Should we initiate development of a new, short questionnaire to identify PEM (to aid diagnosis)?

[Kitty]

the causal relation, which is the core of PEM, was not obvious and had to be suggested.

It doesn't work like that for everyone. Mild and moderately affected people can't 'see' PEM if they always have PEM because they're trying to live in the normal world.

I'd no idea there was something additional to baseline ME/CFS symptoms—something I had a chance of mitigating, unlike the underlying symptoms—because I never saw any difference. It would have been like trying to separate water from water.

Until it stopped being PEM, and became a crash that involved many months off work. Then I saw the difference between the always-present symptoms and the additional ones that flared if I did too much. I realised the swollen neck glands and the sore throat weren't a perpetual cold, they were a helpful warning not to make things any worse. I didn't know the exacerbation was called PEM, but I understood it was linked to overdoing it on the activity.

Ultimately it IS all water, of course, but the separation's still useful for management and diagnosis.

 

[AliceLily]

I don't think so; the symptoms were "as subtle as a brick" but the causal relation, which is the core of PEM, was not obvious and had to be suggested.

A cardinal rule of taking a history in medicine is that you do not ask leading questions. You do not suggest causal links. This is why PEM is so problematic as a datum. It isn't. It's an interpretation already.

It's the best interpretation I have heard of my experience of ME PEM. Finally, I could see my experience in the way others were also experiencing ME. This is a hard illness to do on your own without medical understanding of what is happening to us in our bodies with ME.

When you get ME you have nothing from past experience to relate it to. PEM is ME's hard warning that you have really gone too far, it is telling you that if you continue in this way it will get even nastier. PEM is a hard knock down.

I had bouts of PEM in my earlier years of ME when I didn't know I had ME. It was all to get much worse because I didn't understand the ME symptoms and the added warning it gives with the hard knock down PEM. I only knew something was very wrong because I had never experienced anything like this before.

It's all quite hard to express but thank you for your thoughts on all this.

 

[bobbler]

Now, hang on. PEM is such a subtle thing that you can have ME/CFS for several years without knowing you have it? It has to be suggested to you? That seems to mean that asking about PEM is not a reliable way to identify ME/CFS. Which wouldn't surprise me.

I think we are a long way away from knowing exactly what in the history we should be identifying as diagnostic. PEM is a start but I strongly suspect that to enshrine it in a dogma, with a questionnaire attached is not the way forward.

The issue is rolling PEM rather than subtlety I’d guess - getting breaks between PEM and not having just layers and layers of hits of PEM and all the other types of exhaustion and fatiguability, and/or enough time for whatever rolling PEM has built up to wear off. And some won't be getting that. It's actually pretty hard to get an environment near to the needs of any level of ME/CFS (as there is the sensory and cognitive as well). And being ill even for a short-ish time by comparison comes with stressors pretty quickly.

So whilst I would say from when I was decades in and working that I could tell from having 9 days in bed and then just about by the end of it being approx back to where I was and there being a pattern because I had some working from home days, this wasn't the case for most of my time being ill and I didn't have the hindsight I'm having to look back on those years with.

And that whilst we all now criticise the behavioural stuff and can see that issue clearly, at the point I and I guess many others got ill (and I don’t know how much would have been due to pen not being known about) I was probably judging myself as I was used to forcing my body to get up and do the right thing at the right time and assume it will be hard whilst still ill but naturally as whatever illness wore off then it would get easier. But then my body just gets out of control on me.

And the more ill I am (affects my sleep first) the more frustrated everyone is and their silly presumptions come in that are always caveats with faux sympathy but even then assumed madness and behavioural first and however they sugarcoat it everything to do with that involves brutality and feels like coercion control because it is: making you responsible for your body not behaving as it should when they force you to get up at a set time assuming that will stupidly mean your sleep will be more deep instead of even worse. You can’t stand noise just when everyone is shouting and not sympathetic. You are being asked complex questions about ‘why are you acting weird’ by people who don’t intend to listen to the answer (awful for confidence) just when you are so exhausted you can’t word-find and the task of working out how to explain symptoms is extremely hard anyway because it’s an onslaught of them and you don’t have that hindsight we have many years on.

