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

[nataliezzz]

It's UARS! Okay what's the treatment then? Surely a CPAP/BIPAP/whateverPAP? No? Oh.

Hi, I just wanted to say I definitely think that CPAP/BiPAP is the mainstay treatment for UARS, just that it does not appear to be a cure for most UARS patients. If you are sleeping nightly (through most of the night) with PAP that is properly titrated to resolve/significantly reduce inspiratory flow limitation for a few weeks and you are not feeling better, then you likely do not have UARS. However, "properly titrated..." almost never happens (supposedly the auto-titrating setting algorithms are targeted at flow limitation in addition to apneas/hypopneas, but from my time on UARS forums I'm not convinced that they actually do a good job with this). This is something that patients will just have to verify themselves for the moment - see my advice (Bluesky thread link) on how to do this.

In fact, spending a few weeks sleeping with properly titrated PAP is (IMO) the only way to know whether you actually have UARS/OSAS (there are other treatment options like a mandibular advancement device but this often doesn't fully resolve sleep-disordered breathing/inspiratory flow limitation and you would need to do a follow-up sleep study wearing it to confirm if it does). You can do a sleep study and get a diagnosis of OSA/UARS based on your AHI or RDI, but these factors don't actually correlate with symptoms/are not the cause of symptoms (at least until you get into the more severe OSA range), so the only way to confirm a diagnosis (IMO) is to try treating the sleep-disordered breathing and see if your symptoms improve.

Some people just don't tolerate PAP though, unfortunately. I didn't until I had a nasomaxillary/palate expansion procedure (I'm guessing just because my nasal airways were so narrow):

I was unable to tolerate CPAP or BiPAP prior to getting a nasomaxillary expansion surgery (EASE with Dr. Kasey Li) - I could fall asleep with it but could never stay asleep with it for more than 2-3 hours (I would wake up and have difficulty falling back asleep and end up just taking it off); immediately following the surgery I was able to sleep through the night on BiPAP. There was only ~1mm of expansion from the surgery itself; the rest of the expansion took place slowly over the course of ~9 months (photos of pre-surgery and end of expansion below - now I have braces to close the gaps between my teeth and correct the changes to my bite). I had a very narrow/high-arched palate, which corresponds to narrow nasal airways (since the roof of your mouth is the floor of your nose).

 

[nataliezzz]

Studies relevant to the olfactory nerve - limbic system sensitization hypothesis of UARS (I'm going to make a thread discussing the hypothesis later, but this is just to share with people outside of S4ME for the moment):

• The effects of nasal anesthesia on breathing during sleep, 1985, White et al.
• Nasal Respiration Entrains Human Limbic Oscillations and Modulates Cognitive Function, 2016, Zelano et al.
• Ultra-slow mechanical stimulation of olfactory epithelium modulates consciousness by slowing cerebral rhythms in humans, 2018, Piarulli et al.
• Activating effect of nasal and oral hyperventilation on epileptic electrographic phenomena: reflex mechanisms of nasal origin, 1981, Servít et al.
• Dual functions of mammalian olfactory sensory neurons as odor detectors and mechanical sensors, 2007, Grosmaitre et al.
• Some evidence for a mechanical receptor in olfactory function, 1961, Ueki et al.

 

[SteveFifield]

I appreciate your tenacity @nataliezzz.
I've learnt a lot from reading this discussion and videos, such as how breathing efficiency can deteriorate to the point that SpO2 can dip at night more for people with UARS than not.
But it's chicken and egg when we have poor & loose diagnostic tests for UARS and EDS / hEDS and even POTS (the cutoff limit is quite arbitraty) and even those tests aren't routinely used in any situation. They aren't tested for because little can be done about them, but I feel as if they are clues being left scattered everywhere and not enough attention paid to them.

I do remember that my first symptoms of lacking available energy were attributed to lack of restorative sleep. Then in 2013 (from my Amazon history lol) I read "Steven Y. Park MD Sleep, Interrupted: A physician reveals the #1 reason why so many of us are sick and tired" and discovered what UARS was for the first time - And no UK respiratory specialists had even heard of it.
My 3 x Polysomnogram at London Sleep Clinic revealed "Alpha Wave Intrusion" which I understand is now associated with Fibromyalgia and ME.

At this time I hadn't met anyone who even suggested I might have ME, but I hadn't noticed at that time that it wasn't just lack of restorative sleep, but that I also had temperature dysregulation and some OI issues too.
My ME diagnosis wasn't confirmed until 2021 by which time I recognised the classic PEM symptoms had been going on for years, but I didn't realise how abnormal and defining they were.
So I'm still listening, and want to encourage rather than dismiss this train of thought, as if Sleep Disordered Breathing (associated with hEDS) could be a trigger for ME (or something indistinguishable from it), it may be that all roads lead do to Rome.
If so, each road is a clue that might help solve the whole problem of where and exactly what Rome is, in this case.