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

How would leave a patient with minor UARS who's predominant ME/CFS symptom is PEM/PENE with delayed 48 - 72 onset plus the usual OI/POTs?
@SteveFifield I think you saw my informal case report above about the improvement in my orthostatic intolerance/POTS on BiPAP. I think this study provides good evidence for UARS being able to cause OI (all of the patients in the study had orthostatic hypotension [OH], but as you may know, it's been suggested that OH and POTS may both be responses to the same underlying problem [e.g. hypovolemia], and I and others have experienced both, even fluctuating within short time frames - e.g. I remember one time I was doing NASA lean tests on myself off meds for my ME/CFS doctor and I had hyperPOTS one day when I was doing more activity/"running on adrenaline" and OH literally the next day when in PEM)

How might PEM possibly be related to UARS? We don't have any evidence on that, but IMO it fits with the proposed theory of UARS being a stress response disorder of the limbic system. Aspects of PEM like the following fit nicely with that IMO: PEM severity does not necessarily correspond to actual energy expenditure, you can end up in an identical state of PEM from physical/cognitive/emotional/social exertion or even sensory input alone, PEM can be prevented/reduced for many patients by taking CNS depressants like benzos/DXM ahead of exertion (Vicodin - also a CNS depressant - works the same for me).
Feels like it's a co-morbity or possibly enhances susceptibility, just as appears to be the case for EDS and hEDS.
I think UARS is the cause of my ME/CFS. I find that much more plausible than that I have two disorders with all of these overlapping symptoms (the only core symptom of ME/CFS there's no link to in the UARS lit is PEM: unrefreshing sleep, fatigue, and cognitive dysfunction are well-recognized symptoms of UARS, and I think there's good evidence for myalgia and OI too). Many people, myself included, did not have PEM when our illness first started (and I don't think we developed a new/separate illness when PEM emerged); whatever ME/CFS is, I think you can have a form of it without PEM (yes, I know, by definition it's not ME/CFS then...)

All of my symptoms improved quite quickly when I got on BiPAP: my muscle pain was about 50% improved by the end of the first week, and ~3 weeks in I stopped the bupropion and my acute OI symptoms on standing were resolved.

Some might say the improvement in my symptoms was what was being caused by UARS, and everything left over is ME/CFS. I'm more inclined to believe that whatever was causing my symptoms before (a stress response to inspiratory flow limitation during sleep, according to the UARS theory), BiPAP is activating the same pathway, just to a lesser degree, since literally all of my ME/CFS symptoms - including PEM - improved on BiPAP (and I think this fits with the olfactory nerve hypothesis of UARS):
I think the partial (~35-50%) improvement that most "chronic complex illness" patients experience on properly titrated PAP fits with the olfactory nerve - limbic system sensitization hypothesis (the olfactory nerve has been shown to have mechanosensory properties, sensing changes in nasal airflow/pressure - see my OP), because if our limbic systems have become sensitized to changes in nasal airflow/pressure outside of "normal" breathing (i.e. IFL) during sleep, then we are probably going to react to having pressurized air blown up our noses as a stressor too lol.

I have a BlueSky thread on this topic.

Here is another study (The effects of nasal anesthesia on breathing during sleep) that supports the role of olfactory mechanosensory input to the brain: nasal anesthesia during sleep resulted in a fourfold increase in apneas (equally distributed between central and obstructive); the increase in central apneas suggests that olfactory mechanosensory input to the limbic system is involved in regulation/rhythmicity of breathing (central apnea = brain fails to send signals telling you to breathe). The increase in obstructive apneas could be because nasal anesthesia disrupts the nasal-respiratory reflex and suppresses the activity of muscles in the upper airway.
 
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There will be a "clinician roundtable" talk by Dr. Gold hosted by Renegade Research on 3/6 at 11am CST - the talk will be recorded and available on YouTube afterwards. His talk will focus on the evidence from his research for fatigue as a symptom of UARS/OSAS and how it can be improved by CPAP, and at the end he will discuss his clinical experience with 100 Long COVID patients he has seen referred by Stony Brook's Post-COVID clinic (not specifically for suspected sleep-disordered breathing).

Anyone can attend; registration here:

https://us06web.zoom.us/webinar/register/4417709293491/WN_c9VNLoTCTm-ExhCCw2wiCw#/registration

Note: the time was wrong in the original Twitter announcement, it is at NOON ET, not 1pm ET (EDIT, it has now been corrected):

 
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Here is the talk by Dr. Gold hosted by Renegade Research. Dr. John Haughton (medical director, Renegade Research), Dr. Bela Chheda (Center for Complex Diseases), Dr. Anil Rama (private practice, Sleep and Brain), and Dr. Kishan Tarpara (sleep and autonomic dysfunction clinics, Vanderbilt) were panelists.

He didn't actually get through his full talk/to the part about the Long COVID patients - there may be a part 2 in a few months.