There’s nothing subtle about it and I’ve been thru some very quickly dangerous times as without being fortunate of having someone not callous stepping in and shielding you from that onslaught the deterioration in your body is incredibly incredibly fast and then you get called mad (because behavioural) so it’s utter terror too as you having this threat levied at you very quickly too,

Whichever symptoms’shows’ most the medics and teachers etc have been trained to zero in on one ‘failure’ be it being late, falling asleep, losing weight, not talking properly and don’t think illness but want to accuse and think disorder to be labelled and behaviourslly managed for without hearing eg you are exhausted too and need rest. Your voice is totally disappeared with every single person no matter how smart you are vs that person and everyone talks behind your back as a problem to ship off in v simplistic terms without even asking you a question of what’s happening because propaganda has allowed them to treat you like a non person.

Over the years it been many times I’ve been thru this and having a diagnosis barely changes anything other than having a consultant who that means something to. Over several decades it’s the same old crap from every other professional even when they have the info in front of them. It’s systematized. Because the bs scaring them about liability means they are looking to sign you off to wrong places lying to themselves those places would care about differentiating if it isn’t something mental but ‘in case it is’ they feel required to do it ‘because if they didn’t it’s on them’. So that mental health don’t know anything about it, not your place to decide it’s not if you aren’t an expert etc has so much force.

So there is something very significant indeed to change there

I am going round in circles as I agree on all points - that it’s not a questionnaire but a specialist spotting the hallmarks of someone in rolling PEM and a deterioration being ‘bullied’ that is needed not just chilled out patients who might have mild me/cfs casually able to show pen as they have room to underperform without being shouted at or controlled and/or in an hr process and family screaming that you’ll lose your job etc making the illness worse . Nothing will fit a questionnaire until you’ve rested off that and the stress from what others do has died down as a threat and it takes months to even start to recover after being thru that

I suspect that where imagining the long covid situation being the recent big numbers is confusing because it’s such a different potentially scenario as lockdown meant more home working and covid tests and knowledge it might go long meant those with that in those years had a totally different situation in specific ways.

I’m very cautious that whilst once you’ve some sort of plateau the PEM and threshold being understood is vital to not deteriorating you further by those limits and impact being understood, it is also an illness and not ‘a fatigue disorder’. and people just don’t know how whilst quietly overdoing it by x% might strain like heck but you compensate doing ‘the swan’ for x months so it then hits others like a surprise at 6months (eg of doing an extra day a week) when that boom hits then you really are in a desperate situation without serious and quick intervention massively reducing all strain for months and will if then trying to carry on deteriorate so fast and so far it really will shock others. You won’t sleep for days for example but also can’t function in anything until you’ve had that deep sleep, whilst those watching are just expecting being a bit more tired and at that too little too late point if they let you have a later start time then you’ll get your feet back under you - but that sux months too late.

So there are different things needed for different scenarios.

 

[Peter T]

The delayed aspects of PEM make it harder to spot any patterns beyond regular crashing, but also for me it further was confused by the additional issues of gluten intolerance and OI. In particular my gluten intolerance operates on a similar 24 hour delay and overlaps symptom-wise with PEM. Back when I was working when at work I relied on sandwiches and easy to prepare fresh pasta, only cooking other food stuffs at the week end. Further additional issues of unrecognised gluten withdrawal, migraine, nausea, IBS, etc, plagued my weekends when I was able to prepare a more balanced diet.

It was only once I had stopped working, eliminated gluten from my diet and was able to spend enough time daily lying down that it was possible to spot these over lapping patterns.

 

[bobbler]

I can see usefulness in many of the ideas. Like a diagram showing the differences between what is fatiguability, ‘fatigue’ (there are different types that are obvious here too that get lumped under this term, pem

And whatever people are now calling exertion intolerance

And differentiating these from normal people’s fatigue, tired, pef, doms.

