treatment.

It therefore appears Cochrane is too invested in this paradigm to admit the problem.

 

I was listening to Jamie Lee Curtis talking about addiction today, I'm paraphrasing, but when asked what she would want to tell her younger self at the start of her journey to sobriety, she said well theres nothing because you cant hear anything you're not ready to hear, if you're not ready to hear reality, truth, you wont be able to hear it, you cant hear it until you're ready to.

and i thought of our battle to get people to see & hear the staggeringly obvious.

Its not hard to understand, but they just cant hear it. It simply wont go in. Its like water off a ducks back. I dont know how to fight that.

 

It goes even beyond that: it's possible with harmful treatment that is widely rejected as nonsensical, as long as the harm is not, basically, another disease or death. It uses cherry-picked positive subjective evidence, weak as it is, while ignoring negative subjective evidence, based entirely on: nuh uh. It truly is the ultimate pseudoscience. It has all the eminence and authority of real science, but literally none of its reliability, and even less accountability.

Truly, the entire paradigm here is flawed, it simply allows preferred conclusions to be tortured out of unreliable data. But this is Cochrane's entire reason to exist, and the paradigm on which modern clinical practice is built out of. And it's fatally flawed, it's systematically biased. It's too hard to accept, so instead they just dig deeper, committing more harm and failing far longer than any reasonable person should.

But as we've seen, exposing this is basically met with deer-in-the-headlights stares of "what the hell are you even talking about?", because this is "evidence"-based medicine, how could it be wrong? It's based on studies reviewed by professionals! How could any of this be any wrong? And yet it mostly seems to be all wrong, literally worse than nothing at all, because not only does it not add anything, it locks failure in place for decades, effectively ending all research on most conditions.

I still think that this only changes once AIs effectively transform health care, automating most of this process and concluding decisively that it's worthless. Meanwhile we record this failure as best as we can, but I don't think it will change on its own. This is human failure, and those can go on infinitely. Admitting being wrong is basically the fatal flaw here: humans are terrible at it, and doctors are even worse, the consequences of being wrong are too much to bear.

 

Usually, governments should stay out of scientific research and for good reasons. This is just such a unique case that it warrants it.

Although the proper framing here is that none of this is scientific research. Pragmatic trials and studies are in a class of their own that belong to the art of clinical care, rather than its science. They don't measure anything in a scientific sense, they can only use ratings. Lukewarm, not 15C. It's having disguised it as equivalent to science that is the issue, shielding it from accountability by insisting that governments need to stay out of scientific issues, and I absolutely agree with that. And that's basically at its core what evidence-based medicine: we can polish turds into diamonds.

So the way forward may be to make very clear how this is different, how intervening here does not interfere with science since this is, for all intents and purposes, alternative medicine. Produced by licensed professionals, yes, but still not scientific. Systematic reviews are only as good the input, and only as scientific. Systematic reviews of pseudoscience amount to pseudoscience, otherwise it's the metaphorical turd-polishing and that's just nonsense. Here the input is almost all garbage throwing-darts-at-the-wall, pragmatic studies and trials may be formal and run by professionals, but that does not make them proper science. In the end this whole process amounts to "trust us, we're experts", which ironically is the old way that so-called evidence-based medicine claims to replace. In reality it just replaced one king with another while calling it a republic.

And it has deeper implications, like the notion that medicine can treat symptoms, which is not a thing. It's often said but it's simply false. Even when they do something labeled as treating the symptoms, they are dealing with biology, they are dealing with either what causes the symptoms, or how to cover them like with anesthetics. It's basically fundamental to medicine that when they can't treat the disease, they will treat the symptoms, when really they don't even know how to do that, because in the end symptoms are not just signals of something wrong, they are something wrong. But that's a radical paradigm shift, especially one that essentially negates the nonsense that is the biopsychosocial model of illness, and much of the identity of modern medicine.

 

does anyone remember the trend in the early 2000s for whitening toothpastes that turned out they worked... for a while... by being abrasive, so at first 'fresh enamel' looking whiter but longer term not necessarily great. Or getting sent a review request a month after buying something like a bed and realising you can only do it once. So remembering in future you aren't ever going to fill it in before 6months has gone and the thing hasn't slumped in the middle or caused you back pain.

Well imagine if you were only allowed to even complete the survey at six months if you kept up the brushing with it every day even though you saw side-effects, or not only kept the mattress but slept in it every night even if well you didn't sleep or woke up aching all over. Well that would be a pretty filtered sample? If you refused the rest of the feedback from people who 'didn't try hard enough'.

Then imagine if years on people wanted to report what happened long-term from these things and saying it 'wasn't as scientific' as subjective feedback as er you know picking a 7 vs a 6 on one dodgily worded survey question to report you ended up in a wheelchair or unable to work etc. vs not having been before

You are right @rvallee I struggle to find an excuse beyond the blag of 'we don't [meaning won't] measure harms'

Is there actually an equality issue with their research on the basis that if people become more disabled - and/or their disability means they can't 'complete' then they aren't allowed to have their feedback heard. 'only recovered' matter seems to be the mantra, but it isn't really about 'recovered' as having PEM or ME/CFS seems to be what the treatment is filtering out rather than in for research explicitly tending to claim it covers that condition.