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johnlawrenceaspden comments on The Thyroid Madness : Core Argument, Evidence, Probabilities and Predictions - Less Wrong Discussion
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Ah, OK, well, that is what I am trying to do. And at the moment my principal difficulty is that I don't believe it myself. I reckon if I can grub up enough evidence to make myself believe it then making medical types believe it will not be too hard.
So if you'd like to join the effort, go scour me the medical literature for evidence that Central Sensitivity Syndrome sufferers have low basal metabolic rates, endocrine hormone resistances, or low peripheral temperatures after they have been asleep for a long time.
Or evidence against any of those things. There is no point wasting anyone's time with a good idea that is false.
Google Scholar, Pubmed (http://www.ncbi.nlm.nih.gov/pubmed), and sci-hub.io are very useful, as is membership of a university which subscribes to journals. But even better if you can think of tools I'm not using. I am new to this. When I were a lad you had to write to the authors if you wanted a copy.
And if you find an interesting paper, you can look on google scholar for other papers citing it, and see what they say. That is the sum total of my search skillz. I need the help of a proper academic.
And by the way, I don't actually think I've got CFS! It's just one of the possibilities. But I see people claiming the glory of physics without using the methods of science. And for some reason I find that very motivating.
Sure, that's one thing that might help. On the other hand it may not be the most effective way to hasten the curing of CFS/FM; it's privileging one specific hypothesis a bit too much for my liking. I am convinced that CFS is caused by some problem with the HPT/HPA-axis, and I am extremely confident that it is a real physical condition triggered by a viral illness. Beyond that I don't want to commit too much.
Medical research is time-consuming and expensive, but on the other hand there are approx. 1 million confirmed CFS sufferers in the developed world, with a penumbra of probably 1-10 million undiagnosed. That's a lot of people. Some of them are very rich or have very rich parents, and pour huge amounts of money into attacking the disease, often not applied in the most effective ways.
In addition, those who advocate for medical CFS research have pretty poor rationality skills. They cling to any hope of a biological cause, beyond the point where it is rational to support a given specific biological cause, and make death threats against researchers who provide any disconfirmatory evidence against specific hypotheses.
It's a bad situation; huge resources, huge numbers of sufferers, potentially lots of money to be marshalled, but no competent organization.
You and me sitting at our computers reading pubmed abstracts may not be the most effective attack against the disease. Maybe we should be trying to mobilise and coordinate existing money and resources more effectively?
Maybe we should try to set up a "CFS biological diagnostic test prize", in the style of X-prizes? Then this would incentivize people who are professional biomedical researchers to do the hard work for us?
That seems like a good idea. I don't think it's a project I would want to do full-time, but I would be willing to be involved.
That's cool. Maybe we should set up some kind of information sharing system like an email thread or a new top level post here on LW?
Wow, I was completely unaware of all this: https://en.wikipedia.org/wiki/Whittemore_Peterson_Institute#History
I thought people just pretty much ignored CFS and put it down to lead-swinging.
All that fits in rather nicely, though, doesn't it? What else do you know that I don't know?
Further googling around uncovered these guys:
http://simmaronresearch.com/about/
Well I've done some research into organizations and followed the news over the years, done some googling. It seems to me that CFS research has not focused enough on exploratory research looking to track down the root cause of the illness with an open mind to all biological causes. Lots of time and effort is wasted waging a pointless argument about whether the illness is psychosomatic or not, rather than accepting that it is biologically caused and looking for the cause. Time, money and effort is also wasted trying to find treatments for an illness whose etiology is unkonwn.
I am not a political man, I am trying to do a bit of harmless philosophy as a hobby. If you can mount a political attack, go for it. I would be a rubbish politician.
Also, I'm currently thinking, thyroid controls basal rate, adrenal controls rate minute-by-minute. So stick to your guns, adrenal wise, and tell me the obvious things I've missed.