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@Jonathan Edwards Some googling told me that FFI results in an accumulation of misfolded cellular prion proteins (PrPc). I found a couple of papers that mention PrPc, ME/CFS and LC. I have no idea if they contribute anything, and it’s way beyond my understanding...

Thank you! I would not be able to do that. I get PEM eventually. I believe the most common symptoms are, they usually come in this order: Tinnitus worsens a lot Legs feeling heavy Body feeling heavy Overheating torso Head gets slower Worse sleep Twitching muscles and invisible internal shaking...

If, in theory, you could lie in bed and work, the limiting factor would be concentration and/or mental fatigue? I’m just trying to understand your bottle necks.

Could you work 100 % from home with something cognitive?

My legs are the first to notice cognitive over-exertion, other than my head. They get really heavy and sluggish.

That was my initial thought. But then I thought that «Jonathan would probably say that we don’t know if it’s fully contained in the brain», so I went with body. You and S4ME have made me question my entire reality. Which is a good thing!

I think it’s worth looking at what very severe patients say give the PEM. Idk where to find any info about it, though.

Our emotions only exist inside our body. As far as the brain goes, it’s kind of like an analog computer (the software aanalogy is wrong). I don’t think the brain cares about what it’s being used for - thoughts and emotions are pretty much the same in that regard.

Abstract The dominant model of disease today is biomedical, and it leaves no room within its framework for the social, psychological, and behavioral dimensions of illness. A biopsychosocial model is proposed that provides a blueprint for research, a framework for teaching, and a design for...

@mariovitali in case you missed this. Idk if it’s of any relevance.

I can’t comment on their methods or the validity of their statements, but could this be usefull for finding a biomarker for ME/CFS? Does anyone know how this compares to the methods of DecodeME and BioQuest?

No, it was not supported if there was a high risk of bias. If the data is garbage, the support is garbage.

No, future trails are not warranted if the treatment was ineffective!

It isn’t really a model, it’s a conceptual framework at best: No empirical basis, just «this is how I believe things are connected» No framework to prove causality It’s an opinion piece, really, and everyone accepted it as truth.

In case it has not been said: the Norwegian MEA has over 7000 members. That’s about 0.13 % of the population. Idk why there are so many members relative the the UK, but my first guess would be that they are very non-BPS-oriented, and they’ve managed to no be tainted by the lobby/mafia.

I’d go as far as describing it as Orwellian:

Crohn’s disease and ulcerative colitis, thanks! Although I thought Crohn’s was far worse than IBS?

Joining this forum has been the most humbling week of my life for this exact reason. I just spoke to my dad. He said «you don’t have the all of the answers». He firmly believes that everyone are a bit correct. So we should listen to everyone. He refuses to believe that most people are...

Does anyone have access? How did they define a «flare»? In my experience IBS was pretty constantly terrible when I struggled with it. I can’t remember going more than a day or two without issues, 7 weeks would have been a dream.

He’s also involved in other research on MUPS: https://www.su.se/english/research/research-projects/emotion-focused-digital-interventions-for-patients-with-medically-unexplained-symptoms Seems like a lost cause. Drank the kool-aid.