Sleep-disordered breathing (UARS/OSA) and "complex chronic illnesses" (ME/CFS, fibromyalgia, Gulf War illness, etc.)

Clio said:
It's UARS! Okay what's the treatment then? Surely a CPAP/BIPAP/whateverPAP? No? Oh.
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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):
nataliezzz said:
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).
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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.
 
EndME said:
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!
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Hi, just following up on this old exchange. I can't find anything about a CPAP treatment trial for ME/CFS - not in the intramural study or anywhere else. Of course, if there is one, I'd love to have a look.
 
I want to write down some vague recollections here before I forget them as it was approaching 15 years since I had my PSGs.
At that time, and I don’t think much has changed, UARS wasn’t a recognised condition or even acronym in the UK.
I became aware of it when I was reading Stephen Park’s book (Sleep Interrupted) which was fascinating. I want to write down what I think I recall of his findings:
1) He made no mention of ME as he seemed unfamiliar with it.
2) He mentioned that there were very distinct differences between UARS and Sleep Apnoea.
3) He noted that the SpO2 thresholds used in PSGs were used to diagnose Sleep Apnoea, not UARS, so PSG studies didn’t record SDB unless it met the Sleep Apnoea criteria.
4) He noted that people with Sleep Apnoea would snore and stop breathing with no awareness that anything was wrong. They had no conscious awareness that they had slept badly apart from Extreme Daytime Sleepiness / Fatigue.
5) People with UARS (detected by tiny changes in SpO2 even for short durations) would be unconsciously disturbed and waken much more easily.
6) People with UARS had more arousals into lighter sleep. They would hear and be easily disturbed by their own snoring, which people with Apnoea would sleep solidly through.

So UARS isn’t “Small Apnoea”. It’s totally different. For that reason:
a) He had little success treating UARS with CPAP, as most with UARS wouldn’t tolerate it. They would awaken at a pin drop and having something on their face meant they never fell asleep or were very disturbed by it during brief arousals.
b) His successes were with use of Mandibular Advancement Devices (MADs) that helped move to lower jaw forward to open up the airway enough that nothing else was needed - BUT this wouldn’t work for anyone with a strong overbite, where top teeth overlap lower ones. Pushing jaw forwards just jams lower teeth against top ones and TMJ can result (and is often already present, as natural body behaviour is to thrust the lower jaw when SpO2 drops.
c) UARS almost always resulted from narrow dental arches (as @Natalie also describes)
d) Surgeries that reduced turbinates, changed jaw geometry or widened dental arches often had dramatic effects. But turbinate reduction is usually quite temporary.

Park is/was a sleep surgeon but he only advised surgery in most extreme cases.

I think the major takeaway for me is how huge the difference is between Apnoea and UARS, especially in relation to a patient’s awareness during and after sleep, that something isn’t right.

I mention all of this because it’s taken 15 years before technology advanced enough for me to tolerate daily SpO2 measurement, in the form of an Oura Ring 4, which measured 93% average last night, which is on the lower edges of being acceptable. I’m going to see if more detail is available in the data (e.g. lowest and frequency).
If at some time in the past it was this bad or worse, I can imagine it may have contributed to my brain being in a more constantly aroused and vigilant state when asleep, and why I am always awoken by a dog barking when my partner sleeps solidly through.

I wonder if you are able to sleep through someone else snoring in the same room or if it would disturb your sleep too much / keep you awake? Remember that people who have Apnoea generally sleep right through their own snoring and gagging / choking as if nothing happened, and that definitely isn’t the case for anyone I’ve met who has ME.
 
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nataliezzz said:
Hi, just following up on this old exchange. I can't find anything about a CPAP treatment trial for ME/CFS - not in the intramural study or anywhere else. Of course, if there is one, I'd love to have a look.
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This is the study that people mean when they talk about the intramural study on ME/CFS: https://www.nature.com/articles/s41467-024-45107-3.

This is the relevant quote “None of these individuals noted substantial improvements after a six-week trial of CPAP”.

Hope that helps.
 
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