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And what about PEM from taking a bath? It doesn’t require more movement, but the stimuli seems to really mess with every single system.

Maybe the different responses to different types of exertion is something we should try to highlight in a future fact sheet? Idk if there are any studies on it, but it should certainly be included in the next PEM-studies, and probably all exercise studies. I also believe that there might be...

I would be willing to bet that ME/CFS patients need more care from close family than most MS and Parkinson patients. Due to: less help and lower FC. From the Norwegian ME Association (p.37) - time (hours/week) spent being a carer. From the top: very severe; severe; severe - moderate...

Don’t quote me on this, but I believe that there’s only one national fee. I don’t know if it’s distributed based on membership numbers in the regional groups. Btw, the fees are 470 NOK for regular, 270 NOK for 30 years and below, and 270 NOK for low income members (honour system).

@Yann04 you could also argue that if the patients are getting better (i.e. less symptoms), then why change the approach? Why not let them continue what they are currently doing and maybe their baseline will increase over time?

Auto-translated from German. I added some line breaks. What makes “Miracle” special "Miracle" looks where others don't look - for example at the so-called neutrophil granulocytes. These essential defense cells of our immune system are the most common immunocompetent cells, but are extremely...

I imagine Landmark, Wyller, etc. believe that they have discovered how something works. Chasing «I know something» is a slippery slope that requires an ironclad integrity to navigate properly. And you need the wits to know when you don’t know something, as well as an extreme openness to the...

I’m amazed at how many studies you find, remember and understand, @forestglip I don’t have the head to search for things now, but I wonder if eg the MS-field has found anything related to EBV if the nervous system can be attacked by prions? I know MS is caused by autoimmunity, but maybe there...

I fully agree. But they don’t know that, or they refuse to acknowledge it. In principle, yes. But the HIV patients had to riot to get anyone to listen. They had plenty of proof. So I’m pessimistic.

I’ve started just calling it Psycho. That being said, I still believe that we shouldn’t discriminate based on the subject, we should discriminate based on the quality of the proposed research project.

Why? They already have effective treatments (in their opinion). Most politicians don’t care about actually making a difference, they care about being perceived as making a difference. We would need someone like the Bernies Sanders of the US to cut through the bullshit.

I don’t think it should be limited to biomed, that would create undue bias. It should, however, be limited to studies of the highest research standards. That would effectively ban 99.9% of current BPS and biomed researchers. I hope virtually unlimited funding would entice some good researchers...

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...