I think that also helps patients so they can start to learn to understand what is going on and can start to have a vocab and see what phenomena are overlapping. As well as others being required to stop deliberately muddying it all because they don’t actually give too hoots and want to lazily just term it ‘tired’ etc


I can see for real specialists that are medical consultants that the description of the clinical features is better. As are some of the more personal ‘this is what it feels and appears like in a real life situation’ and having hallmarks and quirky aspects in that. And noting how different it will feel and look depending on if it’s a kid still trying to turn up to do their exams and sport and everyone assumes they are behavioural and the tense atmosphere with little kindness or if it’s someone who got COVID then knew they haven’t got right since as they gently tried stepping up back to more hours and it pem’s them each time.

I think we have the issue that it’s GP that is the gatekeeper with probably some allied ‘health professional’ or teacher getting their opinion inveigled first with their loud ideas they are sure on labelling someone with that differential sifting /triage is really going through. And I think for this more than a questionnaire is needed but …

So we probably do need to blueprint the politics and different materials being propaganda’d at them from other sources too to see what we are tackling

And of course the clinics are mostly hcp who can only do questionnaires because rightly or wrongly (depending if they go off piste in a bad way vs good) they aren’t trusted to do it another way. And the bad ones others give them are used as a way to brainwash misinformation regarding what PEM is into them and to push them to offer certain unhelpful treatments as priorities etc.

So I think this has been a hugely helpful question but I think the answer isn’t just one thing

But to keep it short and useful then it will be different things specific to really specified scenarios … but also making sure they jigsaw into a bigger coherent picture. So no one can play sophism pretending these things contradict each other. And so that hcp s don’t think they are just training people to avoid PEM instead of seeing people with an illness

And yes then we have both research needs and making sure employers and the general public understand the ‘get worse if continually stuck being required to go over threshold’ and that PEM explains the ‘well you seemed able to do that box lifting at the time ‘ bigotry thinking etc. Plus that we aren’t suddenly’lying in bed all day’ due to no reason and they know it because many of us will have by similar people been pushed in the six months preceding who played their part in causing that deterioration with their callous indifference then try on pretending these things sudden impact and consequences are nothing to do with that but some new madness or behavioural habit. Which was always disgusting but people are neither nice or logical when it doesn’t work for them in the main.

 

[AliceLily]

1. Doctors, especially those in primary care, could use it to help diagnose people who have ME/CFS, and identify those who don’t have PEM, and so might have a different illness.

This will be very hit and miss diagnosing by doctors but if the doctors were to give patients information on ME and tell the patient to see how their symptoms are aligning with the information over time could be helpful in the longer run.

 

[bicentennial]

... if the doctors were to give patients information on ME and tell the patient to see how their symptoms are aligning with the information over time could be helpful in the longer run.

yes a new contextual diagram to identify PEM in the mix (to aid recognition) for starters:

a diagram showing the differences between what is fatiguability, ‘fatigue’

there are different types that are obvious here too that get lumped under this term, pem

And whatever people are now calling exertion intolerance

And differentiating these from normal people’s fatigue, tired, pef, doms.

... helps patients so they can start to learn to understand what is going on and can start to have a vocab and see what phenomena are overlapping.

As well as others being required to stop deliberately muddying it all because they don’t actually give too hoots and want to lazily just term it ‘tired’ etc

 

[Jonathan Edwards]

It doesn't work like that for everyone. Mild and moderately affected people can't 'see' PEM if they always have PEM because they're trying to live in the normal world.

So, this makes it even more difficult to believe we can usefully get to grips with a PEM deinfition. If you have it all the time it cannot be identified as PE M since it isn't post anything but all the time.

Your claim presupposes that there is something called PEM that has some characteristic or identity beyond being PE. And I think that is highly speculative, even if for some people with ME/CFS they can identify the feeling. I also find it hard to see how a crash can be other than PEM if maybe the best way to recognised PEM is that it lasts for months.

I absolutely believe that people are reporting something they call PEM that has nothing to do with normal fatigue, but I see little chance of getting a consensus on how you elicit a specific history when different people are obviously using the term to cover different categories of symptom patterns.

 

[Jonathan Edwards]

It's the best interpretation I have heard of my experience of ME PEM. Finally, I could see my experience in the way others were also experiencing ME. This is a hard illness to do on your own without medical understanding of what is happening to us in our bodies with ME.

