in order that someone with real expertise in this area takes this idea seriously enough to have a go at refuting it?
What would it look like if someone did take the idea seriously? What do you want to happen?
EITHER
(2.1) CFS/FMS/Hypothyroidism are extremely similar diseases which are nevertheless differently caused.
OR
(2.2) The blood test is failing to detect many cases of Hypothyroidism.
I don’t think 2.1 and 2.2 are mutually exclusive. Both could be true.
I don’t think 2.1 and 2.2 are mutually exclusive. Both could be true.
Agreed, thank you. I guess I should drop the word ‘either’? But then it doesn’t read quite right as english, even though it’s better logically.
Anyway, in that case we’d have some ‘genuine’ CFS and some ‘type 2 endocrine mistaken for CFS’. And of course there’ll probably be a few ‘type 1 hypothyroidism carelessly mistaken for CFS’ in there as well.
What would it look like if someone did take the idea seriously? What do you want to happen?
Well the first step would be to take a CFS/FMS population and see if many of them have low basal metabolic rates and low peripheral body temperatures. If that’s not true, then game over. It’s hard to imagine hypothyroidism without slow basal metabolism.
After that we should try treating those people with desiccated thyroid, since that’s what all the alternative types claim works. We should try carefully increasing the doses until we get some sort of reaction, and try to find the balance point where you’re treated but not over-treated, which will probably be different for different people. I’d anticipate that doing a lot of good for at least some of them.
After that we could play around with T4/T3 combinations in various proportions, trying to find an optimal treatment, and working out what the various mechanisms are, and if there’s something in NDT that makes it superior to the synthetics. It may be worse.
Once we had an idea of what sort of things work and on how many people, we could have a pop at a formal treatment protocol, and then I don’t see why that couldn’t be done double-blind, randomised, placebo-controlled. All those things are important when you’re trying to prove something works. But I think all of them probably get in the way when you’re trying to elucidate mechanisms.
I think what I’m getting at is that alternative medicine has had a pop at the first bit, and gone a bit of the way down the road of finding out what’s going on, whereas medical science has decided a priori what works and what doesn’t, not checked particularly carefully, and then refused afterwards to accept any evidence except PCRTs as having any value at all. And in fact they seem to have mercilessly persecuted anyone who didn’t follow their central guidelines. Which seems really weird, unless they trust doctors much less than I do.
I’m advocating a sort of combination approach. Which I’d call: ‘The Scientific Method’.
Thanks for more details. Yay for the Scientific Method.
So, is your goal to find an individual researcher and some doctors to start a study, or a few studies, along the lines you have described here? If you want to make it happen, you may need to get together some money to fund that. Or it’s possible you could take some time to find the people who would be interested and capable and talk them into doing it and find some other people with money and talk them into funding it.
Or is your goal to change in general how medicine and medical research is done? The problems you describe here are widespread, and apply to more than this particular issue. Changing the approach of the entire medical community is a bigger goal than finding a few people who will take this particular idea farther. However, I think the reasons that people have not already done this research have a lot to do with systemic problems with no quick easy fix.
I don’t think it’s just going to happen on its own. It’s not enough to say to a receptive doctor or medical researcher “Hey, here is this promising idea, let’s investigate it” and things fall into place. That’s not how the systems work. If you want to make this happen, it’s going to take a lot of work and a lot of time and likely a lot of money. Is that a project you want to take on? Not just, “Do you care about it a lot?”, because you do, but are your life circumstances such that you can devote the time to taking this farther?
There is very little research being done on CFS/FMS at all. And even less done on MCS (though that’s another issue.) And very little on many other health problems. It’s tragic.
Is MCS ‘multiple chemical sensitivity syndrome’? I think that comes into the general bag of badgers, along with that thing where people get convinced they get headaches from the wireless.
Break the TSH test, and all that should come for free.
(a) sharpen this argument until I either believe it or not (I am dithering)
Conditional on (a) being possible, and the ‘multiple-hormone-peripheral-resistance-cochran-cause’ thing looking solid:
(b) make the idea widespread enough to get people capable of working out the details interested.
(c) put such a rocket up ‘medical science’ that it will turn into a science
(d) wipe frequentist statistics and the associated false inference techniques off the face of the planet (except as a discipline of pure mathematics, where they are as deeply and eternally true as everything else)
You can tell that medical science isn’t a science because it’s got the word “science” in the name. We’ll have to think of a new name for it. In Ancient Greek, obvs.
and minor goals:
(e) Nevertheless to save the reputations of RA Fisher and Archie Cochrane, great heroes of philosophy both.
