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Anyone, anywhere, anytime. I’m tired of the rehab-fetish. The Norwegian study showed that it doesn’t work for ME/CFS, and so many with LC experience PEM.

The Government isn’t going to just hand out money to researchers. They are going to do one of two things: Create a bureaucracy to hand out the money and to check if it’s being used properly. It will only be staffed with incompetent people and the checks will match the research standards of...

IIRC, most of the money was spent on population studies and not on actually researching the virus or the patients. The people in charge did not have any experience from e.g. HIV, mono or ME/CFS.

Yes and yes. I don’t know how much help exactly, though. About 300 NOK py. £21 / €25 / $27 at the current rates. If you’ve got the lowest disability rates, you’re on about 14.000 NOK/month. That’s not enough to rent and eat, especially in larger cities. I have a small apartment, and I pay...

I would love to see the evidence that shows that this is a safe and effective approach for pwPEM. How to make pwPEM crash hard 101. Why can’t they understand that maybe their tools are useless or even harmfull? Find the right tools for the patient, don’t just use your favourites for everyone...

I believe that @Jonathan Edwards recently said something along the lines of: The quantity in the blood is irrelevant because immune cells in the blood are mostly inactive. The active ones are in the tissue and lymph nodes(?) The quality of the immune cells isn’t really a thing because we don’t...

Let’s assume that misfolded proteins are at the heart of this. These are more or less random thoughts: What causes and or drives the misfolding? Can it be multiple drivers? Can misfolded proteins in themselves lead to more misfolded proteins? Are the misfolded proteins a precursor to...

I skimmed some posts. It seems like he goes beyond the evidence regarding e.g. meds and the immune system. He also encourages strict rest for severe patients, and movement without PEM for non-severe. Unfortinately, he also talks about gradually increasing the activity level...

@mariovitali liver

A poll sounds like a good idea. Cognitive efforts reduce my sleep quality and duration.

It’s a rambling paper. They go way beyond the evidence as well. Some «highlight»: Because exercise training is recognized as an important and efficacious treatment option for many patients (1), it is important to understand the degree to which acute exercise influences other debilitating...

This is depressing, because it indicates that the psycho lobby will not stop even if we find a biomarker, and treatments for some patients.

@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.