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

Utsikt said:
But if ME/CFS is strictly defined as a set of criteria and a certain level of impairment, on paper they did not have ME/CFS during the good patches. But they very well might have had whatever causes ME/CFS all along.
Click to expand...

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.
 
Jonathan Edwards said:
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.
Click to expand...
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.
 
hotblack said:
Does someone who is mild have ME/CFS if they’re having a good day and functioning near normal?
Click to expand...

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.
 
You must log in or register to reply here.
Back
Top Bottom