PEM discussion thread

I’m actually quite/more worried about how they saw delayed PEM and then explained it away assuming it must be an external factor without even checking it (which could have been done by interview) ‘because it didn’t fit’

I’m assuming and haven’t yet looked up the details on their sample and who it included

 

And if it is subjective measures there is the issue of the wired thing vs people answering literally on how they feel (eg we know we feel hyper because we are overtired but..)

 

I thought that earlier on something. Basically it isn’t just the journey but if I had to set an alarm (as well as all the packing etc) just that impact on my sleep which really needs to do what it wants vs my daily heakth exertion aches and pains (I can’t ever control them enough the only way I get sleep is by not trying to control it and leering it come when it comes - so alarms are a nightmare because I can sleep through one easily if I’m in a deep sleep)

- basically I would not sleep at all probably the whole night before. Certainly until the days when I knew I had someone else coming in to manually wake me well ahead of time to get liquid then get ready . And even then it would be likely distracted sleep or less than normal unless I lucked out with what timing my sleep was at (i get PEM so often then it cycles back round) vs the timing I had to be somewhere ‘working for me’

 

We appreciate you Trish. Thanks for all your efforts with this.

 

That’s interesting because that’s the part I tend to call ‘cognitive fatigue’ - noting the pain part is obviously an exception in not fitting under that but me holding eg arms unsupported or neck not comfy means a growing ache I then have to be straight to quiet bed lying time for.

the part I definitely call PEM (the bigger the example the easier for me as there is lot of grey) is when I go to an appointment. I’ll obviously have to be in bed straight after from exhaustion of both kinds. But 36hrs later hits what I call PEM - which if it has involved my feet down for a long time these days has a really distinctive ‘revving’ pain through the bottom half of my legs specifically and I spent the night needing the loo then water and salt. After this bit (pain and needing wee, whilst exhausted) ends then I’m pass out exhausted re lifting head or arms and needing head support / burying it into pillows like it’s heavy. But I’ve also always had these hot aches particularly in wrists and ankles where I need to chase cold sheet for them - through both stages but it eases off eventually as I get enough rest.

Before I started getting the bottom of leg thing I’d always had these hot wrists and ankles ‘pitching/peaking’ which felt very rheumatic and was delayed so I’ve sirt of focused on those signals kicking in for timing I guess

you’ll note I have other symptoms during this but the bit I’ve picked out as distinctive is more what I relate to being physical exertion triggered

you’ve reminded me that even years ago I realised that just cognitive fatigue ‘happened at the time’ where physical stuff caused both physical and cognitive but was delayed - but that there is this ‘cebtral’ element to both (relates to needing to support head snd I guess consciousness as I’d deffo say the passed out level of sleep but also the can’t sleep despite needing it so much I’d be in pain )

 

I think if we focus on the features that are not just exaggerated normal fatigue, but acknowledge variation between individuals we will have something useful.

As long as we distinguish rapid fatiguability and hypersensitivities that resolve fairly rapidly from PEM which has the unusual patterns that may but not necessary include some or all of the following- that’s is the weird and wonderful array of properties we know and love.

 

Yeah, I thought that was a bit odd too. But this is a group of (mostly) exercise scientists looking at their data and only seeing delayed onset "occasionally", so I can see where they're coming from. Subjects also provided "free-text input"/"narratives" as in other CPET studies. The authors went to great lengths to check recovery times between the scores and the narratives:

 

Just want to echo @AliceLily - so grateful for all the work you're putting into this.

My views are evolving too. These discussions are so worthwhile.

 

My repertoire includes cognitive crashes, pain flares and the whole shebang, but I see all of them as coming under the umbrella of PEM, because they're all post-exertional, they're all prolonged and they're all disproportionate. They're not really as discrete from each other as the separate labels suggest. What I have now is the whole shebang.

 

It’s good to see these limitations/issues/complexities not just being talked about, but the detail of what state people were in and why annotated for a study - a notm I’d like to see develop in some way

 

My PEM already starts during exertion. Every week I do my grocery shopping 2 x 800 meters on my electric bike. Muscle aches already present while cycling. I only had
one and a half minute of aerobic energy during CPET. When blood volume could be low: not enough oxygen could halt the Krebs cycle and anaerobic energy produces more lactate?.
When I can finally sit down, I drink about one liter. At one point I have to get up from my armchair and the first steps are always excruciatingly painful, as if my muscles are torn apart. Muscle damage, highly probable.

My heart rate is 100+, higher than normal and stays high even in bed hours later. I'm tired but wired. Sleep is always a problem, after shopping even worse.
The next day I'm way slower than normal, my brain is at half capacity, muscles aching.
When I take my bike chart it's worse because I buy more heavy stuff, about 50 kg. All of the above is worse and lasts longer.

