PEM discussion thread - post-exertional malaise

[Hutan]

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.

 

[Deanne NZ]

I am seeking advice on how to determine if my son is experiencing an extremely long PEM Crash or if his baseline status has now transitioned from being mostly severe to very severe.
There was a very definite and significant crash that occurred in mid April after several weeks of pushing himself a little too much and immediately preceded by a 2 day family trip out of town. He has very typical PEM symptoms including severe headaches, swollen lymph nodes (2-3cm) on one side of his neck (present entire 11 weeks), increased body wide pain, GI issues, weight loss (down by 6kg to 54kg at height of 6 foot 1 inch) and of course he is bedbound & sleeping much of the time. He is getting increasingly weaker.

How long can a PEM crash last when it is at the more severe end of the spectrum?
How do you know when it is no longer a crash but signifies reduced baseline?

 

[Hutan]

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.

 

[SNT Gatchaman]

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/

 

[Deanne NZ]

@Hutan Thank you for your kind words. It is difficult when you cannot make things better nor give your kids certainty about improvement & timeframes.

@SNT Gatchaman I really appreciate your answer. How you explained it makes sense and until there is more understanding of the mechanism I guess we just work with what we do know, which is not much!
Thanks for doing the MUST calculation. Yes his weight is a concern and we have been here before and had an appointment with dietician so I am confident we can prevent further loss & hopefully make gains over a few weeks.

We soldier on, as do others here.

 

[Ravn]

Very sorry your son and you are having such a tough time @Deanne NZ. I have nothing useful to add to what Hutan and SNT Gatchaman have said already. At your son's age it's not overly helpful to be told to just eat, sleep and be patient taking one day at a time for who knows how long (not easy at any age but I suspect it's harder on the young, and probably also on mothers watching their youngsters suffer)

 

[MelbME]

I understand what you're saying and wasn't trying to diminish anyone's experiences. The severity of the patient is very important. What I was trying to convey was that focusing more on the distinctive set of symptoms that we all share in common such as delayed PEM.

I think we'll find that there are different types of ME, like there are with MS, in which there are 4.

The delay in PEM is very likely related to RNA, there are many processes in the body that take 24-48 hours to alter path.

The exacerbation that occurs in response to this new path is of course interesting.. what is biologically happening.

 

[forestglip]

there are many processes in the body that take 24-48 hours to alter path.

From what I hear, delay in PEM changes to nearly immediate when people are very severe. If this is actually the same phenomenon, then a process that only occurs consistently after over 24 hours wouldn't make sense.

 

[MelbME]

From what I hear, delay in PEM changes to nearly immediate when people are very severe. If this is actually the same phenomenon, then a process that only occurs consistently after over 24 hours wouldn't make sense.

That would be interesting to know. The delay differs between people (see DOMS as an example) but I think the fact that people say the delay in PEM becomes immediate when they become severe. That's an interesting piece of knowledge.

Is there a paper on this or is this from your experience in discussion with patients?

 

[Peter T]

From what I hear, delay in PEM changes to nearly immediate when people are very severe. If this is actually the same phenomenon, then a process that only occurs consistently after over 24 hours wouldn't make sense.

I don’t think we can say either way if the delay in PEM changes as people become more severe.

For example with my gluten intolerance there is a twenty four hour delay in the emergence of symptoms, but when I was eating gluten everyday I was neither aware of the gluten issues or the delay. The symptoms were mixed up in the general confusion of my ME. I had previously found that a raw food vegan diet seemed to help my ME symptoms when I was at the trying anything and everything stage, so later trying this again I found when I broke my diet with a sandwich my ME symptoms got worse along with a migraine twenty four hours later. Looking at gluten more systematically I identified my intolerance, but the clear pattern of the delay was only apparent when I was generally gluten free. Similarly if someone is in rolling PEM it is not at all clear if there is or is not a delay in the symptoms being triggered because they are present all the time.

The issue is further confused if one accepts that there is a distinction between PEM and rapid fatiguability. I find when I am more severe in general and/or when I am in PEM that rapid fatiguability becomes more rapid and more marked. So if someone is very severe and in rolling PEM it would be near impossible without some biomarker of PEM to sort out what is ongoing PEM and what is rapid fatiguability.

 

[Andy]

I think it is more likely that the more severe a patient is, the lower the level of over-exertion needed to trigger PEM and, as Peter says, for some it is quite possible that they are in a state of rolling PEM.

 

[Sean]

for some it is quite possible that they are in a state of rolling PEM.

I think this is a serious confounder.

 

[forestglip]

That would be interesting to know. The delay differs between people (see DOMS as an example) but I think the fact that people say the delay in PEM becomes immediate when they become severe. That's an interesting piece of knowledge.

Is there a paper on this or is this from your experience in discussion with patients?

As far as I remember, it's just from what people have said on forums. I'll try to search to find these anecdotes.

The way I understand "rolling PEM" is you're constantly overexerting, so even as the PEM from one activity ends, new PEM is beginning, and you're always in PEM.

