As I said in another comment, it sounds extremely plausible to me that CFS is mainly caused by a viral infection doing damage to one of the hormone glands in the HPA-axis. Nothing else out there makes any sense and I’d bet at 40% that the HPA-axis is what’s wrong with CFS sufferers.
The question is, what can we do about it right now? The medical establishment has already lost interest in doing anything about CFS. I am not a medical researcher, I don’t have loads of money either.
Perhaps interested people here on LW can form a startup-style charity to try and investigate this? I’d be up for chatting over skype or something.
£1.6million is not much, for the scale of the problem, but I would not put my rational charity dollar into CFS funding, or indeed into any first-world medical problem, and I actually have some chance of being a sufferer.
No! Not lower core body temperature! That’s a mistake everyone involved keeps making.
Low basal metabolic rate. I.e. after you’ve been asleep for a long time. Which Barnes claimed was best measured by waking armpit temperature.
Lots of papers saying thyroid hormones correlate with basal metabolic rate in animals. But not with ‘field metabolic rate’. That’s probably controlled by other hormones or the nervous system.
And core temperature is likely well defended. But basal metabolic rate has to correlate well with skin temperature (in equilibrium in a constant temperature known humidity environment, etc), because physics.
The other option is to directly measure basal metabolic rate while sleeping. That might be easier to do as a home thing these days. Barnes had to get people to go to the testing centre and then be scared stiff by complicated apparatus. They got all panicky and screwed up the test.
But if there’s some way of measuring BMR while sleeping in your own bed and you can do it every day for a week until you stop getting nervous, that looks like it would be sound.
Agreed. Some sort of 24-hour continuous thermometer attached while you slept might be good. And ideally you want to measure skin temp and outside temp, since what we’re interested in is the amount of heat passing through your surface, not your temperature per se.
But Barnes reckoned axilliary waking temperature was the best test, and he was a proper endocrinologist with access to whatever tests he wanted, and he looked at lots. And everyone thinks he was a loony because he said hypothyroidism was really common and explained everything. And I did too until I realised I’d just predicted the same thing from the simplest explanation for my mystery.
Sarah Myhill has an excellent test for CFS, which can tell you not only whether you’ve got it but how strong it is.
I like her paper. She is lying, or she is right.
If we can correlate that with Barnes’ waking-armpit-temperature thingy then I think I just buy the whole thing.
If we can’t, I think I have to give up with the ‘occult hypothyroidism everywhere’ already and retreat to ‘something funny about those tests, a few cases missed, maybe’
That’s a pretty strong statement. What makes you believe that it can only by one of those two cases?
Apart from that I’m not even sure whether she believes that she has an excelent test given that she writes: There is no simple test currently available to diagnose CFS because, as I have said already, CFS is not a diagnosis – it is a symptom.
Because her evidence is very strong. She hasn’t got it by luck or a bit of innocent p-hacking. Her test score correlates very nicely with her assessment of severity of symptoms.
I think in the quote she’s saying ‘I wouldn’t diagnose someone with CFS, that’s what they present with, my test is for mitochondrial dysfunction and that can be a cause of those symptoms, but so can e.g. lack of sleep or bad diet or hypothyroidism’. But I don’t know. Of course I think that hypothyroidism can cause mitochondrial dysfunction.
Everyone involved is using words differently, and that’s obviously confusing, but I think we have to avoid getting hung up on it and try to look for the predictions we have in common and our ways of carving reality up.
Everyone involved is using words differently, and that’s obviously confusing, but I think we have to avoid getting hung up on it and try to look for the predictions we have in common and our ways of carving reality up.
But it is ever so important not to get into pointless bunfights about words.
Fights about words are not pointless. Finding the right words is important to understand unclear territory. Getting clear about words allows to make more precise statements.
Gland damage would show up on hormone blood tests. Does CFS always start with an infection? Are there any particular suspect pathogens? Lyme Disease? Any others? If it is an immune response then it could be triggered by a whole host of different little horrors.
Whatever’s wrong with me came on slowly over months and initially presented as long sleeping and bad hangovers, followed by alcohol aversion. (I assume I was learning to avoid it) One of the major differences NDT made to me is that I went from ‘2 pints gives me a three day hangover’ to ‘a huge session makes me feel slightly woozy the morning after’.
I did get a tick bite years ago, but there was no sign of Borrelia Burgdorferi either then or now.
I did read a paper a while back claiming that there must be a second cryptic pathogen from ticks, because the symptoms often appear without the spirochete. All that might be worth a look.
EDIT: Actually that’s not true, according to my own blog:
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.
As I said in another comment, it sounds extremely plausible to me that CFS is mainly caused by a viral infection doing damage to one of the hormone glands in the HPA-axis. Nothing else out there makes any sense and I’d bet at 40% that the HPA-axis is what’s wrong with CFS sufferers.
The question is, what can we do about it right now? The medical establishment has already lost interest in doing anything about CFS. I am not a medical researcher, I don’t have loads of money either.
Perhaps interested people here on LW can form a startup-style charity to try and investigate this? I’d be up for chatting over skype or something.
https://report.nih.gov/categorical_spending_project_listing.aspx?FY=2015&ARRA=N&DCat=Chronic%20Fatigue%20Syndrome%20(ME/CFS)
There is no ‘medical establishment’. There are people trying to work out where their limited amounts of money should be best spent.
http://www.mrc.ac.uk/funding/science-areas/population-systems-medicine/cfsme/
£1.6million is not much, for the scale of the problem, but I would not put my rational charity dollar into CFS funding, or indeed into any first-world medical problem, and I actually have some chance of being a sufferer.
