Upper Airway Resistance Syndrome (UARS): a common underlying cause for all "chronic complex illnesses"? (ME/CFS, fibro, GWI, etc.)

nataliezzz said:
100% of them had an abnormally small oral cavity based on measurements taken by an ENT, so clearly their low BP/OH is in some way related to their sleep-disordered breathing.
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Again, you’re talking about causation when there is no basis of doing so. You’re going way beyond the evidence here.

You can find an almost infinite amount of measurements in humans bodies that will be correlated with something else. That does not mean that they have anything to do with each other.
 
Utsikt said:
As I said at the end of the quote, vague notions about the limbic system isn’t enough of an explanation.
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Well, I wouldn't quite call it "vague notions." I think it's a pretty good hypothesis, and we already have a known disorder (temporal lobe/limbic epilepsy) for which airflow input to the limbic system is associated with pathological consequences.
 
Utsikt said:
Again, you’re talking about causation when there is no basis of doing so. You’re going way beyond the evidence here.

You can find an almost infinite amount of measurements in humans bodies that will be correlated with something else. That does not mean that they have anything to do with each other.
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What? Are you saying that 93/400 people with UARS (consecutively diagnosed patients who underwent polysomnography at Stanford Sleep Disorders Center) having low blood pressure happens by chance? That it has nothing to do with their sleep-disordered breathing?
 
nataliezzz said:
Well, I wouldn't quite call it "vague notions." I think it's a pretty good hypothesis, and we already have a known disorder (temporal lobe/limbic epilepsy) for which airflow input to the limbic system is associated with pathological consequences.
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You have not given any explanations for why the limbic system suddenly becomes a problem for some, but not for most. Most people get infections, «stressors» or trauma. If that was the cause - everyone with OSA would get FM/ME/CFS eventually. There has to be something else that’s involved to make it a problem for the people it is a problem for.

PS. I think Trish tried to allude to it - but if you want to have a discussion where people on S4ME can participate, it is probably necessary to put the text in a post on the forum and not link to a X/BS thread. It would also be very much appreciated if you could put quotes from the articles in quotes in your post and link the source when you use it. It’s impossible to follow the arguments through images and external links.
 
nataliezzz said:
What? Are you saying that 93/400 people with UARS (consecutively diagnosed patients who underwent polysomnography at Stanford Sleep Disorders Center) having low blood pressure happens by chance? That it has nothing to do with their sleep-disordered breathing?
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I’m not saying that it isn’t anything. I’m saying that you can’t say that is based on the evidence you’ve presented.

Correlation does not imply causation.
 
nataliezzz said:
OSA is well recognized to be associated with hypersomonolence & fatigue, & yet the majority of people with OSA are asymptomatic - why? This is what we need to find out, and this theory offers a possible explanation.
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But is OSA well recognised to be associated with other symptoms of ME/CFS other tahn fatigue? If not, how can your theory explain anything to do with ME/CFS.
 
Utsikt said:
You have not given any explanations for why the limbic system suddenly becomes a problem for some, but not for most. Most people get infections, «stressors» or trauma. If that was the cause - everyone with OSA would get FM/ME/CFS eventually. There has to be something else that’s involved to make it a problem for the people it is a problem for.

PS. I think Trish tried to allude to it - but if you want to have a discussion where people on S4ME can participate, it is probably necessary to put the text in a post on the forum and not link to a X/BS thread. It would also be very much appreciated if you could put quotes from the articles in quotes in your post and link the source when you use it. It’s impossible to follow the arguments through images and external links.
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There may be multiple possible factors that predispose people to developing a UARS stress response. Having a more naturally sensitive nervous system/disposition may be one. More on that below.

Yes, point taken about putting a better explanation in the actual post. I thought the Bluesky thread was a good option, but I can come back to my post & flesh it out when I have time. I'll do that later. Right now I'm going to take a break from this. And I don't think we are going to get very far if people say things like "correlation does not imply causation" for 93/400 consecutive UARS patients having low BP when only 2/3,369 (.06%) consecutive OSAS patients had low BP.



Of course I don't think UARS & OSAS are actually separate disorders & you'd likely see some of these symptoms/traits varying inversely with AHI just like you do w/ symptoms like sleep-onset insomnia/headaches/IBS as previously shown. I think there's a bidirectional relationship; people w/ more naturally sensitive dispositions (a more sensitive limbic system?) are more likely to develop a (worse) UARS stress response & then the chronic stress of UARS leads to increased sensitivity/anxiety/depression (in some individuals). But as I stated in my post, I think when you have people who are both highly sensitized to IFL (who likely often have innately sensitive nervous systems predisposing them) & mild sleep-disordered breathing (high % IFL w/ little/no time spent in apnea to balance it out), you get people w/ the most severe presentations of UARS (likely includes many ME/CFS & fibromyalgia folks).