 
Here is an updated version of the AI summary of the UARS theory with links (most of the links are to S4ME threads, but a few are to Bluesky threads of mine). I have also included an infographic at the end that I made to help others understand the theory and a YouTube talk by Dr. Denise Dewald on inspiratory flow limitation. At some point over the next several months, I am going to make a "UARS Theory - Take 2" thread on S4ME, perhaps using this AI summary as a template/starting point (but I'm going to try hard to make it readable/understandable for people), so please let me know if you have any suggestions or there is any part of the theory that seems particularly unclear.

Abstract

This document outlines the theory, primarily developed by Dr. Avram Gold (medical director of Stony Brook University Sleep Disorders Center), that many "complex chronic illnesses"—including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), fibromyalgia (FM), and Gulf War Illness (GWI)—are driven by a physiological stress response in the central nervous system (CNS) to sleep-disordered breathing. The core of this theory posits that the brain's limbic system becomes sensitized to inspiratory flow limitation (IFL) during sleep following a significant physiological or psychological stressor (e.g., infection, trauma, surgery, chemical exposure, etc.). This sensitization transforms previously benign breathing resistance into a chronic, pathological stressor that perpetuates symptoms like fatigue, pain, cognitive dysfunction, insomnia and autonomic instability. This framework challenges the conventional understanding of sleep-disordered breathing by shifting the focus from apnea-hypopnea events and arousals to the neurological response to IFL. The evidence presented, drawn from clinical studies, case reports, and population data, suggests this mechanism is a factual cause for at least some cases of fibromyalgia and GWI, and warrants serious investigation for ME/CFS and other related conditions.



A central tenet of this hypothesis is that the current diagnostic paradigm for sleep-disordered breathing (SDB) is flawed and overlooks the primary driver of symptoms in many patients.
  • The Inadequacy of the Apnea-Hypopnea Index (AHI): The AHI, which measures complete and partial cessations of breathing, correlates poorly with symptoms like fatigue and sleepiness. This is underscored by the fact that over 50% of individuals with diagnosed Obstructive Sleep Apnea (OSA, AHI ≥5) are asymptomatic. If apneas, hypopneas, and the resulting arousals were the primary cause of symptoms, a stronger correlation would be expected.
  • The Central Role of Inspiratory Flow Limitation (IFL): The hypothesis proposes that the crucial pathological event is not necessarily apnea but IFL—the subtle, often inaudible "fluttering" (rapid opening and closing) of the upper airway (pharynx) during inhalation. This includes snoring but also non-audible fluttering. Large-scale epidemiological data supports this, showing that snoring (a proxy for IFL) - not AHI - is the factor most strongly associated with excessive daytime sleepiness* (most people with OSA snore). Two large sample size studies showed that increased IFL was associated with excessive daytime sleepiness* and psychomotor vigilance task lapses. However, IFL alone is not enough to cause symptoms; one study comparing UARS patients to matched controls found that even controls rigorously screened to be free of any medical conditions, any chronic fatigue/pain/etc. can have high levels of IFL.
*A recent study identified that the Epworth Sleepiness Scale - which is used to assess daytime sleepiness - actually measures an uninterpretable mix of objective sleepiness and fatigue.


Dr. Gold's theory is not that inspiratory flow limitation itself causes these illnesses, but that the brain's reaction to it does.
  • A Two-Step Process:
    1. Pre-existing Condition: An individual has a baseline level of IFL during sleep, which their brain does not perceive as a threat.
    2. Sensitizing Event: A significant stressor—such as an infection, physical trauma, surgery, chemical exposure, or severe psychological stress—activates the body's primary stress pathway, the hypothalamic-pituitary-adrenal (HPA) axis.
  • The Sensitization Mechanism: This HPA axis activation leads to the sensitization of the limbic system (the brain's emotional and stress-response center). The hypothesis suggests this may occur via the olfactory nerve, which senses changes in nasal airflow and pressure and has direct connections to the limbic system (during IFL there are prolonged decreases in nasal pressure compared to non-flow-limited breathing).
  • Pathological Consequence: Post-sensitization, the brain begins to interpret the previously ignored IFL as a noxious, threatening stimulus. This triggers a recurring, nightly stress response that drives the diverse symptoms of chronic illness, from profound fatigue and body-wide pain to autonomic dysfunction and cognitive impairment.
    • A study by Dr. Gold of consecutive SDB patients at a sleep clinic found that there was a statistically significant inverse relationship between AHI and symptoms like sleep-onset insomnia, headaches, and IBS (as well as alpha-delta sleep), with UARS patients having the highest prevalence of these symptoms and patients with moderate-severe OSA having the lowest prevalence. This could be explained by the fact that as frequency of apneas (complete/near-complete cessation of airflow) increases, exposure to IFL decreases.


Multiple lines of evidence support the connection between IFL and complex chronic illnesses.

