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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.

Some results from the EMEA European survey One of the results was that age of onset <20 years is associated strongly with having severe and very severe ME. Infection trigger about half of cases. The recovered patients group had a different triggering event profile than those who...

Detailed criticism has been published elsewhere already but it still be useful to write an overview of this complex topic situation from our perspective. The main points are I think: White repeatedly claims the treatment is beneficial but this claim is not supported by reliable evidence. If...

Is anyone taking up the task of pointing out the problems with White's ideas? Could David Tuller write an article in their newsletter? I'm really tired of the constant dishonest spin by PACE authors.

The technical term for a situation where a person has two mitochondrial genomes, one normal and the other with a disease causing mutation, is heteroplasmy. Heteroplasmy can vary between tissues. For this reason I suspect that mitochondrial disorders are underdiagnosed.

Really, can we see the evidence for this causal relationship?

It might be a coincidence but there was a recent study which found a possible association between ME/CFS and the TPPP gene. If one looks at the results of genome wide association studies for this gene, glomerular filtration rate comes up repeatedly. https://www.ebi.ac.uk/gwas/genes/TPPP The...

Has medical science developed tests of stamina? By stamina I mean the ability to keep doing an activity for longer periods of time with limited decline in performance or discomfort.

Regarding sustained metabolism. I've been doing walks with other people and one clearly observable difference is that I don't have the same stamina as others, even people who are 30+ years olders and have their own health problems. In comparison to people who are significantly older than me, my...