Could you elaborate on this please, what have they changed the meaning of PEM from and to?
Firstly, I don't want to derail the thread about who has what and what is ME, what some might consider a comorbidity, or just other diagnoses that pwME might have. There are other threads with those conversations.
So. PEM - my own personal opinion. Many of us a few years into the illness finally started to realize that there can be quite a long delay between activity and payback. There was no description for it other than worsening after exertion, which hardly pins it down or does it justice.
In recent years we've started to call it PEM, though some refer to PENE (Post Exertion Neuroimmune Exhaustion), and there have been efforts to describe and refine it. Also to understand if it is unique to ME. We know that patients with other conditions suffer Post Exertion Fatigue - but PEM is much more than fatigue.
Lenny Jason among others has done some work trying to discover what it is & how to define it. I think it's still a work in progress.
So, I'm not sure we have entirely captured PEM by definition yet. Do certain subgroups experience PEM differently? Does PEM change as the duration of the condition change? Does an individual always experience the same symptoms of PEM? If not, can they predict depending on activity, what the symptoms of payback are likely to be?
So it's not so much a redefinition of PEM as exploring the outer limits of what we understand PEM to be.
I'm not slinging mud at anyone in particular here - when we start lumping conditions, which may or may not be connected, groups will start to use common language. Even though they are not necessarily describing the same thing. So the concept and definition of PEM becomes muddied and it's value as a diagnostic & management tool potentially undermined.
I'll use a silly example. I have ME. i often suffer anaemia. There may be a slight link in my case, but it's also quite possible they have nothing to do with each other. One complex mechanism having two independent faults isn't impossible and the human body is very complex.
People with anaemia, but without ME, will feel horrible after they exert themselves. They may experience - light headedness, nausea, palpitations, weakness, feeling faint, headaches etc. As anaemia takes a while to resolve those symptoms can be ongoing. At first glance a description might be similar to PEM as an ME patient experiences it. As someone who has experienced both, they are different things.
However, if I start to group anaemia sufferers and ME sufferers together, both groups will start to use common language. Some of those with anaemia alone will start to describe what they experience as PEM.
So, the useful and potentially unique term to describe one of the fundamental issues of life with ME becomes muddied and overused.
This is extremely detrimental as PEM is not a trivial thing and the definition and acknowledgment of PEM would be a key part of establishing harm when encouraging ME patients to do more than is appropriate to them.
Apologies for the length of the reply. Hard to be brief and/or clear.
