Discussion in 'BioMedical ME/CFS News' started by Andy, Feb 13, 2021.
Open access, https://journals.viamedica.pl/advances_in_respiratory_medicine/article/view/70297
Positives are that two day CPET was used to understand what was going on for this young person and there was knowledge of PEM as a defining characteristic of CFS. It was acknowledged that the CPET results did not fit the pattern of CFS. Rapid, disordered breathing was identified as the cause of the young person's fatigue, and attention to this issue seems to have fixed the symptoms. So, perhaps some expertise is building up in Slovakia around CPET, ME/CFS and PEM.
They suggest that the person meets CFS criteria (it isn't specified what criteria) without any evidence of PEM.
there doesn't seem to be an acknowledgement of the risks of CPET for people with ME/CFS, and there seemed to be a possibly undue authority given to this testing.
Perhaps something was lost in translation, but this didn't read well:
Interesting that POTS reportedly resolved with slower breathing. Also interesting to see that PEM is said to occur after spiritual exertion (as well as after physical, mental and emotional exertion).
It seems strange to me that the doctors would not have observed and recognised the signs of hyperventilation and disordered breathing without having to go through this lengthy investigative process. And I don't understand how the symptoms could be confused with ME/CFS, especially the absence of PEM. It seemed to be a child suffering from lightheadedness, POTS symptoms, and tiredness. That's not ME/CFS.
Yes, I do wonder how much basis this idea of 'faulty breathing' without any physiological basis has - that is, 'faulty breathing' that can be fixed just with behavioural advice. Butyeko is mentioned as one approach to correcting faulty breathing, but I had the impression there wasn't much evidence for that therapy. Pilates is also mentioned - I can't recall much that would have permanently corrected 'faulty breathing' in the pilates I have done.
A case study of one isn't very convincing of course - perhaps time was the main healer.
But regardless, I think it's interesting that there is a team actually looking at exercise physiology with two day CPET for people presenting with the symptom of chronic fatigue in Slovakia.
A post has been moved to its own thread here:
LongCovidPhysio - Jessica "Breathing Pattern Disorders", video 2021
I have been practicing diaphragmatic breathing for 12 years due to anxiety and still developed me/cfs and pots 2 years back. And it still doesn't help in reducing any symptoms. IMO not much attention should be given to these n=1 case reports.
I suffered from severe hyperventilation syndrome and "disordered breathing" about 15 years ago. I'd also gone through a phase of this about 40 years ago, but the first phase disappeared on its own.
I was told that hyperventilating caused the symptoms I had because it reduces carbon dioxide levels in the blood/body. The only symptoms I remember now are the feelings of extreme air hunger and extreme breathlessness, plus lung and rib pain from my desperate (and misguided) attempts to overcome what was happening. I was taught breathing exercises that helped me enormously. I've never managed to eliminate the problem of hyperventilating permanently, but it is something which is now under my control. If the problem restarts I do my breathing exercises again. I wasn't given any psychotherapy, which I think would have been overkill, I was just taught the exercises.
I don't believe from my n=1 experience that ME/CFS and hyperventilation are related, although it wouldn't surprise me if the symptoms that arise from hyperventilating were mistaken for ME/CFS by doctors who didn't know anything about ME/CFS or disordered breathing. But I don't believe that people with ME/CFS are completely exempt from developing hyperventilation syndrome either. Personally, I think the conditions are independent of each other, and people could end up with one or the other or both or neither. But unlike ME/CFS hyperventilation syndrome can be helped with the right training. (It took about 20 - 30 minutes for my first "lesson" then a follow up of less than 10 minutes. I was then capable of dealing with it myself whenever the need arises.)
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