PEM discussion thread

Welcome to the forum @TinyBird10. I'm sorry that you are experiencing that; it sounds very frustrating.

Most of us are not doctors and none of us can offer you an informed diagnosis - we have a rule that doesn't allow us to provide medical advice, recognising the dangers of us trying to diagnose people from posts. It sounds as though things have become worse for you lately, so it's probably a good idea to get checked out by a doctor again.

We have quite a lot of discussion about post-exertional malaise in this sub-forum, as well as some resources. Hopefully that will give you a better idea about members' experiences of post-exertional malaise. It could be worth checking out your national or state-level ME/CFS patient organisation as they may have resources relevant to where you are. We have some of those organisations listed here. Some have advice-lines staffed by nurses as well as online and face-to-face support groups.

 

Oh Deanne, that sounds incredibly difficult. Hugs.
My son was very ill, essentially bed bound for several months, sleeping much of the time as your son is, before slowly regaining a lot of function. The number of hours of sleep (decreasing) seemed to be a good indication of recovery.

I'd taken on so much of the attitude that our illness was not particularly serious, even though I was struggling with it myself, that I didn't think to get a doctor to come when my son was like that. Well, maybe I thought it, it's all a haze now, but I didn't do it. We'd been to see doctors when my son was able to get to the doctor and they weren't interested.

It is serious and there should be medical help in managing things, especially the nutrition issues. I think the doctors actually need to see these young people. It's so hard, you have to be there to help as soon as they are awake, whenever that is, but there is a lot of waiting, and worrying.

 

I'm very sorry to read this Deanne. It's difficult to judge and I think the question has been asked whether baseline reductions, especially at the severe to very severe end, represent a rapidly cycling PEM that is essentially static ("rolling PEM"). So until we know more on mechanisms it may not be as important to discriminate. I don't think we can guess how long a baseline reduction might last - potentially it's relatively short in terms of months rather than years. 11 weeks of significantly worse symptoms and weight loss to 54kg (in a 6' 1"" male) are very worrying.

Here's the MUST calculation using data in your post above. https://www.bapen.org.uk/must-and-self-screening/must-calculator/

 

I have been thinking about why it's very important that PEM is defined specifically as the usually delayed, and usually lasting more than a day, significant worsening of a person's MECFS that is triggered by exertion.

I think it's vital it doesn't get conflated with all other worsening of symptoms that happens during and immediately after every exertion that can be relatively minor and short lived if we are able to rest enough. I say relatively, because the point is that PEM by definition is being much more ill than our usual.

If we muddle together all symptoms after exertion and call it all PEM, how can we explain to carers, family, and clinicians that something I did today has any relation to how I feel tomorrow?

They see us apparently coping with an outing, and don't see the consequences for us that confine us to bed for the next week. They don't understand the need to stop doing something we're apparently coping well with, or understand the cumulative effect of having a shower on the same day we have a visitor, when we might usually manage one but not both without horrible consequences. They don't understand that someone with very severe ME can be made even worse for weeks or longer by apparently trivial actions that barely register to others as exertion.

When we were new to ME/CFS, it surely helped us when we learned to recognise the triggers that were likely to lead to waking up a day or two later badly crashed. It gives us at least a fighting chance of some level of control. I can't remember whether the term PEM existed when I was diagnosed with ME in 1990, but I soon figured out for myself that if I did a bit more than usual, and pushed through the usual worsening pain, nausea, weakness etc, and kept going with activity for too long, I'd end up having to take sick leave for a week or two.

And how would researchers learn whether there are different things going on with our biochemistry if they don't test before and for some days after an exercise challenge?

I was trying to think of parallels with other conditions, where fluctuations in symptoms are related to identifiable factors.

I remember back to my teens and early adult life having what seemed like random mood swings, with every now and then sinking into a black cloud of weepy depression for a few days. I somehow didn't make the association with my menstrual cycle. Once I found out about premenstrual syndrome, it all suddenly made sense. It wasn't me being pathetic and psychologically inadequate, it was caused by my hormones. Once you know the trigger, it makes management possible.

Similarly with migraines. I have gradually recognised triggers, so have more chance of avoiding them.

 

I agree we shouldn't generalise from our own experience. I just gave one particular person's experience as an example.

What I was trying and clearly not succeeding in saying was that PEM is a term created by clinicians listening to patients and discussing with other clinicians, and giving a name to a pattern of worsening way out of proportion to exertion their patients described. That pattern including a delay between the patient doing a bit more activity than usual, and getting much sicker a day or two later, and in many cases that lasted for days or weeks, and the amount of worsening would be way out of proportion to the exertion, which would have not caused any symptoms before the illness.

It is this observed pattern those doctors named PEM. And this pattern that more clinicians writing guidelines and definitions named PEM.

It's been interesting observing people with long covid and their doctors some of whom knew nothing about ME/CFS rediscovering the same phenomenon.

My point is it is this pattern, or phenomenon that is named PEM by clinicians and it's based on observation by many clinicians, and of many patients. It makes no claims about whether it is biologically the same as or different from the everyday more minor worsening with every exertion that pwME experience.

Even Paul Garner, in the days before he adopted loopy ideas, described well his experience of trying to do a bit more in the early days of his long covid, and being confined to bed for days feeling dreadful, if I recall correctly.

@Jonathan Edwards, why shouldn't that phenomenon have a name?

 

Coming back to this, I find I want to question some assumptions and add some points:

My point, and this is emphatically not based only on my own experience, is that the 'usual' increases in symptoms with any activity for pwME is at a certain level, and the 'unusual' increase in symptoms in PEM is disproportionately much greater, given the small increase in activity.

So of course the type and severity of symptoms when ME/CFS is at its current non PEM level for a pwME is abnormal for a healthy person, and needs to be researched, and the pwME needs to adjust their lifestyle, sometimes drastically, to cope with it.

But the sudden step change from the pwME's current usual symptom severity to a much greater symptom severity and debility is way out of proportion to the slight change in their activity in the preceding days.

That needs to be named, described, investigated and coped with by pwME in a different way to coping with their usual symptoms and capacity.

We need to recogise PEM/crashes as something different from the rest of ME/CFS:

Say someone with ME/CFS does Z amount of exertion one day, and gets their usual symptoms at level Y during and immediately afterwards, and this their usual uncrashed state. If they can do about the same level of activity Z, with the same symptom level Y on subsequent days, then we say they are not crashed, or not in PEM, and their current exertion capacity is greater than or equal to Z.

Say one day they do Z+0.1Z amount of exertion one day, they may experience a proportionate Y+0.1Y level of symptoms that day.
Say they wake up the next morning and for the following several days they suddenly increase to 10Y level of severity with their usual symptoms plus 10y level of new symptoms and have 0 activity capacity to do any of their usual activities. Then they are experiencing PEM.

It's not only about delay, it's about a disproportionate response to a small increase in usual activity.

We can only go on what recent and current clinicians have gleaned from their patients, and follow their current definitions of PEM. Of course there are variations between patients. If I dare to mention my own case again, my experience of ME/CFS is different from my daughters, just as our experiences of migraines are different from each others. And expanding to all the thousands of others' descriptions I have read here and elsewhere and the consclusions drawn from the many thousands collated into current PEM definitions. They are all about observation and patients experiences, not making any claims to cause or biology.

So no, I don't agree with this:

 

Apologies if my recent posts on this thread are a bit incoherent. I'm a bit befuddled by trying to do too much thinking at the moment.