PEM discussion thread

I also forgot to mention that I was vaccinated (tetanus, rubella and Hep B) during that 6 months period, and it was after the second Hep B jab that I started losing stamina. I could no longer walk to school and started taking the bus.

 

I didnt' spell it out in my interview, but I believe that if you observe that you *can* get away with, say, 40 mins power walking, or similar, and don't get PEM or a crash, and your general well being doesn't go down, then it's good for you. (ie. better than lying in bed 24/7, which some of course have to, & is shocking, but if you don't, then ....).

I am biased, though, as I am a exercise-type person - an endurance runner, both before & after my illness, and always into sport & the outdoors. I grew up believing that fitness is good for you, and of course I found out the hard way that exercise is VERY BAD for ME/cfs.

 

I was a marathon runner and continued to run after I had ME. I became ill in 1991, and PEM wasn't even a term back then, delayed PEM was the most bizarre thing I ever experienced. I would recover a few days after exercise and felt I was back to 'normal', but over the next couple of years of running/PEM, I realized that I was actually worse.

 

As far as I can remember from Staci's story about the runner, they weren't convinced she really did have ME, functioning at that level, until they did the two day exercise test with her and that was felt to be conclusive evidence of PEM along with the other symptoms. They think you can have PEM but function at a whole range of levels depending on your level of fitness before you developed ME.

 

Unfortunately, this is not universally true. I thought I had figured out my PEM boundaries and exercised within those boundaries. My condition gradually deteriorated over years.

We dont know what PEM is and it's very likely that the symptoms we call PEM are downstream of the actual problem. We know that there can be up to a 3 day delay between triggering PEM and symptoms becoming apparent. So PEM can take place before or without us being aware of it.

As we don't know what PEM is, we don't know the trigger mechanism, I don't believe we can say that deterioration or even damage can't be done just because we're not experiencing PEM.

I certainly wouldn't say that pwME do nothing at all but I don't believe we can say that the symptoms of PEM and staying below them is necessarily safe either.

The reality is we don't know. I would hate to see someone else who was as careful and disciplined as I was (once I understood my PEM pattern) do what I did and end up housebound for the majority of the time and sometimes bedbound.

 

Another whole complication of this situation with PEM is orthostatic intolerance - 'doing' nothing except being upright - and underestimating how much PEM that causes! I've interviewed someone oblivious to this, but who then could make a big difference to how they could function when they realised they they did actually have some degree of orthostatic intolerance and took that into account when organising their activities.

 

I suspect we are seeing both

• an immediate response to orthostatic intolerance, that is distinct to PEM and is more akin to what we have elsewhere described as increased fatiguability, that is those situations were activity results in fatigue much more rapidly than it would have been pre-morbidly,
• and also that orthostatic intolerance if resisted can also trigger subsequent PEM and/or contribute with other activity to trigger PEM.

Short term effects of orthostatic intolerance, if I lie down straight away, seem to dissipate rapidly having no medium or long term consequence, whereas prolonged remaining upright can trigger PEM and make other activity more likely to trigger PEM, which then takes much longer to resolve. It is harder to distinguish these various components when worse, such that the minimum basics of daily living are themselves triggering PEM, such that there is more or less continuous PEM.

 

I don't know if I experienced orthostatic impairment during my earlier years of PEM. I certainly didn't have any issues being upright or distressing symptoms of OI back then. I developed OI after a relapse from taking immune modulators in 2002 that reactivated both HHV6 and EBV. It was after I recovered from the viruses (3 months later) that PEM/w/OI started. It's certainly more distressing and scarier than my previous PEM experiences.

 

I can not say when orthostatic issues began for myself, just when I became aware of them. It could be mild orthostatic intolerance fed into fatiguability or subsequent PEM much much earlier than I was aware of but because by itself it was not a limiting factor on what I did, ie there was nothing distinct to my other ME symptoms to draw my attention to OI itself.

My first inkling was over fifteen years into my ME when I realised that resting in a chair with my head unsupported was much less effective than resting in a chair with my head supported which in turn was much less effective than resting lying down. I did not have an explanation of this other than a tentative assumption that it related to the physical exertion involved in maintaining the different postures, lying flat involving the least physical exertion.

It was only after I had become aware of the concept of orthostatic intolerance, and with worsening health, when being upright of itself began to limit what was possible for me to do, that is length of time being upright brought activities to a halt before any negative effects from any exertion kicked in, that I consciously was aware of having to pace being upright as well as other activities. It was only then that I realised an activity could continue much longer lying down than being upright, eg computer use.

There is some suggestion (as always can not remember the references) that everyone with ME experiences some degree of orthostatic involvement when measure by the interaction between posture and blood supply to the brain, however it is a truism to say that not everyone with ME is consciously aware of this. That awareness only kicks in when it has a more marked immediate impact on our symptoms and becomes a limiting factor on what we can do.

 

I think I had neurally mediated hypotension earlier on and it resolved on its own.

 

Copied post.
Discussion of PEM has been moved from a thread where it was taking the thread off topic.

I've always interpreted the variations on "PEM is thought to be unique to ME" as:

1) a defensive response to the wilful or ignorant confounding of PEM with standard exertion intolerance, and

2) as meaning it hasn't been found yet in any other disease, apart from Long Covid now, where we've looked - but of course we've barely started looking, least of all in rare diseases.

The most important thing to my mind is that PEM is a core feature of ME, whether unique or not, and the biggest danger now that more people are using the term PEM outside ME is that it simply becomes a synonym for the more common exertion intolerance and the strange pattern of PEM gets lost in that.

It would definitely be good if PEM was looked for in other diseases (as long as we can trust the people looking that they can tell the difference between PEM and exertion intolerance, not a given), you never know what you might learn in the process.

