I am not interested in being part of a sufferer’s group. The last thing I need is a like-minded echo chamber to preach to.
No, I didn’t mean a “let’s meet for tea and share sob stories” group, I meant if we had 3-4 talented individuals with CFS and a pro-rationality mindset, it may be worth trying to see whether we can easily nudge the medical community into trying to seriously investigate the HPA/thyroid angle on CFS.
why do you think adrenal rather than thyroid?
I’m open to the possibility that the thyroid could be the main locus of the problem.
At some point, the world will work out what causes CFS. Medicine is entering a highly data-driven era and this disease will leave evidence scattered around the epigenome, gene expression levels, hormones, etc. Eventually all people in the developed world will have devices implanted to measure all this stuff and it will be analysed and the correlations will be exposed. However, my lifetime is not infinitely long, so if I can hasten that point relatively cheaply, I want to do so.
No, I didn’t mean a “let’s meet for tea and share sob stories” group, I meant if we had 3-4 talented individuals with
CFS and a pro-rationality mindset, it may be worth trying to see whether we can easily nudge the medical
community into trying to seriously investigate the HPA/thyroid angle on CFS.
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.
go scour me the medical literature for evidence that Central Sensitivity Syndrome sufferers have low basal metabolic rates
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.
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?
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.
Simmaron Research, Inc. is a Nevada-based nonprofit organization dedicated to advancing scientific research, potentially leading to the discovery of diagnostic markers and effective treatments that will ultimately improve the quality of life for people suffering from CFS/ME
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.
No, I didn’t mean a “let’s meet for tea and share sob stories” group, I meant if we had 3-4 talented individuals with CFS and a pro-rationality mindset, it may be worth trying to see whether we can easily nudge the medical community into trying to seriously investigate the HPA/thyroid angle on CFS.
I’m open to the possibility that the thyroid could be the main locus of the problem.
At some point, the world will work out what causes CFS. Medicine is entering a highly data-driven era and this disease will leave evidence scattered around the epigenome, gene expression levels, hormones, etc. Eventually all people in the developed world will have devices implanted to measure all this stuff and it will be analysed and the correlations will be exposed. However, my lifetime is not infinitely long, so if I can hasten that point relatively cheaply, I want to do so.
Pah, where is your ambition?
Well, it’s infinite in expectation, but under many scenarios I will end up dead and/or thawed.
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.