(f) Establish the reputations of Barnes and Lowe, serious geniuses who spent their lives on this.
(g) Try to stop the blame falling on the people who introduced the TSH test. They were trying their best on a very hard problem. It is not their fault that their discipline was not strong enough to catch them when they fell.
sharpen this argument until I either believe it or not
You should believe (or not) a claim based on how well it matches empirical reality (aka “evidence”), not on how sharp the argument is. Sharpening is useful insofar it narrows down the range of relevant evidence, but it still does not replace it.
put such a rocket up ‘medical science’ that it will turn into a science
I’m not sure about this. I think this was always the problem I had with quantum mechanics at university. You can’t catch them out, but they still don’t make sense. That was what first drew me to less wrong, years ago.
I mean, could many-worlds and copenhagen both be true at the same time? I think not, but I don’t know why, and I think I’m making a claim that I don’t understand, and which might be meaningless, and I don’t know how to tell.
At any rate, at the moment, with this particular idea, I seem to be able to explain too much. So I’d like to add extra constraints, and see how complicated my ideas have to become to match what I know.
Yeah, well...
Oh dear, is that what I sound like? It’s hard to tell from the inside. The thing is, I think they’ve got a few interesting things to say, but it’s so badly written that I literally can’t be bothered to read it closely enough to find out. I think their argument needs sharpening.
The post-modernist claim of ‘I have nothing to say and wish to communicate this’ seems both relevant and reversed.
Misuse is not evidence of uselessness.
Some of the frequentist tricks have their place. But they do seem very prone to misuse.
Yeah, and I should totally read the damned thing. Your enemies’ arguments are the most important source of ideas. I need a microfascist to stand on my left shoulder and point a gun to my head.
I don’t know about needing to read it. The relevant point is its existence, the details of arguments might be amusing but hardly informative. It’s not a paper about medicine, it’s a paper about fighting oppression.
And actually, if there’s this widespread attitude in medicine that only PCRTs and long-held-expert-opinion matter, and every other form of evidence should be discounted in the name of science, then maybe what they conceive of as ‘science’ is acting oppressively.
PCRTs rock for solidity, but they are hella blunt tool.
long-held-expert-opinion also rocks, but it does not come from PCRTs!
Anecdotes and clever ideas are tricky-as-all-hell, but that doesn’t mean you should ignore them.
I don’t suppose you’ve read that wretched paper and can summarise it?
Blah blah microfascism blah legitimacy of truth blah Cochrane hierarchy blah Jacques Derrida blah hegemonic discourses blah subjugated knowledge blah 20th century totalitarianism blah Orwell’s totalitarian vision blah we must resist the totalitarian program blah blah blah.
Money quote: “Those who are wedded to the idea of ‘evidence’ in the health sciences maintain what is essentially a Newtonian, mechanistic world view: they tend to believe that reality is objective, which is to say that it exists, ‘out there’...”
They likely don’t make a good case for their opposition to the focus of objectivity, but the focus on objectivity is not without problems.
On example would be placebo-controlled drugs, in standard trials it doesn’t matter whether people who they get a placebo or an active drug know what they are getting because that’s subjective knowledge. The thing that matters is whether an objective third-party thinks the experiement tried to control for placebo.
As far as microfascism goes, the law that’s in effect that forbids me from healing other people was passed under Hitler.
On example would be placebo-controlled drugs, in standard trials it doesn’t matter whether people who they get a placebo or an active drug know what they are getting because that’s subjective knowledge. The thing that matters is whether an objective third-party thinks the experiement tried to control for placebo.
Sense make not.
Double-blind trials are double-blind for a reason. And subjective knowledge can certain affect objective outcomes, that’s not an issue.
As far as microfascism goes, the law that’s in effect that forbids me from healing other people was passed under Hitler.
We know from Rabkin et al’s paper How blind is blind? Assessment of patient and doctor medication guesses in a placebo-controlled trial of imipramine and phenelzine. that particpants in drug trials often know whether or not they get the active drug.
Standard protocols for double-blinding don’t effectively prevent the participants from knowing whether they get a placebo or the real drug. Yet there little interst of people running studies to ask the participants of their trials whether they know what they are getting.
OK, but how does that lead to “the focus on objectivity is not without problems”?
Badly run trials are evidence for the proposition that some trials are badly run, not for the proposition that focusing on objective results is problematic.
It’s not about badly run trials in the sense that trials are not run according to the gold standard. The issue is that taking active pills frequently feels different than taking sugar pills even when both pills look the same way. That’s information that patients can use to know whether they are on the active drug.
