Poll on post-exertion malaise

[MeSci]

I was curious as to how many people who have (other) typical ME symptoms have, or have always had, post-exertional malaise.

The poll should not be completed by people who are not yet reasonably certain that they have ME/SEID, ideally by the CCC criteria, which are summarised in this thread.

If people don't always get PEM following exertion (physical or mental), they should respond as people who do, unless they get PEM-free periods longer than about 2 weeks.

I'm not distinguishing in this poll between spontaneous improvements and those brought about by treatment.

If you're not sure whether or not you had PEM at the start, but you do now, please select 'Since getting ME/SEID as far as you recall?'

This is more complicated than I envisaged at first!

You can select more than one response, and you can change your choice(s).

I apologise in advance if no options apply to you. I may be able to add options if they don't seem too rare or complicated!

EDIT - I'm not expecting to get any meaningful stats from this - just a general picture of the variations.

 

[Mary]

FWIW, I don't have pain with this illness and never have. But I qualify otherwise.

 

[Sushi]

A complication for me, in responding to this poll, is when did I "get" ME/CFS? I really don't know except that it was a long, long time ago.

Sushi

 

[*GG*]

I'm not really seeing a difference between these 2 questions for me:

1. When you first became ill with ME/SEID?
2. Ever since getting ME/SEID?

I have also improved since becoming ill.

GG

@MeSci

 

[maddietod]

This was interesting to think about. I noticed something was wrong because I got tired doing what I had always done. I've decided to call that PEM. You might have been thinking of specific exertion, like exercise or noisy socializing, but I'm thinking that maybe our fatigue is pervasive PEM.

It wasn't that I suddenly couldn't go running any more (I've never been a runner); I suddenly couldn't handle taking 2 kids to a museum.

 

[Ember]

The poll should not be completed by people who are not yet reasonably certain that they have ME/SEID, ideally by the CCC criteria, which are summarised in this thread.

The CCC doesn't define ME/SEID. Nothing does.

 

[alex3619]

When my illness was mild I never noticed PEM. As it got a bit worse I knew I had issues, but couldn't be sure. My illness started mild and progressed in stages ... major infections led to even worse illness, one by one. At some point PEM became obvious, probably in the mid to late 90s.

I am guessing severity of PEM may be related to both severity of illness and degree of management. Well managed mild patients might not experience PEM. However, and I have said this before, I think a 2 day CPET would still pick up the energy crash.

 

[PNR2008]

I had PEM almost immediately, my illness started like a boom from breaking the sound barrier. For the first year before getting a diagnosis I tried very hard to pass for healthy. I'd put everything into work then crash when the work day was finished, I would crawl into bed too tired to eat then wake up later with a little energy to make something before sleeping for the night.

I even would go home to eat lunch and fall asleep until 3pm, whoops. Almost immediately my social life ended and I slept the week-end away sometimes waking up in a stupor. I lost weight even though I was thin and my face looked drained. The infection was worst then because the fever, night sweats, aches and pains, started in full force. It was the most terrifying time of my life.

 

[MeSci]

FWIW, I don't have pain with this illness and never have. But I qualify otherwise.

I don't get much pain either, other than muscle aches, which are largely easy to ignore. The CCC say that people with infectious-type onset can be considered to have ME/CFS. I don't recall any infectious-type onset, but I seem quite typical otherwise, so I reckon I am as definite an ME-er as I can be!

 

[MeSci]

I'm not really seeing a difference between these 2 questions for me:

1. When you first became ill with ME/SEID?
2. Ever since getting ME/SEID?

I have also improved since becoming ill.

GG

@MeSci

The first one can be selected if you had PEM at the start but not later, but also if you had it later/throughout. I'm not looking for stats, but to see what different variations there are. I'm particularly interested to see if a significant number of people have not had PEM throughout. I'm thinking of how essential PEM should be for diagnosis, and whether perhaps wording of diagnostic criteria needs to be tweaked to allow for people whose PEM has not been constant throughout, but other symptoms, and the sometime presence of PEM, make it clear that they do have ME/SEID. Early diagnosis could be a particular problem if people don't have PEM at the start.

Maybe we need a different way of assessing whether there is a tendency to, or risk of, PEM, even when it isn't manifesting itself.

 

[Mij]

Even though we pace and manage our energy to prevent PEM, it does not mean we don't get PEM. The pathology or whatever we want to call it is always there.

It is the hallmark of this illness.

 

[MeSci]

A complication for me, in responding to this poll, is when did I "get" ME/CFS? I really don't know except that it was a long, long time ago.

Sushi

I know it can be difficult to pinpoint. I just have to leave it to people to decide whether they have a clear enough picture to be able to select various answers - or any. I had a few 'hints' of ME during my life, and it seems to have eventually developed quite gradually over a year or so. I date my ME as starting when I started to find that I could sometimes not walk up a slight incline without difficulty, because my legs were so weak. Other symptoms occurred a bit earlier, but there is a significant blurring between IBS and ME for me, and IBS can have a lot of similar symptoms to ME. IBS (which had also previously been intermittent) seemed to gradually transform into ME.

 

[MeSci]

This was interesting to think about. I noticed something was wrong because I got tired doing what I had always done. I've decided to call that PEM. You might have been thinking of specific exertion, like exercise or noisy socializing, but I'm thinking that maybe our fatigue is pervasive PEM.

It wasn't that I suddenly couldn't go running any more (I've never been a runner); I suddenly couldn't handle taking 2 kids to a museum.

I mean any kind of exertion that was previously tolerated without adverse effects, and by PEM I mean the general exacerbation of symptoms that occurs after exertion, usually following a delay.

 

[MeSci]

I don't get much pain either, other than muscle aches, which are largely easy to ignore. The CCC say that people with infectious-type onset can be considered to have ME/CFS. I don't recall any infectious-type onset, but I seem quite typical otherwise, so I reckon I am as definite an ME-er as I can be!

Just realised I didn't complete this - was in a rush to get through posts! I meant "The CCC say that people with infectious-type onset can be considered to have ME/CFS even if they don't have pain."

 

[soxfan]

I only get PEM from too much mental exertion....never with physical exertion. I can walk miles and miles everyday but if I go shopping I am wrecked!

 

[JaimeS]

I'm beginning to suspect I was slightly ill, or had potential-ME hovering around for years before I really began to think of it as a pathological problem. It used to be that I'd exercise at the gym, and 24 to 48 hours later, it would hit me and I'd be tired, my muscles would hurt. No one I knew understood this. I'd be all, "you know, because I exercised two days ago" and people would stare and me like I was nuts. I usually had awesome energy levels the day I'd exercised.

My PEM now has no delay. It's acute and immediate and lasts 24-48 hours. Usually almost exactly a day and a half, though.

-J