It seems to me a lot of the problem is due to it not being a clear diagnosis. Especially one that can be easily and objectively measured.
If johnlawrenceaspden thesis of a lower core body temperature is true, that might advance the field by providing an easier way to test for CFS.
Maybe there should be a suppository that continously measures bodytemperature and acceleration.
No! Not lower core body temperature! That’s a mistake everyone involved keeps making.
Low basal metabolic rate. I.e. after you’ve been asleep for a long time. Which Barnes claimed was best measured by waking armpit temperature.
Lots of papers saying thyroid hormones correlate with basal metabolic rate in animals. But not with ‘field metabolic rate’. That’s probably controlled by other hormones or the nervous system.
And core temperature is likely well defended. But basal metabolic rate has to correlate well with skin temperature (in equilibrium in a constant temperature known humidity environment, etc), because physics.
I think you would likely get a better measurement with 24⁄7 temperature measurement than simply measuring waking temperature on one spot.
The other option is to directly measure basal metabolic rate while sleeping. That might be easier to do as a home thing these days. Barnes had to get people to go to the testing centre and then be scared stiff by complicated apparatus. They got all panicky and screwed up the test.
But if there’s some way of measuring BMR while sleeping in your own bed and you can do it every day for a week until you stop getting nervous, that looks like it would be sound.
Agreed. Some sort of 24-hour continuous thermometer attached while you slept might be good. And ideally you want to measure skin temp and outside temp, since what we’re interested in is the amount of heat passing through your surface, not your temperature per se.
But Barnes reckoned axilliary waking temperature was the best test, and he was a proper endocrinologist with access to whatever tests he wanted, and he looked at lots. And everyone thinks he was a loony because he said hypothyroidism was really common and explained everything. And I did too until I realised I’d just predicted the same thing from the simplest explanation for my mystery.
That’s interesting. There might be some smartwatch that can measure skin temperature on the arm.
Sarah Myhill has an excellent test for CFS, which can tell you not only whether you’ve got it but how strong it is.
I like her paper. She is lying, or she is right.
If we can correlate that with Barnes’ waking-armpit-temperature thingy then I think I just buy the whole thing.
If we can’t, I think I have to give up with the ‘occult hypothyroidism everywhere’ already and retreat to ‘something funny about those tests, a few cases missed, maybe’
That’s a pretty strong statement. What makes you believe that it can only by one of those two cases?
Apart from that I’m not even sure whether she believes that she has an excelent test given that she writes:
There is no simple test currently available to diagnose CFS because, as I have said already, CFS is not a diagnosis – it is a symptom.Because her evidence is very strong. She hasn’t got it by luck or a bit of innocent p-hacking. Her test score correlates very nicely with her assessment of severity of symptoms.
I think in the quote she’s saying ‘I wouldn’t diagnose someone with CFS, that’s what they present with, my test is for mitochondrial dysfunction and that can be a cause of those symptoms, but so can e.g. lack of sleep or bad diet or hypothyroidism’. But I don’t know. Of course I think that hypothyroidism can cause mitochondrial dysfunction.
Everyone involved is using words differently, and that’s obviously confusing, but I think we have to avoid getting hung up on it and try to look for the predictions we have in common and our ways of carving reality up.
That reminds me of Jay A. Labinger: The language you use to talk about something influences the way you think about it. If the chemistry you’re talking about is truly something new, then a fight over terminology may be quite an important part of getting to understand that chemistry better.
Mitochondrial dysfunction might be a much better disease target than CFS.
Absolutely. We need to ‘carve reality at its joints’ (may his name be praised), and naming things is important, whatever St Feynman said.
But it is ever so important not to get into pointless bunfights about words.
Fights about words are not pointless. Finding the right words is important to understand unclear territory. Getting clear about words allows to make more precise statements.
Agreed, let us not get into a pointless meta-bunfight
Gland damage would show up on hormone blood tests. Does CFS always start with an infection? Are there any particular suspect pathogens? Lyme Disease? Any others? If it is an immune response then it could be triggered by a whole host of different little horrors.
Whatever’s wrong with me came on slowly over months and initially presented as long sleeping and bad hangovers, followed by alcohol aversion. (I assume I was learning to avoid it) One of the major differences NDT made to me is that I went from ‘2 pints gives me a three day hangover’ to ‘a huge session makes me feel slightly woozy the morning after’.
I did get a tick bite years ago, but there was no sign of Borrelia Burgdorferi either then or now.
I did read a paper a while back claiming that there must be a second cryptic pathogen from ticks, because the symptoms often appear without the spirochete. All that might be worth a look.
EDIT: Actually that’s not true, according to my own blog:
http://johnlawrenceaspden.blogspot.co.uk/2012/09/ok-nhs-is-brilliant.html
At the time I wrote that there was a bloody great rash. But the test then didn’t show the infection, and this summer’s tests didn’t show it either.
Jaded One, why do you think adrenal rather than thyroid? And how does adrenal fit with Sarah Myhill’s CFS/mitochondrial dysfunction thing?
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.
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.