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

[Trish]

Generally speaking about some of the engagement that might be frustrating for you: I must have seen similar approaches to theories for ME/CFS upwards of 50 times. Bits and pieces taken from here or there with a lot of "presumably". If one is convinced of any idea, one can always accrue evidence from different places to make a story, but that does not make said evidence convicing.

Indeed. We get people coming to the forum with such theories every few months. The process is always the same. Start with an idea, then look for evidence to support it, and join the dots with lots of assumptions.

I am reminded of scientists whose strategy for testing a hypothesis is the opposite of this. Start with the theory, then look for every possible way you can think of to disprove it. Only when the hive minds of lots of scientists have pointed out all the possible flaws they can think of, and every step in the hypothesis is tested throughly and all assumptions removed and replaced with replicated evidence, can we start to say this theory has a sound basis.

 

[nataliezzz]

That sounds like a good idea!

Notably there have been studies that have used a Polysomnography in ME/CFS, including the intramural study. There were no findings of relevance. Moreover a subset of those participants even underwent a 6 week trial of CPAP without there being any relevant improvements!

Can you provide a link to the CPAP study in ME/CFS? I would definitely like to look at that. One thing I will try to get into when I go more into depth with this (perhaps on a separate thread) is why not all CPAP treatment is equal (people are often just put on an auto-titrating setting which is designed to eliminate/reduce apneas/hypopneas, not necessarily flow limitation; people are very, very rarely manually titrated in a lab to eliminate flow limitation like Dr. Gold did in his studies of the GWI & fibromyalgia patients), and then there's the issue of many people tolerating/benefiting from BiPAP > CPAP. Yeah, I have a lot lol...

Generally speaking about some of the engagement that might be frustrating for you: I must have seen similar approaches to theories for ME/CFS upwards of 50 times. Bits and pieces taken from here or there with a lot of "presumably". If one is convinced of any idea, one can always accrue evidence from different places to make a story, but that does not make said evidence convicing. In this case it seems to me that an array of different studies have been posted (I only had time to even look at 2 studies somewhat closer and I suspect to look at the full evidence more closely will take anybody several days). This is an array of different studies that are all on somewhat related topics but that all have different results on differing conditions with different criteria and outcome measures and then making causative claims based on different correlations quickly becomes dubious.

I think the following would be helpful to know for people part of the discussion: Are there any results that are consistently replicated across studies (including accounting for all those studies with negative results, some of which will have never been published) and I'm not taking about somewhat related findings, I'm talking about consistent replication? And what is the evidence for those replicated findings being of relevance to ME/CFS beyond there being an overlap of symptoms and how do the negative findings fit into that?

No, we don't have that level of evidence. When I go in and flesh this out in greater detail, I will focus on the evidence I think is there for the connection between UARS/OSAS and fibromyalgia/GWI (as well as other disorders like chronic insomnia). There's no evidence specific to ME/CFS. I just happen to believe that all of these unexplained chronic disorders with high degree of overlap in symptoms (and diagnoses in those affected by them) are likely varying presentations of one underlying disorder, but this is just my personal opinion! Anything I say about the possibility of UARS/OSAS causing ME/CFS is just based on speculation and my personal experience.

 

[Utsikt]

No, we don't have that level of evidence. When I go in and flesh this out in greater detail, I will focus on the evidence I think is there for the connection between UARS/OSAS and fibromyalgia/GWI (as well as other disorders like chronic insomnia). There's no evidence specific to ME/CFS. I just happen to believe that all of these unexplained chronic disorders with high degree of overlap in symptoms (and diagnoses in those affected by them) are likely varying presentations of one underlying disorder, but this is just my personal opinion! Anything I say about the possibility of UARS/OSAS causing ME/CFS is just based on speculation and my personal experience.

Thank you for explaining that.

In that case, the title of the thread is misleading. The same with the current intro to your first post:

I think the evidence supports upper airway resistance syndrome (UARS) as a common underlying cause for many "chronic complex illnesses" (ME/CFS, fibromyalgia, Gulf War illness, etc.)

Here, you are saying that the evidence supports UARS as a cause of ME/CFS. But you now say that there is no evidence that ME/CFS is caused by UARS.

 

[nataliezzz]

Thank you for explaining that.

In that case, the title of the thread is misleading. The same with the current intro to your first post:

Here, you are saying that the evidence supports UARS as a cause of ME/CFS. But you now say that there is no evidence that ME/CFS is caused by UARS.