In a world where people would sincerely care about whether trials actually prevent the participants from knowing the questions that Rabkin’s asks would be routine questions in every trial.
Asking patients whether they think they got the drug or placebo, is querying for subjective knowledge. That’s a “way of knowing” that yields knowledge but that’s not practiced. A “way of knowing” that the paper you linked would predict to be neglected.
What would it look like if someone did take the idea seriously? What do you want to happen?
I don’t think 2.1 and 2.2 are mutually exclusive. Both could be true.
Agreed, thank you. I guess I should drop the word ‘either’? But then it doesn’t read quite right as english, even though it’s better logically.
Anyway, in that case we’d have some ‘genuine’ CFS and some ‘type 2 endocrine mistaken for CFS’. And of course there’ll probably be a few ‘type 1 hypothyroidism carelessly mistaken for CFS’ in there as well.
Well the first step would be to take a CFS/FMS population and see if many of them have low basal metabolic rates and low peripheral body temperatures. If that’s not true, then game over. It’s hard to imagine hypothyroidism without slow basal metabolism.
After that we should try treating those people with desiccated thyroid, since that’s what all the alternative types claim works. We should try carefully increasing the doses until we get some sort of reaction, and try to find the balance point where you’re treated but not over-treated, which will probably be different for different people. I’d anticipate that doing a lot of good for at least some of them.
After that we could play around with T4/T3 combinations in various proportions, trying to find an optimal treatment, and working out what the various mechanisms are, and if there’s something in NDT that makes it superior to the synthetics. It may be worse.
Once we had an idea of what sort of things work and on how many people, we could have a pop at a formal treatment protocol, and then I don’t see why that couldn’t be done double-blind, randomised, placebo-controlled. All those things are important when you’re trying to prove something works. But I think all of them probably get in the way when you’re trying to elucidate mechanisms.
I think what I’m getting at is that alternative medicine has had a pop at the first bit, and gone a bit of the way down the road of finding out what’s going on, whereas medical science has decided a priori what works and what doesn’t, not checked particularly carefully, and then refused afterwards to accept any evidence except PCRTs as having any value at all. And in fact they seem to have mercilessly persecuted anyone who didn’t follow their central guidelines. Which seems really weird, unless they trust doctors much less than I do.
I’m advocating a sort of combination approach. Which I’d call: ‘The Scientific Method’.
Thanks for more details. Yay for the Scientific Method.
So, is your goal to find an individual researcher and some doctors to start a study, or a few studies, along the lines you have described here? If you want to make it happen, you may need to get together some money to fund that. Or it’s possible you could take some time to find the people who would be interested and capable and talk them into doing it and find some other people with money and talk them into funding it.
Or is your goal to change in general how medicine and medical research is done? The problems you describe here are widespread, and apply to more than this particular issue. Changing the approach of the entire medical community is a bigger goal than finding a few people who will take this particular idea farther. However, I think the reasons that people have not already done this research have a lot to do with systemic problems with no quick easy fix.
I don’t think it’s just going to happen on its own. It’s not enough to say to a receptive doctor or medical researcher “Hey, here is this promising idea, let’s investigate it” and things fall into place. That’s not how the systems work. If you want to make this happen, it’s going to take a lot of work and a lot of time and likely a lot of money. Is that a project you want to take on? Not just, “Do you care about it a lot?”, because you do, but are your life circumstances such that you can devote the time to taking this farther?
There is very little research being done on CFS/FMS at all. And even less done on MCS (though that’s another issue.) And very little on many other health problems. It’s tragic.
Is MCS ‘multiple chemical sensitivity syndrome’? I think that comes into the general bag of badgers, along with that thing where people get convinced they get headaches from the wireless.
Break the TSH test, and all that should come for free.
So, my current goals are to:
(a) sharpen this argument until I either believe it or not (I am dithering)
Conditional on (a) being possible, and the ‘multiple-hormone-peripheral-resistance-cochran-cause’ thing looking solid:
(b) make the idea widespread enough to get people capable of working out the details interested.
(c) put such a rocket up ‘medical science’ that it will turn into a science
(d) wipe frequentist statistics and the associated false inference techniques off the face of the planet (except as a discipline of pure mathematics, where they are as deeply and eternally true as everything else)
You can tell that medical science isn’t a science because it’s got the word “science” in the name. We’ll have to think of a new name for it. In Ancient Greek, obvs.
and minor goals:
(e) Nevertheless to save the reputations of RA Fisher and Archie Cochrane, great heroes of philosophy both.
(f) Establish the reputations of Barnes and Lowe, serious geniuses who spent their lives on this.