But with all due respect this is again backwards. We don't have any medical understanding of what is happening in ME/CFS!! We are going entirely on what people tell us.

If people with ME/CFS believe they have PEM because doctors have explained some theory to them then we are in deep trouble.

 

[Hoopoe]

Now, hang on. PEM is such a subtle thing that you can have ME/CFS for several years without knowing you have it? It has to be suggested to you? That seems to mean that asking about PEM is not a reliable way to identify ME/CFS. Which wouldn't surprise me.

I think we are a long way away from knowing exactly what in the history we should be identifying as diagnostic. PEM is a start but I strongly suspect that to enshrine it in a dogma, with a questionnaire attached is not the way forward.

The symptoms are not subtle, but describing how I felt was difficult. If I remember right, I usually said that I felt unwell and was too tired and had not slept well.

It took me about a year to recognize the relationship between activity and delayed worsening. Before that, it felt like I was randomly struck by sudden malaise because I felt normal between episodes. Over time the picture morphed into constant symptoms, a more obvious relationship between activity and symptom worsening, and I understood that I had a chronic illness of some sort.

 

[bicentennial]

Is PEM what NICE described as a relapse with more marked symptomatology, risking a more or less permanent decline, and liable to follow a symptomatic flare, unless promptly adjusting to manage the flare, but also possible anyway whether or not managing the flare?

And is PEM being acutely ill?

 

[AliceLily]

And is PEM being acutely ill?

PEM feels acute in the severer years.

 

[bicentennial]

PEM feels acute in the severer years.

Thankyou; so was it a mild phase when I could still get out and about on foot, but inbetween outings I was poleaxed for days? Bit dazed too.

Um, no come to think about it - maybe that was the moderate phase and the mild phase was when I could heave myself upstairs like a sack of potatoes, but still go out every day, mmm, I'd forgotten

 

[Trish]

I'm puzzled. If nobody can agree what PEM is, how can anybody be diagnosed with ME/CFS?

Surely we can at least agree that when we increase our exertion significantly we get sicker and this often lasts for days or weeks?

Or is even that being dismissed now as unwarranted inference from fluctuations in symptoms?

Every time we try to make some progress on grasping and describing PEM, we end up going around in circles and diverting the intention of the thread. I found that really difficult when I led the PEM factsheet project. Does this mean members disagree with what we agreed on for that project? Is the PEM factsheet wrong?

And the question on this thread is not, what is PEM, it is can we help to develop a PEM questionnaire.

We haven't yet established what we're trying to decide here. Some are adamantly opposed to having anything to do with a questionnaire doubtless for good reasons from their perspective, others are horrified by what Jason and Tyson are producing, and using in clinics and research, and we want to see if it's possible to create something better.

Have we hit an impasse?

 

[AliceLily]

I personally don't like questionnaires for the reason I remember vividly how terribly sick I was to go through the torture of a questionnaire. To me PEM is a worsening of symptoms and easy to understand when very ill, if that was explained to me.

 

[bicentennial]

... Surely we can at least agree that when we increase our exertion significantly we get sicker and this often lasts for days or weeks?

I am much happier with "sicker" or "iller" some time after straining nerve and muscle (with eroded thresholds).

Its always a relief to read it put that way.

I am not happy with fatigue or increase in symptoms. Maybe we are stuck with "malaise".

Have we hit an impasse?

There is a factsheet, here, so can a questionnaire be built from it to see what it looks like - before evaluating the proposition?

Or maybe not questions, but some other kind of tool if arising

Let's list all the possible field applications of the PEM model eg diagnosis, recogntion, education, cohort selection, exploration

Can the variegated reports which still roll in be separated and summarised, for cross-reference? But in this thread summarise the suggestions here of a few basic PEM questions or PEM facets

On reading this thread, I think it important to have a tool which is not misleading, and not leading, which requires human engagement in a clinical consultation, and facilitiates this for people who need to transition, and so this tool may stand on its own merit to be chosen over the misleading tools:

- has merit in itself to be chosen instead of those other tools

The competing questionnaires (of which there are too many already), are maybe trying to reduce it all to a formula.

Either we boycott those tools or supersede them.