https://www.researchgate.net/public...me_a_link_to_the_functional_somatic_syndromes
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Jonathan Edwards said:
No but I checked up on Dr Gold and PubMed.
It seems that Gold has been batting on about this for twenty years but not published anything of interest.
Why pick this story out of a hundred other much the same?
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Because he is primarily a clinician seeing patients? And no one paid attention to his theory? Sleep medicine doctors make ridiculous arguments like the below in defense of the sleep fragmentation paradigm of sleep-disordered breathing. I'm not going to engage with arguments making personal attacks on Dr. Gold when it comes to discussing UARS. Taking a break from this for now.
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Trish said:
But is OSA well recognised to be associated with other symptoms of ME/CFS other tahn fatigue? If not, how can your theory explain anything to do with ME/CFS.
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According to this theory (which has plenty of supporting evidence, it's just that no one has directly observed the stress response in the brain with something like fMRI of sleeping patients), the sleepiness & fatigue in sleep-disordered breathing patients is primarily driven by a stress response to inspiratory flow limitation. A stress response of the limbic system to inspiratory flow limitation could result in many symptoms like body pain, IBS, insomnia, headaches, etc. which have all been demonstrated to be associated with UARS/OSAS. Some people have significant sleepiness/fatigue, some don't. Some have pain/IBS/headaches/insomnia/etc., some don't. Like I said, I will try to come back and add a more detailed explanation to my post when I have time since it appears sharing the threads was not a good way to go, but all of the information is there in the threads for those who would like to read it. Ok, actually taking a break now.
 
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Trish said:
Does the UARS treatment lead to complete remission of all ME/CFS symptoms, or just the disrupted sleep and fatigue, for example does it abolish PEM, OI, pain, cognitive dysfunction? And has it reversed the 2day CPET effects often found in ME/CFS?
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I haven't seen any attempt to answer this fundamental question if the hypothesis is to be worth exploring. If there is no evidence apart from an anecdote or two of some improvement in some symptoms, then the hypothesis is a non starter.

The thread title is:
Upper Airway Resistance Syndrome (UARS): a common underlying cause for all "chronic complex illnesses"? (ME/CFS, fibro, GWI, etc.)

I'm getting a bit confused by the flood of copied stuff about symptoms that occur in some people with UARS like blood pressure differences and psychological differences that have nothing to do with ME/CFS.

I don't think there's much point me spending more time trying to get my head around this idea about ME/CFS if there's no direct evidence to support it.
 
nataliezzz said:
A stress response of the limbic system could result in many symptoms like body pain, IBS, insomnia, headaches, etc. which have all been demonstrated to be associated UARS/OSAS. Some people have significant sleepiness/fatigue, some don't. Some have IBS/headaches/insomnia, some don't.
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I think most importantly a theory should be able to explain PEM one way or another. I don't really see how it does that?

Another thing that turns me off from this theory is that it's supposed to explain a whole host of very different diseases. People have been trying to blame stress for ME/CFS, FM, IBS, POTS, migraines, insomnia and many other diseases forever. And while the autonomic nervous system is cleary involved I highly doubt it's the main driver for any of those.

Said in another way: since stress causes / exacerbate so many symptoms and lots of things can cause stress it's really easy to create theories around this. Which many people have done. None however, have stood the test of time our lead to real treatment.

Finally I can imagine it's not nice to have many people criticize your theory. But please remember that people here are generally pretty smart and well researched and have read countless of theories just like yours that just don't seem to have a strong scientific basis. I also think everyone here has the shared goal of advancing ME/CFS research, and that requires us to be critical.

If we would consider the evidence for your theory strong enough, then it would be on equal footing with a hundred other theories. I don't think it would be in the interest of the field to throw money at all of those. Instead we should keep working on theories and ideas for which we have more evidence and a stronger model of how it relates to symptoms.
 
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nataliezzz said:
And I don't think we are going to get very far if people say things like "correlation does not imply causation" for 93/400 consecutive UARS patients having low BP when only 2/3,369 (.06%) consecutive OSAS patients had low BP.
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I have to assume you understand what correlation is, and why it does not imply causation.

So why is it not a relevant argument? As I said previously, all kinds of things are correlated, but completely unrelated. It is your (or Dr Gold’s) job to show that the things are in fact causally related when you make an assertion, not mine to show that they are not.

I’m really not sure what else you expected from a science forum?
nataliezzz said:
I think there's a bidirectional relationship; people w/ more naturally sensitive dispositions (a more sensitive limbic system?)
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This ls the vague notion about limbic systems I was talking about. There is nothing here to go on. What does that even mean?
nataliezzz said:
I'm not going to engage with arguments making personal attacks on Dr. Gold when it comes to discussing UARS.
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It is not a personal attack on someone to say that what they’ve published hasn’t been of any interest. It’s the complete opposite of a personal attack - it’s an «attack» of their work.
 
@nataliezzz I know it can be upsetting to get strong disagreement with your ideas like this.