And I'm one of the lucky ones, I don't have the flu-like symptoms.

 

I think back to when I was younger and when I wasn’t in PEM outsiders might have thought my function in the sense of going on a night out or something was ‘normal’. I’m not sure that the ‘after’ of that however was much less extreme in debilitation than when I’m in PEM now (of course I can’t do anywhere near that these days to cause it however) but I couldn’t move or wake. But had been dancing in loud music (yes probably pushing thru with adrenaline not realising) having saved up rest before etc. there were nights I’d have to come home having had a funny turn or felt unwell, hence I underline the ‘when I’d made sure I was well rested’.

I was definitely extremely PEM-y because when I was in situations like uni (days where lecture attendance wasn’t monitored) outside of exam type periods. On the other hand I couldn’t function day to day anywhere near the level of my peers and having been an athlete as well as quite academic/lots of that at school it’s a fair comparison - I simply couldn’t have reliably got to five days a week of lectures and sit in the library or get what I needed from it after as I’d want to get home to lie down. I’d also drive because I knew I couldn’t bus or walk in (I think I knew then but didn’t have the words for oI but knew the walking drained me). But back then it wasn't really acknowedlged as that

however when I wasn’t in a point in time where I could follow my body’s lead I wasn’t going out but just that trying to eg do work day after day would lead to days I’d not wake up and even after goodness knows how much caffeine had no chance of brain working and that going on for days whilst I crossed my fingers I’d have enough before my deadline when it switched back on I had any chance of getting something in. That cumulative of any form of 'normal' was actually far worse on my health than doing an individual thing within a situation where I could then rest that off. It was the forcing the body continually when already done-in that bit from day before that was most long-term punishing and harmful.

I think if we - who have a fighting chance from our experiences of splitting things out and getting better terms for it - can actually manage to describe these different parts that ALL contribute to a horrific debilitation, limitations and what is poorly currently just hand-waived as ‘fluctuating’ then it actually could be the most important thing to help newer people understand they have the illness, what might be their limits vs different reactions showing you that.

most importantly when someone mentioned fatigue clinic advice - it is so poor, if well-intentioned (but either based on lazy listening or asking people in a situation they are too tired and to inexperienced to know) that it excludes people like I was. And in fact/reality harms and gaslights and does incredible life-long damage by that (what name do we call what they are choosing to do?). And I think I’ve had the most typical type given the sleep reversal PEm extremity and other stuff - yet spent years thinking that as I could theoretically walk as fast snd well as others on x day I didn’t have this fatigue thing branded as having to break things up. And of course I didn’t think I couldn’t walk on those x days I had PEM because I just thought I was pathetic being unable to wake up.

This, which I think is me/cfs, is the area that hasn't just been neglected but treated as the collateral damage within its own diagnosis (treat it as if it isn't that, and rescue those with something different by fishing them out and using being able to do these things continually as it is just fatigue as a filter and then not just abandon but often worse to those who have the actual thing - it used to be because people sided with certain names we don't mention that 'the illness doesn't exist' and now it is because people are conned and lied to that there is nothign they can do - once they have been part of a system that damaged us to that extent).

I think we have to not keep doing over having information for me/cfs just because we are overly concerned about the just in case, I have ended up finding if I call it fatigue people get it, they beleive the bits that go tired in front of them, it all explains they hell they put me through, it isn't OK. I'm not saying exclude people, but I do think we need to make sure we aren't side-tracked from getting the description of me/cfs right first before thinking of the other ifs and maybes. It is an idiosyncratic illness so it is hard enough trying to get those specifics right without turning it into catch-alls on each point (and not being careful about the wording).

so these things are important to not get lowest common denominatored because I think then they end up useless. Fir this. Certainly fatigue clinics stuff is hugely harmful to me due to this. I think we can manage to ask and understand hopefully being asked the tough questions and realise they aren’t to offend or exclude but perhaps to be a bit more accurate in peeling the onion on the components/ phenomena

I know and say experience because I had years eg stuck in various hells of either work or others enforcing things like sleep hygiene that just harmed me and made my illness worse very fast and made me feel like I was going mad and in a dystopia. But also even when just trying to hold onto a job with adjustments and leeway the build-up of waiting for that big rest every six weeks because the evenings and weekends didn’t cut enough catch up (and PEM would happen too on working days I’d sleep thru alarm etc) I think many of us are most of the time in situations where these things ‘layer’ on top of each other because we never get to fully rest off that pem, or don’t rest of the exhaustion so it adds to the cumulation which I think hits as PEM - but that’s so hard to tease apart without being able to think thru which ‘pattern’ might be separate to another.

but yes anyone saying this is really hard I 100% agree with!