 

Moved post

Agree on all this. But would use the word distinctive. I think PEM is 'exertion-intolerance' but not vice-versa? The variations across (and within I have different PEM for different things) ME-PEM probably also give clues e.g. the sleep and immuney type bits. It's also at a patient level a reflection of the cloth-earedness they've come across if they've had it a long time, requiring a 'stop. listen. it's not what you assume' phrase (describe PEM perfectly in good detail with proper nuanced scientific curiosity and it gets deliberately misheard, received or mislabelled as fatigue or some generic which always seemed a disappointment - 'brain fog' is now the latest one for that).

There is the separate issue of which illnesses are allowed a 'sicknote' from the 'treat with exercise' ideology NHS has developed. I think the 'unique' is to be polite re: the unfit presumption, and precise for tact e.g. "I'm not saying your physio changes over the years is wholesale rubbish, just that it doesn't work for me". And yes, getting rid of PEM and muddying the understanding of it, is I think key for the BPS - just read one of the FOI releases (from the 'less rehearsed' psychiatrist) saying 'this is a guideline for PEM/PESE not ME/CFS'. It (ME guideline) should be a guideline for this, defined properly. So be careful somewhat (tendency to just have 'generic PEM clinics').

Point 2 in summary: I agree that a PEM/PESE-based stream of research wouldn't be a bad one to develop (at least it steps it out of the fatigue clinics and measures), it is obviously medical indicating something medical and scientific and a big clue for other things. Could help other conditions. Might be different types even within the few illnesses like Long Covid where the cause is the same. Can't really separate out who has what anymore either, as per below, and comborbidities, but also I suspect distinctions existing today might be looked back on as arbitrary in certain areas if new genetic/immune-focused areas get developed in medicine.

Go at it from a 'if all these people have it with various different other body-part issues and symptoms what could be the commonality underlying it' and find out types of PEM/PESE and underlying pathology/process across other diagnoses?

More detail on why:

ME/CFS diagnosis is a dumping pot of generally untreateds. We have 3 different illnesses/cohorts for that term: those registered as having it at GP have high misdiagnosis rate (many go on to have other comorbidities or misdiagnoses like RA etc) but most have PEM; scientific research - only ME/CFS with PEM but more mild-moderate band (due to logistics); BPS research cohort mildly fatigued people without PEM that they report in their results - 'Krypton Factor filtering/treatment' + not reporting drop-outs whittles any out. The latter are sourced from their increasingly 'bums on seats' supply-led 'fatigue clinics'.

The GP 'cohort' is iller than both research ones and almost the opposite of the BPS reported ones, and seen and investigated less thanks to the old hypochondria guidelines. That bucket isn't 'clean' and has all sorts of comorbidities likely untreated too as well as badly-managed longstanding ME (which is different). Noone has gone through that bucket to sort them out re: what they can actually treat, help with or get to the bottom of.

From what I hear of friends who have been abroad and come back with serious non-ME conditions/generational comparisons it seems in UK the 'access' to diagnosis for other illnesses has a higher bar only possible once a lot of damage has been done ie those who'd been under treatment for years abroad as pretty bad told they wouldn't get a UK diagnosis until they significantly degraded further (Nice guidelines covering private too). Are those who never went abroad also in this pot? So do they actually know much about 'early' illnesses of those kinds anyway to 'bottom up' that? Is this actually a 'PEM/PESE pot' as it is, and the answers to that is an edict telling people to investigate us all properly?

 

I appreciate this original post was almost 4 years ago now but I've only just found the forum!
Andy - in this theory - would the 'exertion' that people are in PEM from include basic background bodily process such as breathing, pumping blood around etc etc?

 

My guess would be that all those processes must count as 'exertion', and this would explain why people with severe ME can suffer from PEM, even when their visible activity is so low, because their sustainable exertion limits are also low.

 

Yea I quite like that theory. It's also quite terrifying / dystopian! Like the body is at war with itself. Maybe a lot of illnesses are like that.

 

Posts moved from this thread

One thing about my ME is that I never noticed any reduction in my physical ability. I didn't do any fancy tests with fancy lab equipment, but my ability to dig large volumes of soil, or handsaw firewood, or ride a bike up steep hills, didn't seem to change. Other PWME reported still being able to continue their bodybuilding exercises (that sounded way beyond my physical ability). We might be a minor subset of PWME, but the fact that we do exist implies that the reduction in physical ability isn't an essential part of ME. My guess is that it's a common downstream effect of ME, and that studying it is unlikely to lead to the core dysfunction of ME.

 

@Creekside

How do you feel after cognitive energy expenditure?

 

These are probably pretty reasonable parameters for including people in studies and such, but my own experience runs somewhat counter to this. I think whatever ME is, it can be much milder than we generally think.

In between a fairly significant episode as a teenager and my current sorry state a couple decades later, I was able to do all kinds of things (climb mountains, bike for days, handle many truckloads of firewood, and so on), but I definitely still had ME, i.e. a limit beyond which I suffered PEM and reduced capacity in the days, weeks or even months that followed. Whatever it is that has gone wrong in one's body in ME, it was still wrong in mine, just only to the degree that I had to push myself in very specific ways to go past my limit. While I don't think this is common, I don't think I'm the only one with a similar experience.

Sometimes I wonder if studying people who have only very mild ME, like I had, may give some insight by stripping away the differences between patients and controls due to lack of exercise and potential compensatory mechanisms.

FWIW, my own experience of PEM when my limit was high seemed quite compatible with a cardiovascular mechanism. I could do exercise that only used part of the body, like road biking or hiking, all day long, but I could hit a limit by cross-country skiing, which uses most of one's muscles, at medium intensity for just an hour or so. It was only sustained demand at significant cardiovascular output that pushed me over the limit.