A controlled study of Gulf War illness (GWI) patients provides the strongest direct evidence for this theory:
  • Objective Sleep Findings: 18 veterans with GWI were compared to 11 asymptomatic, age- and BMI-matched Gulf War veterans. The GWI group experienced IFL during 96% ± 5% of their sleep, whereas the control group experienced it only 36% ± 25% of the time. This difference was highly statistically significant (p<0.0001).
  • Treatment Efficacy: When treated with therapeutic CPAP, the GWI patients experienced significant improvements in fatigue, pain, and cognitive function. This subjective improvement was directly correlated with an objective finding: a decrease in sleep stage shifts. The control group, which received sham CPAP, did not improve and in fact worsened slightly.
The link to fibromyalgia is supported by physiological data, prevalence studies, and case reports:
  • Increased Airway Collapsibility: A study by Dr. Gold found that female fibromyalgia patients had a more collapsible upper airway (comparable to those of female UARS patients), measured by the pharyngeal critical closing pressure (Pcrit). This anatomical predisposition provides a physical basis for increased IFL.
  • High Prevalence of OSA in fibromyalgia: One study found that when polysomnography was offered to consecutive female fibromyalgia patients in a rheumatology clinic, 100% of the 23 who agreed to testing had OSA, with 83% having an AHI >15. This prevalence is drastically higher than the ~17% found in the general female population.
  • High Prevalence of fibromyalgia in OSA: A meta-analysis found a 21% prevalence of fibromyalgia in OSA patients (vs. a meta-analysis that found a 1.78% prevalence of fibromyalgia in the general population).
  • Symptom Resolution with Treatment: At least two independent case reports from different countries document the near-complete resolution of severe, long-standing fibromyalgia symptoms following treatment for SDB (one with CPAP, one with a mandibular advancement device). Critically, one report documented that alpha-delta sleep—an objective biomarker associated with fibromyalgia—disappeared along with the patient's symptoms after treatment.
Orthostatic Intolerance/Dysautonomia: The theory may also explain the different autonomic presentations between UARS and classic OSA:
  • UARS and Hypotension: One study found that 93 out of 400 consecutive UARS patients at Stanford had low blood pressure, and all 15 who underwent tilt-table testing had orthostatic hypotension. In contrast, only 2 out of 3,369 OSA patients had low blood pressure.
  • Mechanism of Divergence: It is hypothesized that the prolonged, sub-atmospheric pressure in the nasal airway during IFL (characteristic of UARS) leads to sympathetic nerve dysfunction and hypotension. One study found parasympathetic hyperactivation in response to IFL in UARS patients. Conversely, the recurrent hypoxemia seen in classic OSA triggers repetitive pressor responses, eventually leading to daytime hypertension.

This hypothesis provides a unifying framework that can explain many puzzling aspects of ME/CFS and related illnesses.
  • The Hypermobility Connection: It can explain why people with hypermobility are more likely to develop ME/CFS, fibromyalgia, and related disorders (more lax connective tissue = more collapsible upper airway). A meta-analysis found that patients with EDS (all types, including hypermobile) and Marfan syndrome were ~6 times more likely to have OSA than the general population. A parallel cohort study of EDS patients (various types, including hypermobile) and matched controls found that the impact of EDS on AHI was comparable to that of a 11 kg/m2 BMI gain.
  • Diverse Triggers: It accounts for how any type of severe stressor—not just infections—can trigger an identical syndrome by focusing on HPA axis activation as the common pathway to sensitization.
  • Post-Exertional Malaise (PEM): PEM can be understood as a manifestation of a dysfunctional CNS stress response. Exertion (physical, cognitive, or emotional) acts as an additional stressor on an already over-taxed system, leading to a crash. This aligns with observations that CNS depressants (e.g., benzodiazepines) can sometimes prevent or reduce PEM.
  • Partial Efficacy of Treatment: It explains why treatments like CPAP/BiPAP often provide significant (~35-50%) but incomplete relief. While these therapies reduce IFL, the device itself (pressure, mask) can act as a new stressor on a highly sensitized nervous system, preventing full recovery. More curative treatments may involve surgery or, for some, nervous system regulation techniques that aim to desensitize the stress response itself.
"I think of flow limitation as a really important thing to look at when you're looking at a PSG [polysomnogram] and deciding is this a normal study or not? Spoiler alert: just about everyone who's referred for a sleep complaint does not have a normal study. After thousands of sleep studies, I have yet to see an actual normal study [i.e. no flow limitation] in someone who was symptomatic. The only normal studies I've seen are people who are referred because they needed a sleep study for bariatric surgery or because they work in transportation...Oh, and there was one guy who was sent by his cardiologist because he developed atrial fibrillation and so of course he needed a sleep study, but he had rheumatic valvular disease." - Denise Dewald, MD
Physiology/physics of IFL (and Pcrit) is discussed at 5:45.



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