Review Advocating the role of trained immunity in the pathogenesis of ME/CFS; a mini review, 2025, Humer et al

I am not so sure. Do the criteria require symptoms every day - or definitely in the last 27 days or whatever? It takes 3-6 months to qualify for diagnosis. Maybe you can have a week off now and again? And if PEM is the cardinal feature and that is worsening presumably there are terms less worse when you might not get over the bar for 'significantly impaired' or whatever.

 

I thought some criteria required you to have at least 50 % reduced functional capacity compared to before you got sick. But that might just be a Norwegian thing.

Regardless of where we draw the line, the line is kind of arbitrary, at least as long as you experience PEM for longer than 3-6 months after onset.

I don’t know how to deal with the issue of on and off PEM like you describe.

 

I seem to have accidentally triggered a philosophical discussion! @EndME put it well though I think and overall I support their view.

Does someone who is mild have ME/CFS if they’re having a good day and functioning near normal? Do people in a sort of remission, even if temporary have ME/CFS? Do those people who get better have, or did they have ME/CFS? Where a line is drawn in timescale for recovery is interesting and probably fuzzy but I think we have to say yes, they have or had ME/CFS. And I think that gives me hope that this isn’t permanent or degenerative in the way some other things are.

It’s also in a way only known after the fact because as others have said we do judge the concept of ME/CFS on what people experience rather than having an underlying understanding or measure of what is going on. For now.

 

I guess one of the ways to solve that is to ask if they're still liable to PEM?

I had nearly nine years (split between two periods) of what looked like recovery at the time. I'd only vaguely heard of ME and didn't know the symptoms, so I'd no idea I might have it.

But staying feeling recovered required pacing. Not as I know it now, of course, it was things like making sure I didn't arrange go out more than one evening a week (two at the most). If I had gone out twice I needed most of the weekend clear, and every third weekend got blocked out regardless. I kept one of those month-to-view wall calendars so it was easily to see how many scribbles there were.

It sounds strange now, but at the time I was only vaguely conscious I was doing it. It explained it to myself as planning, and everybody does planning, right? Yet it was conscious enough that I remember doing it.

 

I wouldn't describe myself as mild because I'm housebound and even small activities can trigger PEM, but every day is a good day in terms of not having symptoms when I'm not in PEM.

 

I would consider myself pretty mild over the last few years. Was able to work or attend school part time with remote accommodations for ~4 hours a day (thanks to being able to tolerate a stimulant well). I was able to get out of the house at least once a day, though I’d pay for it with PEM if I stayed out for more than ~2-3 hours.

I remember describing my limitations at that moment to my boss and she responded “oh wow it must be so frustrating that your condition is so severe and impacts you that much.” She certainly looked shocked when I told her that was the best I’ve felt in 6+ years and I would be considered mild compared to other pwME.

maybe the important question is: “is your milder condition dependent on a fine-tuned dance of pacing, symptom management, and getting lucky with off-label treatments/supplements, or is your body actually able to do whatever is asked of it without issue (within reason compared to the general population)?”

I suspect that many “remission” cases are closer to the former than the latter.

added: even now, I’m not sure how I’d classify myself since taking malic acid + some other supplements has completely eliminated PEM for me. It’s the closest to remission I’ve ever gotten, but I’d be right back to where I was if I didn’t have a handful of supplements to take every 6 hours or so. Should it be a requirement of ‘remission’ that you don’t need continuous medication or very careful logistical management to maintain it? Seems like different diseases have different answers to that. I don’t know the answer to that, happy to hear what others think.