 

Yeah I’m more remarking on my lack of good name for it - I think I started using that because of the need to explain ‘and now this ends’ and because of the looks on the face of the other person as my speech changed significantly

ie I got into the habit of explaining myself (and wanted to focus on it being ‘I’m exhausted it affects my speech’ rather than if leaving that type of person to it them horribly suggesting some grim term alluding to going mad or ‘trauma’ or other nonsense people invent)

it’s exhaustion from a fstiguability fir me I guess in the sense I know I can’t really sit for twenty minutes and chat without it induces growing aches/pains through arms and feet and slowly curling body whilst my brain runs out and the sensory makes it painful to use my eyes and hurts my brain etc

but I don’t know why I separate cognitive from physical other than that the physical for me adds in a very specific pattern I’ve noticed. But the sensory and cognitive can be just as devastating (and cause the not being able to wake brain or body for days)

 

Yep, I understand that. The reason I keep poking at it (and I apologise, I know I'm not really getting us anywhere!) is that combining all overexertion symptoms into one phenomenon potentially makes it harder for newly diagnosed people, and their GPs, to describe and discuss them in a precise way. Aspects of it can feel really quite different, and that knowledge might be all a new patient has.

Maybe I'm imagining it and it doesn't really make it harder at all. It's difficult for us to cast off our own experience and put ourselves in the shoes of a struggling young person, a worried parent, or a doctor with more patients than they have time to see them.

 

I've only been able to randomly read one or two posts per page, to get a general flavour of the discussion. My main impression is that people are trying to make the term PEM do two different things. One is to describe all types of post-exertional symptom exacerbation. The other is to zoom in to what's distinctive about ME post-exertional symptom exacerbation

In a way it's a pity NICE has gone with PESE=PEM because otherwise the two terms could have been useful for covering both approaches while keeping them separate, as in pwME get PESE+PEM

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[continued]

I think it's worth keeping in mind that historically the reason for the emphasis on delayed PEM was not to describe every type of symptom exacerbation we experience but to highlight the one factor that is

a) observably different from normal, healthy post-exertional symptom exacerbation, because the BPSers want to tell us we're confusing normal effects with abnormal ones, and

b) observably different from post-exertional symptom exacerbation in other illnesses that often also feature disproportionate symptom levels and prolonged recovery

There's always been recognition that delayed PEM is not the only type of post-exertional symptom exacerbation we experience. However, we don't currently know if the other types are linked to the same underlying mechanisms as delayed PEM or if they're more related to the sort of post-exertional symptom exacerbation that also happen in other illnesses, or something else entirely. Until we know more it makes sense to treat them as potentially separate phenomena

[continues]

 

[continued]

Keeping the distinction for now also makes practical sense

One, it can be helpful in diagnosis and in creating more homogeneous research cohorts, helpful in the sense that the presence of delayed PEM is strongly supportive of an ME diagnosis whereas absence of observable delayed PEM doesn't preclude a diagnosis

Two, it's a starting point to focus research on as any hypothesis must be able to explain how the delay could occur even if not everybody experiences it

Three, it is the best way we have to explain to others that we can look and even feel reasonably ok when we meet them only to crash from that meeting hours or days later

[continues]

 

[continued]

But clearly we also experience other time courses of post-exertional symptom exacerbation. Some may actually be hidden delayed PEM because IRL who can tell if their current crash is due to what they just did, or did 6 hours ago, or yesterday, or two days ago, or a combination of 12 hours ago and 2 hours ago or ...? Unless you're able to pace to a level where you can get out of the rolling roil of overexertion on top of overexertion it's nigh on impossible to discern a delayed PEM pattern even if it's there. And even then you might need years of experience to spot it

There's also been plenty of discussion about how many pwME experience different symptoms and often more immediate onset from cognitive, sensory or orthostatic exertion compared to from physical exertion

So there's plenty that needs to be carefully described and disentangled. Describing carefully means being clear about how we're using the terms so we don't loose what's observably distinctive and abnormal about ME-PEM versus more general post-exertional symptom exacerbation

I fear the horse may have bolted with respect to the term PEM (general) itself. These days it is being used to refer to any symptom after any exertion in anyone. In a way that makes the emphasis on delayed PEM more important than ever, if only to make the point that our ME-PEM is both an abnormal and a distinctive response to exertion. I don't know how best to get that message through in a succinct way while at the same time making it clear there's a broader experience of post-exertional symptom exacerbation

 

Not much to it, but seems relevant to the discussion, and a bit confused.

Recognizing the role of fibromyalgia in post-exertional malaise
https://www.cell.com/trends/endocrinology-metabolism/abstract/S1043-2760(25)00045-1