Here is a follow-up study of 94 UARS patients 4.5 years after they were diagnosed with UARS. Insurance refused to provide CPAP for 90/94 patients. When will doctors help fix this disaster? (I don't blame any individual dr. btw, but individual drs. can help!) 58/n
sciencedirect.com/science/arti...

I'm confident I meet criteria for ME/CFS (& that I have UARS). I've been diagnosed w/ ME/CFS by 3 ME/CFS specialists & 2-day CPET (my results 🔽), tho I don't think 2-day CPET is a reliable diagnostic test after reading this article by @mecfsskeptic.bsky.social: 🧵 1/n
mecfsscience.org/the-biggest-...

Thank you @renzpolster.bsky.social for saying what ppl need to hear about PEM: "I would certainly try to question if we should really distinguish the 'real' PEM...triggered by physical exercise & other forms of PEM. As a patient, I can tell you it's all the same & 1/n
www.youtube.com/watch?v=3Zap...

🧵 with a discussion of the CCI/brainstem compression - ME/CFS connection, including an explanation of how the two most well-documented cases of full recovery from diagnosed ME/CFS following CCI surgery (Jen Brea & Jeff Wood) differed in presentation from the majority of ME/CFS patients. 1/n

🧵 w/ thoughts on why ME/CFS/fibro/etc. patients typically only feel ~35-50% better on PAP. Yes, there's the "stress of sham CPAP" (i.e. the mask on your face, etc.) but if it were just that it seems like we should feel ~90% better (the Gulf War illness pts on sham CPAP only got slightly worse). 1/n

Dr. Gold hypothesizes that the sensitization to inspiratory flow limitation as a stressor is occurring via the olfactory nerve, which senses nasal airflow/pressure and is directly connected to the limbic system. MCS = multiple chemical sensitivity. 🧵 1/4
www.sciencedirect.com/science/arti...

🧵 with my advice on PAP treatment (CPAP/BiPAP/ASV) & other treatment options (MAD/surgeries/etc.) An example of my breathing on CPAP (top) vs. BiPAP (bottom) - I still had inspiratory flow limitation (flattening on top - what we want to eliminate to treat UARS) on CPAP despite a higher pressure. 1/n

HPA axis activation by stress can account for many symptoms in ME/CFS (fatigue, brain fog, pain, IBS, etc.) but it doesn't readily explain orthostatic intolerance (OI)/reduced cerebral blood flow. I think it's likely caused by abnormal ANS responses to inspiratory flow limitation during sleep. 🧵 1/n

Here's a Q for the "brain retraining" folks; if all the symptoms of ME/CFS incl. orthostatic intolerance (OI) are due to (subconscious) fear or stress-related ANS dysfunction alone, why doesn't OI predominate in disorders where fear/stress is primary (panic disorder, agoraphobia, PTSD) > ME/CFS? 1/n

Starting this 🧵 over again to include definitions of OSA/S, apnea-hypopnea index (AHI), etc. so I don't lose people new to the topic. It can be shared with a sleep doctor to try to get them to do a proper evaluation/treatment for UARS actually taking flow limitation (and not just AHI) into account.

The evidence is clear that upper airway resistance syndrome (UARS) can cause fibromyalgia & Gulf War illness & strongly suggests it can cause ME/CFS. Core symptoms of ME/CFS & UARS in the lit overlap except for PEM (I doubt sleep drs. asked UARS pts about PEM). 🧵1/n
researchgate.net/publication/...

🧵 with definitions of AHI & RDI, OSA severity levels, American Academy of Sleep Medicine (AASM) scoring guidelines for apneas, hypopneas, & respiratory effort-related arousals (RERAs), & the history of the concept of UARS & debate over whether or not UARS & OSA(S) are distinct clinical entities. 1/n

🧵 with more info on the sleep-disordered breathing (SDB) - fibromyalgia (FM/FMS) connection, including 2 case reports of dramatic resolution of fibro symptoms from treating OSA (1 CPAP, 1 mandibular advancement device). 1/n
pubmed.ncbi.nlm.nih.gov/17589851/
pmc.ncbi.nlm.nih.gov/articles/PMC...

It was shown back in '99 in the Sleep Heart Health Study (SHHS) that snoring is associated w/ daytime sleepiness independent of OSA (AHI ≥5) & snoring vs. no snoring in AHI <5 was associated w/ a larger 🔼 in sleepiness than mild OSA vs. severe OSA. RDI = AHI here. 1/n
atsjournals.org/doi/10.1164/...

Could PEM be a protective response to perceived over-exertion when the body is under a state of physiological stress? Or the result of impaired adaptation to exertion due to a dysfunctional CNS stress response as hypothesized by @renzpolster.bsky.social? 41/n
www.kinder-verstehen.de/wp-content/u...

The evidence is clear that upper airway resistance syndrome (UARS) can cause fibromyalgia & Gulf War illness & strongly suggests it can cause ME/CFS too. Core sx of ME/CFS & UARS in the lit overlap except for PEM (tho I doubt sleep drs. asked UARS pts about PEM). 1/n
researchgate.net/publication/...

I think that sleep-disordered breathing (SDB) likely plays a role in most chronic insomnia cases. The majority of ppl w/ chronic insomnia in this study were excluded for overt OSA S/Sx/risk factors & all 40 ppl left were still diagnosed w/ SDB! (90% OSA, 10% UARS)
www.thelancet.com/journals/ecl...