True. I will edit the post to reflect that. The title can probably remain since it has a ? and it is under the "Possible causes and predisposing factor discussion" forum (I'm not even sure I can change the title)

 

[Utsikt]

True. I will edit the post to reflect that. The title can probably remain since it has a ? and it is under the "Possible causes and predisposing factor discussion" forum (I'm not even sure I can change the title)

If your aim to explore if it is/could be the underlying cause of all chronic complex illnesses, sure. But that is in itself not a very useful concept because all chronic illnesses are complex in one way or another, so it essentially means «all chronic illnesses».

So it reads like «UARS: the unifying theory of everything?» (a bit of hyperbole)

The mods can change the title for you if you decide to do that. It’s probably easiest to use the «contact moderator» button on the first post.

 

[nataliezzz]

If your aim to explore if it is/could be the underlying cause of all chronic complex illnesses, sure. But that is in itself not a very useful concept because all chronic illnesses are complex in one way or another, so it essentially means «all chronic illnesses».

So it reads like «UARS: the unifying theory of everything?» (a bit of hyperbole)

The mods can change the title for you if you decide to do that. It’s probably easiest to use the «contact moderator» button on the first post.

It looks like I can change the title. Can you suggest an appropriate title? I want it to reflect that the discussion is about the theory that UARS could be a common underlying cause for these disorders (I'm not sure what else to call them besides "chronic complex illnesses" - unexplained chronic illnesses?)

 

[Utsikt]

It looks like I can change the title. Can you suggest an appropriate title? I want it to reflect that the discussion is about the theory that UARS could be a common underlying cause for these disorders (I'm not sure what else to call them besides "chronic complex illnesses" - unexplained chronic illnesses?)

I’m not quite sure.

From my perspective, it can look like you’re a bit too focused on «the theory» because there are so many leaps of faith in it. You’re essentially asking: could this be true, if we assume this is true, and this, and that, and also this. The discussion you want to have looks like it is too many degrees removed from the actual evidence.

 

[nataliezzz]

I’m not quite sure.

From my perspective, it can look like you’re a bit too focused on «the theory» because there are so many leaps of faith in it. You’re essentially asking: could this be true, if we assume this is true, and this, and that, and also this.

Yes, exactly, I want to discuss the evidence re: the theory. The evidence may be from studies with small sample sizes, but statistically significant findings are not invalid simply because they are from small sample sized studies. This is how science generally begins; with an observation (e.g. a sleep doctor noticing alpha-delta sleep - an objective finding associated with fibromyalgia - and frequent complaints of "functional somatic syndrome" symptoms in UARS patients without a fibromyalgia diagnosis) and some small studies with statistically significant findings (e.g. 18 GWI patients having 96%±5 of their breaths flow limited while 11 age/BMI-matched asymptomatic Gulf War vets had 36±25% of their breaths flow limited [p <.0001] and when treated with CPAP titrated to eliminate flow limitation, experiencing improvements in the symptoms of GWI that correlated with an objective finding [decreased sleep stage shifts]. Or a statistically significant inverse correlation between the AHI and the prevalence of alpha-delta sleep, sleep-onset insomnia, headaches & IBS in consecutively evaluated sleep-disordered breathing patients).

And a case report of disappearance of alpha-delta sleep (again, an objective finding associated with fibromyalgia) along with resolution of fibromyalgia symptoms when the patient was treated for sleep-disordered breathing with a mandibular advancement device.

You are free to write these findings off as irrelevant because they came from small sample sized studies and a case report. I'm here to discuss the possibility of how they may relate to the proposed theory of sensitization/stress response to inspiratory flow limitation during sleep causing symptoms like fatigue, body pain, and insomnia in sleep-disordered breathing patients with those who are interested in having that discussion.

I'll keep the title as it is (since it has the ? in it I think it makes it clear I'm not asserting it as a fact). Sorry for going beyond what the evidence supports in my original statements in the post. I have now edited it accordingly.

Again, going to try to take a break from this for several days (maybe a week); check back then if you are interested in discussing the topic and hopefully I will have something better up than what I have now.

ETA: It will definitely take me more than several days to add all the information here with multiple posts on sub-topics etc.

CHECK BACK ON 8/1 IF YOU ARE INTERESTED IN UARS.

-Natalie