(g) Try to stop the blame falling on the people who introduced the TSH test. They were trying their best on a very hard problem. It is not their fault that their discipline was not strong enough to catch them when they fell.
You should believe (or not) a claim based on how well it matches empirical reality (aka “evidence”), not on how sharp the argument is. Sharpening is useful insofar it narrows down the range of relevant evidence, but it still does not replace it.
Yeah, well...
Misuse is not evidence of uselessness.
I’m not sure about this. I think this was always the problem I had with quantum mechanics at university. You can’t catch them out, but they still don’t make sense. That was what first drew me to less wrong, years ago.
I mean, could many-worlds and copenhagen both be true at the same time? I think not, but I don’t know why, and I think I’m making a claim that I don’t understand, and which might be meaningless, and I don’t know how to tell.
At any rate, at the moment, with this particular idea, I seem to be able to explain too much. So I’d like to add extra constraints, and see how complicated my ideas have to become to match what I know.
Oh dear, is that what I sound like? It’s hard to tell from the inside. The thing is, I think they’ve got a few interesting things to say, but it’s so badly written that I literally can’t be bothered to read it closely enough to find out. I think their argument needs sharpening.
The post-modernist claim of ‘I have nothing to say and wish to communicate this’ seems both relevant and reversed.
Some of the frequentist tricks have their place. But they do seem very prone to misuse.
Not quite, actually the opposite—you expressed desire for medicine to become more like a science and my link showed you some reactions to this idea.
Yeah, and I should totally read the damned thing. Your enemies’ arguments are the most important source of ideas. I need a microfascist to stand on my left shoulder and point a gun to my head.
I don’t know about needing to read it. The relevant point is its existence, the details of arguments might be amusing but hardly informative. It’s not a paper about medicine, it’s a paper about fighting oppression.
And actually, if there’s this widespread attitude in medicine that only PCRTs and long-held-expert-opinion matter, and every other form of evidence should be discounted in the name of science, then maybe what they conceive of as ‘science’ is acting oppressively.
PCRTs rock for solidity, but they are hella blunt tool.
long-held-expert-opinion also rocks, but it does not come from PCRTs!
Anecdotes and clever ideas are tricky-as-all-hell, but that doesn’t mean you should ignore them.
I don’t suppose you’ve read that wretched paper and can summarise it?
I’ve paged through the paper.
Blah blah microfascism blah legitimacy of truth blah Cochrane hierarchy blah Jacques Derrida blah hegemonic discourses blah subjugated knowledge blah 20th century totalitarianism blah Orwell’s totalitarian vision blah we must resist the totalitarian program blah blah blah.
Money quote: “Those who are wedded to the idea of ‘evidence’ in the health sciences maintain what is essentially a Newtonian, mechanistic world view: they tend to believe that reality is objective, which is to say that it exists, ‘out there’...”
They likely don’t make a good case for their opposition to the focus of objectivity, but the focus on objectivity is not without problems.
On example would be placebo-controlled drugs, in standard trials it doesn’t matter whether people who they get a placebo or an active drug know what they are getting because that’s subjective knowledge. The thing that matters is whether an objective third-party thinks the experiement tried to control for placebo.
As far as microfascism goes, the law that’s in effect that forbids me from healing other people was passed under Hitler.
Sense make not.
Double-blind trials are double-blind for a reason. And subjective knowledge can certain affect objective outcomes, that’s not an issue.
...and so what?
We know from Rabkin et al’s paper
How blind is blind? Assessment of patient and doctor medication guesses in a placebo-controlled trial of imipramine and phenelzine.that particpants in drug trials often know whether or not they get the active drug.Standard protocols for double-blinding don’t effectively prevent the participants from knowing whether they get a placebo or the real drug. Yet there little interst of people running studies to ask the participants of their trials whether they know what they are getting.
OK, but how does that lead to “the focus on objectivity is not without problems”?
Badly run trials are evidence for the proposition that some trials are badly run, not for the proposition that focusing on objective results is problematic.
It’s not about badly run trials in the sense that trials are not run according to the gold standard. The issue is that taking active pills frequently feels different than taking sugar pills even when both pills look the same way. That’s information that patients can use to know whether they are on the active drug.
In a world where people would sincerely care about whether trials actually prevent the participants from knowing the questions that Rabkin’s asks would be routine questions in every trial.
Asking patients whether they think they got the drug or placebo, is querying for subjective knowledge. That’s a “way of knowing” that yields knowledge but that’s not practiced. A “way of knowing” that the paper you linked would predict to be neglected.
Thanks, maybe I’ll save it until after I’m dead.