I thought an aid to recognition would be good. But why cant recognition be put in a patients own words and recognised?

I could agree easily that each patient at the clinical interface needs opportunity to put it in their own words (and not just to be "validated"). So how can a tool aid recognition and elicit articulation wthout parroting.

I think clinical time must be required. Sadly, our clinics also need facilitation. The e-learning modules might not be that conducive. We can't rely on the Recommendation to implement re-training.

The doctor or nurse or physician associate needs to be informed by my report and allowed by a new convention to record the significant detail as given by me. Software is not a shortcut

I have had a lot of time to make some observations I could not have made sooner in the face of such obviation, but an open-minded doctor could have helped - by proper consultation.

Does the format of a clinical consultation need a tool to facitlitate it? The format of a clinical consultation should not need to be facilitated but we need something eminently sensible to redirect our misled gp clinics which won't get the specialist service backup promised, and barely have time to consult at all

I never again want to meet a lovely ME/CFS specialist suddenly thinking maybe its not ME/CFS after all that, because I don't get headaches (except in extremity, but there was nothing about that in the current new lexicon)

There seems to be an authorised version says PEM is diagnostic. Its hard for me to recognise what it is amongst all the muddle of models which can continue to proliferate, converge and diverge.

 

[Trish]

I agree questionnaires are a pain, and for people who are very sick they are impossible. I am envisaging something very short, the shorter the better.
Maybe as simple as:

Choose the option that best reflects your experience:
If I significantly increase my current usual activity or exercise:
1. I feel no different or better in the following hours and days
2. I feel tired and/or sore for hours or a day or two
3. I become much sicker and less able to function for hours, days or longer.

End of questionnaire.

Option 2 indicates PEF and/or DOMS
Option 3 indicates PEM.

 

[V.R.T.]

A cardinal rule of taking a history in medicine is that you do not ask leading questions

Someone should tell that to a lot of the doctors I've seen in the last nine years.

 

[Kitty]

If you have it all the time it cannot be identified as PE M since it isn't post anything but all the time.

But then we have another problem: as soon as you stop overexerting, it goes away.

It's not only defined by the time course (though that's clear enough once you've spotted it), it's defined by symptoms that are different to the underlying ones. They aren't present unless you exert beyond a threshold or are subjected to some kind of external stress.

However, if you can't stop overexerting because you have to work every day, it's hard to grasp that there are two levels of symptoms, one that won't remit whatever you do, and a second that will if you rest. They're all muddled together, and it can go on for years unless something forces you to stop for long enough that the level 2 symptoms have a chance to ease.

I also find it hard to see how a crash can be other than PEM if maybe the best way to recognised PEM is that it lasts for months.

Symptoms are different again in a crash. Vivid hallucinations, back spasms with involuntary arching like tetanus, extreme thirst that drives me to drink 8 to 10 litres a day, etc. It's a long way removed from normal PEM, I've only had it three times in 50 years of illness—it also seems to be pretty uncommon, so probably a sidetrack.

 

[Sasha]

I don't think so; the symptoms were "as subtle as a brick" but the causal relation, which is the core of PEM, was not obvious and had to be suggested.

I don't think this takes into account how a sick person's perception of normality shifts. Right now I've been in considerable discomfort for some days, or maybe weeks, with sore muscles for no reason I'm aware of. I say, 'maybe weeks' because I no longer pay much attention when things change. If my GP asked me today if anything had been different lately, I'd probably forget to tell him, because weird stuff cropping up and going away again has become normal. If this had happened to me as a healthy person I'd have been straight off to the my GP to tell him all about it.

The causal relation between my activity and my PEM would have been obvious if I'd thought about it, because I was either lying in bed all day or pushing myself to leave the house - which caused the PEM. It was very binary. I just didn't think about it enough to notice.

A cardinal rule of taking a history in medicine is that you do not ask leading questions. You do not suggest causal links.

I think the price of that may be missing PEM.

This is why PEM is so problematic as a datum. It isn't. It's an interpretation already.

It's maybe more of an interpretation than, 'What happens if you bend your knee?' to someone who has osteoarthritis but I think it's a continuum.