Brainstem volume changes in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID patients (Thapaliya et al, 2023)

Are respiratory symptoms common in ME/CFS?

From the article above:

"In the current study, the larger these brainstem regions were in volume, the more likely patients were to complain of breathing difficulties or pain in questionnaires.

"Therefore," researchers from Griffith University write, "brainstem dysfunction may contribute to the respiratory-related symptoms in ME/CFS and long COVID."

 

Breathing issues are for me a feature of my PEM.

 

There is a thread about breathing issues/changes on the forum. When looking through my medical records, I reported breathing abnormalities many years ago to my GP. It was probably brushed off as being caused by anxiety.

I think the problem is pwME aren’t seen by respiratory services. When I eventually saw an LC OT, she said I met the criteria for breathing pattern dysfunction. No one knows how long I actually had the problem.

It’s very hard for the person with the issue to notice as the brain is just not communicating with the lungs properly. There are different causes, but the OT explained when it's brain mediated, the breathing feels natural and appears effortless. They said if the brain was working normally and you were to breathe incorrectly for long periods, you would begin to experience significant discomfort, hyperventilate, etc.


[Edited to add information]

 

I feel out of breath during a viral infection but I guess that's different from breathing issues.

 

I was told it happens with illness but then the breathing pattern returns to normal with recovery. But what they are seeing in LC is that the abnormal breathing pattern remains following expected recovery. The additional explanation was the abnormal breathing contributes towards the symptoms experienced with exertion. They never said how it contributes.

 

I started getting breathless just before I was diagnosed with cancer. Then it seemed to resolve a bit. Until Covid it would be "just" breathless on stairs. Now it is bouts at rest and walking slowly. My asthma seems to have come back after a long time Also other chest problems. . Waiting for an assessment at my local Asthma clinic and it's been a while now.

The Respiratory Physio I saw at the LC Clinic (another story for another time) seems pretty desperate to diagnose everyone with dysfunctional breathing and to give them breathing exercises. I explained to her that this was not my first time with a breathing Physio and that I knew perfectly well how to breath and could demonstrate it.

What I learned from the clinic and this physio (and I am seeing it on the LC Facebook forums) is that breathing problems is being blamed on the person using the wrong muscles to breath entirely and that they are being fobbed off with exercises.

There is no testing or evidence for this approach. They aren't connecting patients to machines and testing anything (as per the infamous Dr Nixon of Charing Cross all those years ago)

I was able to articulate and demonstrate the other chest problems I have had since Covid so got a letter to my GP asking him to follow this up... Fat lot of use this will do me.

 

I didn't even know they were using 7 Tesla scanners in humans now. When I was in college, I recall being told that this stuff was for rats only.

https://pubs.rsna.org/doi/pdf/10.1148/radiol.2019182742

Damn.

 

I experience all of those things anyway, so might as well sign me up for 7-T MRI studies! Lol

 

When I am in PEM I often wake up gasping for air as if I had stopped breathing during my sleep. I did a sleep apnea test but found nothing.