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Surprisingly for this type of research you would probably still be allowed to write in Norwegian for a thesis or paper, as it is a local population and it could be argued "not relevant to other countries". Could be some interesting points in the thesis :)

Variable/Intermittent in my case, but from starting out at being a very transient thing it can now last for days.

I think the same, no amount of puling help from my dog made any difference to the speed I was able to hold comfortably, if I let him pull me so I walked faster than I was able I would feel miserable, it did not make the walk easier in any way.. (which, on the contrary, it did for my...

Those of you that get "out of breath", do you mean breathing heavily or something similar? Because I don't get that, and would not explain myself as "being out of breath" during these episodes. I remember one incident very well, I had crashed some weeks earlier but was back on my feet and...

I've had a lot of air hunger that last year or so, it started as a not-so-frequent thing that the last few months have gone on for days. It simply feels like I'm not getting enough air, I can breathe fully it just doesn't feel like I get air. I "lucky" to have an episode when I was at my GP and...

There's also (possibly just case) studies on N-Acetyl Cysteine supplementation that have shown positive effects on some.

Unfortunately many have sort of just accepted that you gain weigth on these drugs, and don't bother to help patients to even try to prevent it from happening :( I got so mad reading a recent forskning.no article where the author more or less concluded weight-loss interventions (this case diet...

I've had several experiences where I've sustained an increased heart rate for longer/walked faster and/or longer than usual/carried more than usual in my backpack etc. without triggering PEM. One of the reasons it's so hard to know what actually triggers and what does not. For me now, I look at...

I'd like us to know more about exercise physiology in general, but I'm not sure if it's that exact point where "increased fitness process" occurs it goes wrong for pwME.

Over the summer I've been able to build my upper body strength back to doing push ups (its been years..), of course that ability goes out the window in a heartbeat and I'm starting nearly from scratch a lot of times, but I've definitely been able to improve my fitness in this regard.

Agreed. In the case of MCAD deficiency they now test for it at birth, but if it had not caused children to die who knows if it had been discovered. And why someone did not die during childhood is to my knowledge not known, just that obviously there are some compensatory mechanisms at play.

From Barbara Bakker's work on mitochondrial beta oxidation: She said at a lecture that even if children would die from having this mutation if they experienced a metabolic challenge, they also have found adults with the same mutation who did not show symptoms of the disease and had survived...

Unfortunately, yes. :(

I read the title and wondered if it was them, cool :)

Tanita scales is somewhat known to be unreliable, at least their lower-end models. They measure your body composition by using "bioimpedance", a small electric current is sent through the body, and the resistance it meets is then used to calculate how much fat, muscle (and organs, this is "fat...

I was going to add :rofl: even before I read the asterisk. :rolleyes: In her book "But you don't look ill" the author (who has ME) was told by her doctor that she would recover in ~three years after a postviral onset. Around that time she did start to feel better, got a job, and started living...

Annoyingly I can't get it through my university either. As with the CBT part, here they've changed the study from being on adolescents with CFS to adolescents with CF in the abstract (the music therapy partner has an article on their webpage about the study a few years back where it says they...

Yes. Frustrating :(

As with the CBT study, participants wore acceleromaters for a week. The chronic fatigue positive group had a daily mean of 8710 with an SD of 3872, while the chronic fatigue negative group had a daily average of 9329 with an SD of 3019. They don't write how PEM is measured (I guess the same way...

A bit related to the pyschologization of symptoms in disease. Health care workers during the pandemic have been offered to talk to psychologist, but most actually wanted better work conditions (data collected between january and april, mostly in China)...