Were historic 'ME' outbreaks really ME?

[Invisible Woman]

My limitations don't vary hour to hour or between days, I'm very severe and never have miracle cures or good days. There are plenty of ME patients who's symptoms don't wax and wane.

I wonder if that's a reflection of severity - that for the more severe end of the scale symptoms are so bad and function is so reduced there isn't a lot of room for fluctuation?

I am classed as severe by a specialist, although it sounds as though I am less severe than you, & I recognize the fluctuations described. They are far less obvious or smaller in range than when I was first ill & categorized as moderate.

I think severity and PEM are two tightly entwined issues. It's very hard to tell where one ends and the other begins. Or is it all PEM?

What percentage of Ramsey's patients were very severe, severe, moderate and so on? I'm not denigrating his work in any way but very severe patients often don't get much by way of treatment & that wasn't much different back then.

Are the very severe under represented not just in terms of the illness burden they experience but in terms of numbers too?

 

[adambeyoncelowe]

I think the point is that there's no single experience of ME, though there are shared patterns, and each person or group of people has unique or distinguishing symptoms which may suggest subgroups.

Take long-haul COVID-19 patients. Some of these patients clearly describe PEM but they also clearly describe symptoms tied to having had a respiratory disease too, which some ME patients will also have but others won't. Someone who got sick after a herpes virus may describe other complications (e.g., shingles) that are unique to their trigger.

But there are still patterns. Rapid muscle fatiguability may or may not be the same as PEM, but the other things (delayed worsening, flu-like symptoms, prolonged recovery) are shared between a good chunk of patients. That pattern of getting a bit better, trying to do stuff, getting worse again is shared by a lot of us.

I think it can both be true that we have different manifestations of the illness and that we have the same illness, at the same time. That's why comprehensive lists of symptoms tend to be so long--because they cover very different presentations.

At its core, though, I think there are some symptoms that are more common (perhaps almost universal) than others. So it can be true that the outbreaks were ME but that they also reflect different subgroups based on their different triggers.

 

[Mithriel]

My limitations don't vary hour to hour or between days, I'm very severe and never have miracle cures or good days. There are plenty of ME patients who's symptoms don't wax and wane.

That's why I said either end of the spectrum can be different. The very severe are so limited they can't change much and the very mild can stay within limits.

Having said that, the variation he meant was not so much in severity, though that comes into it. Quite a few severe people find that they are slightly better or worse at different times of the year or different climates for instance and feeling worse in a bright light or if the bedroom door is left open and noise leaks in is common even among the bedridden.

However the most striking variation in ME which works against it being taken seriously is that the symptoms can change so much. I have had a headache in the morning, been unable to move my legs in the afternoon and unable to see at night. This is often taken as a sign they are all hysterical symptoms but if someone was playing at being an invalid it would be easier to choose one!

My own suspicion is that different parts of the body use up too much ATP at times but who knows.