Article Independent IE: Doctors urged to look out for chronic fatigue syndrome in long Covid patients (#Physios4ME)

@Solstice were you part of the PACE trial?

 

No, I followed a course of CBT/GET at Dutch recovery center het Roessingh in 2005.

 

It depends what is meant by breathing "exercises". If they mean just focussing on allowing diaphragm to fully expand - belly breathing (rather than 'chest' breathing), and observing the breath in a non judgemental way (ie not trying to make it faster/slower etc, just letting it be what it is...)

i do that regularly & find that tremendously helpful for calming down if i'm adrenalined up & my sympathetic nervous system has gone into fight/flight mode after something stressful. It helps my HR go back to normal & parasympathetic kick in. That might be what they mean by 'a positive effect on the nervous system'?

I also find it very helpful to help me pace. Its a couple of moments to allow myself to kind of reconnect & check in with how i'm actually feeling after i've been very distracted & 'into' something - which i tend to do when im wired & end up overdoing it because i miss the signals to rest.

But its silly & vague to present it as some kind of 'treatment'.

 

Breathing as a treatment for ME is a thing, recommended by some familiar names (Lapp, Cheney ... ):

https://www.healthrising.org/forums...hronic-fatigue-syndrome-and-fibromyalgia.495/

I thought I'd better give it a go about a year ago so downloaded an app and did daily breathing exercises. I think I kept it up for a few weeks, but didn't notice any difference and got bored so stopped. I'm not entirely convinced of the benefits of "calming down" to be honest.

 

For someone bed-bound or even just housebound, the likelihood is that most of the time they are pretty calm to start with.

 

Breathing exercises are used in anxiety treatment and can have a calming effect.

My daughter benefitted from these when school was horrendous.

With ME she simply can't do breathing exercises. She can't seem to expand her chest.

My aunt can't do much re breathing either ( she's bedbound) - it simply knocks too much out of her . She did yoga in her youth and is well aware of the benefits but simply dosnt seem viable now.

 

Thanks for this @TiredSam

 

my bolding
Yeah i cant be doing with the kinds of breathing 'exercises' in the link. I didnt try them all, but in the past have tired Buteyko & alternate nostril breathing with yoga. They both made me feel anxious & worked up. I dont like things that make me try to 'change' my breathing. Its like trying to change one's thoughts, it just turns into a wrestle, a fight. For me anyway. And makes me think 'oh just sod off'.

I prefer to just observe my breathing without judgement, & let it be as it is... a la mindfulness i guess. When i do that, when i allow my body to breathe as it wants, but notice/observe it without thinking 'its too fast/slow/shallow/whatever', i experience a natural slowing & settling, I breathe as deeply as my body needs at that moment & allow it to find it's own rhythm. I find that is the best way for me to become peaceful. Same with my thinking and my feelings.

I dont really like the notion of tryig to 'calm down'. The very act of trying is counter productive & i find the notion of 'calm down' a bit patronising sometimes. I just think 'oh bugger off i'm upset/worked up for a reason'. But i do enjoy cultivating as much peace as i can because life circumstances are very stressful in my world with lots of distressing things going on for much of the time.

edited - to remove last line which didnt make sense

 

Hmmm i'm not sure about that. There isnt any strength to express it but that doesnt mean there isnt a great deal of internal distress at times. Indeed just being in a lot of pain can activate fight/flight.

I'm mainly housebound often bedbound & my life is extremely stressful because of the behavious of others over whom i have no control and cannot get away from. Like noisy neighbours that cause me a lot of pain for example so for me at least just being bedbound doesnt make one calm.

 

I suppose I was thinking of myself, living alone in a detached house on a quiet lane with pretty quiet neighbours. The only environmental stressor generally is when the green across the road is strimmed once a fortnight or every three weeks.

 

How compeletly wonderful. I cannot put into words how much i would give to live in a detached place on a quiet lane.

My life is not calm at all. And it makes it very difficult to pace, because all that adrenaline makes me feel better than i really am & i end up overdoing it a lot, so anything where i can just ground myself & find a bit of internal peace is really valuable, because it allows me to get a better sense of how i am underneath, so i can stop before i go stupidly over my limits

edited to remove possibly identifying info