I just want to recommend presenting more specific and organized arguments. It's hard for me, and it sounds like for others, to follow the line of thought here. It's a ton of things at once, and spread across numerous posts on other social media. I think if you could give a clear bit about what you're main claim is, and, somewhat briefly, the best pieces of evidence for it, it'd make for a more productive discussion.
 
forestglip said:
@nataliezzz I know it can be upsetting to get strong disagreement with your ideas like this.

I just want to recommend presenting more specific and organized arguments. It's hard for me, and it sounds like for others, to follow the line of thought here. It's a ton of things at once, and spread across numerous posts on other social media. I think if you could give a clear bit about what you're main claim is, and, somewhat briefly, the best pieces of evidence for it, it'd make for a more productive discussion.
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Thank you for the constructive feedback. I thought sharing the Bluesky thread was the best way to go because there's a lot of evidence for this theory (not necessarily specifically for ME/CFS/PEM, but related disorders) that I've laid out in great detail there with links to all the relevant studies (& screenshots showing data/graphs/etc. from them), but I'm getting feedback from everyone that this is not accessible/preferred to people. I will come back to my post here sometime later this week and revise it so it provides a better overview of the theory.
 
Jesse said:
I think most importantly a theory should be able to explain PEM one way or another. I don't really see how it does that?
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Hi Jesse, I am going to come back to my post here sometime later this week and revise it so it provides a better overview of the theory, including how it may explain PEM, but for now...

In my OP I linked to a thread I made specifically on how I think UARS can explain PEM, and why I think PEM is best explained as a CNS problem & not a metabolic/mitochondrial/etc. problem. It cites @ME/CFS Skeptic 's analysis of 2-day CPET data showing that 2-day CPET does not reliably distinguish between ME/CFS patients & controls (& that overall metabolic differences between the two seem modest). It also ties in Dr. Herbert Renz-Polster's detailed hypothesis/write-up about PEM resulting from impaired adaptation to/recovery from exertion due to a dysfunctional CNS stress response. I'll link it here again though (add "cancel" after the x in the URL to view it without an account):



Anyways, if people want, I'd be happy to just leave ME/CFS & PEM out of it since PEM is not an established symptom of UARS. We can just discuss the evidence re: fibromyalgia & Gulf War illness, for example.
Jesse said:
Another thing that turns me off from this theory is that it's supposed to explain a whole host of very different diseases. People have been trying to blame stress for ME/CFS, FM, IBS, POTS, migraines, insomnia and many other diseases forever. And while the autonomic nervous system is cleary involved I highly doubt it's the main driver for any of those.
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Sorry it turns you off the theory, that's not a good reason for rejecting the theory though. UARS/OSAS is theorized to be caused by a physiological stress response in the brain to inspiratory flow limitation during sleep (while people are unconscious!), it has nothing to do with daytime/psychological stress, though it can likely be triggered by psychological stress/trauma (along with any other stressor - please acknowledge the many, many ME/CFS patients out there who had clear non-infectious triggers to their illness), and it can likely cause/contribute to "psychiatric" symptoms like chronic insomnia/anxiety/depression/etc. (note I put psychiatric in quotes because I think these symptoms can be direct symptoms of UARS just like depression can be a symptom of hypothyroidism, MS, Parkinson's, etc.)
Jesse said:
Finally I can imagine it's not nice to have many people criticize your theory. But please remember that people here are generally pretty smart and well researched and have read countless of theories just like yours that just don't seem to have a strong scientific basis. I also think everyone here has the shared goal of advancing ME/CFS research, and that requires us to be critical.

If we would consider the evidence for your theory strong enough, then it would be on equal footing with a hundred other theories. I don't think it would be in the interest of the field to throw money at all of those. Instead we should keep working on theories and ideas for which we have more evidence and a stronger model of how it relates to symptoms.
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This is not my theory, this is Dr. Gold's theory. He is the medical director at Stony Brook University Sleep Disorders Center, and he has actually continued to publish research (whether or not sleep medicine finds it compelling does not make it bad research), he's just primarily a clinician, not a researcher.
https://www.researchgate.net/profile/Avram-Gold-2

His theory was published in Sleep Medicine Reviews in 2011 and sleep medicine largely ignored it/ridiculed it, again making arguments like the ones I have shared screenshots of above such as: "As has been the case with the absence of experimental data on the utility of parachutes in saving lives, excessive sleepiness due to recurrent arousals/awakenings is an obvious conclusion based on purely rational thought...with such overtly clear and simple facts, there is no need for experimental or even observational data on whether sleep fragmentation from recurrent arousals in sleep apnea causes daytime sleepiness."

That is not how science works! lol
 
NelliePledge said:
Hi @nataliezzz if like me if you’re not on twitter you can only see the first post on a thread so those links don’t function as a way to convey information to me and others in the same position.
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Yes, sorry about that. I haven't yet updated my Bluesky thread with all of the information I have on X/Twitter. Like I said, you can add "cancel" in the URL to view any full X thread without an account. For ex, here's a link to the thread mentioned above (it may take a minute to load):
https://xcancel.com/PSSD_Info/status/1917661692785483973
 
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