Again I'll have to search to confirm I remember right, but I think this is different from if someone could clearly tell PEM was beginning based on an activity that only happened an hour ago.

 

[forestglip]

That would be interesting to know. The delay differs between people (see DOMS as an example) but I think the fact that people say the delay in PEM becomes immediate when they become severe. That's an interesting piece of knowledge.

Is there a paper on this or is this from your experience in discussion with patients?

After some searching and some thought, I think it's very possible that when people say "immediate PEM", they're experiencing rapid fatigability, like @Peter Trewhitt said.

I immediately get very tired after eating, but it only lasts a few hours so I wouldn't consider it PEM. I can see how if this immediate fatigue lasted a day or two and overlapped with "real" PEM starting, it would seem like PEM was immediate.

But just to get a taste of what people say, there are lots of anecdotes if you search online for "immediate PEM" or "immediate PEM severe". Nothing I saw from a quick search was very convincing that it's the same thing.

Wikipedia does say "PEM usually starts 12 to 48 hours after the activity,[34] but can also follow immediately after. PEM can last hours, days, weeks, or months.[10]: 6

This long German PDF is citation 10. Maybe someone who speaks German can figure out what it says about immediate PEM.

 

[forestglip]

There are a few mentions of immediate PEM in research as well, for example:

Post-exertional malaise in daily life and experimental exercise models in patients with myalgic encephalomyelitis/chronic fatigue syndrome, 2023, Vøllestad et al

The US Committee on the Diagnostic Criteria for ME/CFS describes PEM as having an immediate onset or occurring within 30 h, but it is outlined that PEM may also develop hours or days after the trigger has ceased (Locher and IOM, 2015). Moreover, the committee describes an unpredictable duration of PEM as it may last for hours, days, weeks, and even months.

In accord, a survey demonstrated a large variability in reported onset and duration of PEM, and most of the respondents reported that they sometimes experienced an immediate onset and sometimes a delayed onset (Holtzman et al., 2019). The delay ranged from 1 h to a week, and the duration could last from 1 day to several months. Similar results have been reported by others (Chu et al., 2018; Stussman et al., 2020).

What I remember about delay decreasing with increasing severity may have just been based on one or two people, I'm not sure.

 

[MelbME]

After some searching and some thought, I think it's very possible that when people say "immediate PEM", they're experiencing rapid fatigability, like @Peter Trewhitt said.

I immediately get very tired after eating, but it only lasts a few hours so I wouldn't consider it PEM. I can see how if this immediate fatigue lasted a day or two and overlapped with "real" PEM starting, it would seem like PEM was immediate.

But just to get a taste of what people say, there are lots of anecdotes if you search online for "immediate PEM" or "immediate PEM severe". Nothing I saw from a quick search was very convincing that it's the same thing.

Wikipedia does say "PEM usually starts 12 to 48 hours after the activity,[34] but can also follow immediately after. PEM can last hours, days, weeks, or months.[10]: 6

This long German PDF is citation 10. Maybe someone who speaks German can figure out what it says about immediate PEM.

I have heard from patients that experience immediate PEM such that they describe this red flush that starts in the face and spreads.

I am particularly interested in the concept that a mild patient may experience a delay but if they were to become more severe with time they notice their PEM has less delay. I'd be keen to know of PEM delay inversely correlated to severity.

That is something I haven't heard but would be a worthwhile area to investigate if that was happening.

 

[forestglip]

I am particularly interested in the concept that a mild patient may experience a delay but if they were to become more severe with time they notice their PEM has less delay. I'd be keen to know of PEM delay inversely correlated to severity.

My mind could have been playing tricks with remembering hearing that delay decreased as people got more severe. I'll keep an eye out, but maybe some of the severe members here can confirm or deny it happening to them.

 

[horton6]

but maybe some of the severe members here can confirm or deny it happening to them.

I'm very severe, and I still experience my PEM on a delay of about 24 hours, with the peak in symptoms at roughly 48 hours.

There are some symptoms that I experience an uptick in immediately after an activity (e.g. muscles in my scalp fasciculate if I raise my head a little bit off the pillow) but that usually feels like I'm already in a state of aggravating my condition (perhaps this is "rolling PEM", but it's not the flu-like feeling of entering a sickness state, or the headache and fatigue I mostly associate with PEM).

 

[MelbME]

Interesting discussion on PEM.

What is the range of time before PEM do you recognise its coming?

 

[Kitty]

What is the range of time before PEM do you recognise its coming?

For me (moderately ill) I often wake up with it the day after exertion.

There appears to be some kind of relationship with sleep, but I don't know how common it is or whether it means anything. For instance, overactivity can cause so much overstimulation that I can't sleep at all. On Wednesday evening I went to a new session at a pub 35 minutes' drive away, I played for longer than I'm used to, and felt a bit nervy due to not knowing most of the people. After that I was awake for 28 hours (so I felt okay on Thursday), and the PEM has only kicked in this morning, Friday. Ugh.