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I have not read this because it's in Norwegian but still have opinions on questionnaires. Where all questionnaires fail is 1) they appear to be designed for disability that is independent of activity levels, like no longer having legs. 2) they consider each activity in isolation, while in...

Reading up on the things microtubules / tubulin is involved in, is interesting. It's involved in the regulation of cellular energy metabolism and mast cell degranulation and probably many other functions. The link to energy metabolism is the role it plays in the cytoskeleton. It appears that...

There probably exist patients who like being told that there is nothing wrong and that their illness is a figment of their imagination and that they need psychotherapy to stop believing they're ill and/or feel better. But I suspect they like it only because of a combination of specific factors...

A name isn't meant to be a complete description and cannot be one. "syndrome" means "a group of symptoms which consistently occur together". A reader familiar with the meaning of syndrome therefore knows that in PEMS there are other symptoms that typically occur with postexertional malaise.

Lukewarm reception overall, and maybe this: "SEID is killing ME" https://www.meadvocacy.org/seid_is_killing_me Maybe with the next IOM report?

It's obviously PEMS.

I'm sorry, this is my idea :D

How about calling this illness "postexertional malaise syndrome"? It seems such an obviously good name.

I never understood what triggered my illness. I remember that it was initially episodic and very confusing because I often felt well enough to go back to school but then after a few days started struggling again. And there were longer periods of feeling okay and longer periods of feeling worse...

A useful description is having to put in more effort than normally into ordinary movement and activities, and by that I mean at every step, when taking a glass of water, when cutting vegetables and using the stairs and all these ordinary things. It all takes so much effort and is draining.

Systemic exertion intolerance disease wasn't so bad a name.

Perhaps the resistance to using the term fatigue has a lot do with aspects of English language and culture, as well as the history of ME (the reduction of the illness to fatigue). In France the ME patients decided they would try to destigmatize fatigue instead of distancing the illness from it...

@Snow Leopard do you have any idea what could make me so hungry after exertion? This occurs immediately or shortly afterwards. Increased hunger can also occur on the next day after significant exertion. Eating tends to improve fatigue somewhat.

Thanks, I'll read this carefully now.

I don't have anything particularly insightful to contribute. Having done whole exome sequencing, whole genome sequencing would be a possible next step for me but it seems hard to justify when there are so many unknowns and I have little income. In the literature, "diagnostic yield" seems to be...

That sounds interesting. Can you share a link? This seems to fit with what I've observed in other people who are on the milder end of illness: they get used to feeling that way, build a life that is compatible with their limitations and then begin thinking that they're "almost normal", or at...

Mild PEM for me is just feeling somewhat worse on that day, and in particular feeling like I didn't sleep well, needing more rest. There is some reduction in ability to function as activities become more exhausting to carry out. If PEM is defined strictly as marked reduction in function and...

Saugstad said two severely ill patients recovered in his new clinic (it's unclear if recovered meant no longer having illness). The treatment was CoQ10, B-12, and something that I understood was rehydration fluids. I have a slightly bad feeling about this.

This pattern was generally also seen in other countries but I forgot to take a screenshot.

They were just shared in the webinar.