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

[Peter T]

My memory is unreliable, but I am sure there have been attempts to create such questionnaires or brief assessment tools devised to help doctors work towards making a diagnosis in other conditions. I think I recollect similar tools for dementia and for distinguishing dementia from dysphasia. It would be useful to understand how such tools are used in other conditions and know how useful they have proved to be.

(It is likely that my experience relates to the 1980s or 1990s and involved therapist initiated projects, which may or may not have had any take up by doctors.)

 

[Jonathan Edwards]

My memory is unreliable, but I am sure there have been attempts to create such questionnaires or brief assessment tools devised to help doctors work towards making a diagnosis in other conditions. I think I recollect similar tools for dementia and for distinguishing dementia from dysphasia. It would be useful to understand how such tools are used in other conditions and know how useful they have proved to be.

In all my time in medical practice i never used a questionnaire to diagnose anything. Other health professionals frequently dream these things up but in a sense using a questionnaire is an admission that you don't really know what you are looking for so have to borrow some other "experts' " words.

There is an element of the standard clinical assessment called "On direct questioning", which comes after the presenting complaint, the history of the presenting complaint and past medical history and before drug history, allergies and examination. But even that does not specify any particular wording and certainly not asking subjects to write things down. There are some very standard questions but they all relate to impairment of cognitive function: "Who is the prime minister" "What year are we in".

 

[Sasha]

in a sense using a questionnaire is an admission that you don't really know what you are looking for so have to borrow some other "experts' " words.

But isn't that the situation that we are in, in general practice, regarding ME/CFS? GPs don't know enough about it to be able to make a diagnosis.

There is an element of the standard clinical assessment called "On direct questioning", which comes after the presenting complaint, the history of the presenting complaint and past medical history and before drug history, allergies and examination. But even that does not specify any particular wording and certainly not asking subjects to write things down.

I imagine this 'questionnaire' as consisting of only a couple of questions, that the GP wouldn't necessarily be reading off a cheat-sheet, and not having the patient write things down. Not sure if that's how everybody else is imagining it, but if it were like that, would you like the idea?

Like what @Bivox does:

@Bivox (Krisitan Sommefelt) shared the kind of question he uses in clinical practice:

[I ask] "What happens if you do very much more than you usually do because you want to or have to? First, being physically very much more active?"

I continue "What happens in the following day/ days? Do you feel better?" If they say yes, they don't have PEM. If they say they feel very bad and can do much less of any activity compared to before the activity they might have PEM.

I then ask the same question about social/ cognitive activities (use a bit different words - age dependent). If I get the same answer (i.e. much more symptoms and definite reduction in capacity for activity, then they have PEM.”

I then ask them to describe how they feel/what symptoms they have in the period they can do much less than normal and feel bad. I ask what the maximum duration typically has been. They usually say > 1 week.

 

[Verity]

But isn't that the situation that we are in, in general practice, regarding ME/CFS? GPs don't know enough about it to be able to make a diagnosis.

Yes! But the solution to that is for them to learn, not to roll out a questionnaire that may give them false confidence in their ability to diagnose it accurately.

 

[Jonathan Edwards]

But isn't that the situation that we are in, in general practice, regarding ME/CFS? GPs don't know enough about it to be able to make a diagnosis.

So they need to learn and understand and when they have they will have no need for a questionnaire.

I imagine this 'questionnaire' as consisting of only a couple of questions, that the GP wouldn't necessarily be reading off a cheat-sheet, and not having the patient write things down.

I have explained various reasons why doctors do not have verbatim questions. If the patient has made it clear that they have PEM in their own words in the 'history of the present complaint' then no further questions are needed. If the doctor has doubts about interpreting what they are being told - if for instance the patient's account is "Hi doctor, I have discovered that I have ME, MCAS, POTS, EDS and dysautonomia and I have this huge PEM." then they need to go back to first base and ask some different questions.

I agree that we want doctors to ask questions relevant to what we think PEM is but as soon as you start standardising you detract from good human communication. And it is pretty clear that we aren't actually agreed what the boundaries of 'real PEM' are. Which is not surprising since PEM is not a proven biological process. It is an idea that has evolved that seems to pick out an aspect of the illness. Members vary widely in their 'lived experience' it seems. It may be a meme that in two years time we bin.

 

[Jonathan Edwards]

Like what @Bivox does:

These are good questions but they do not have yes no answers. they elicit further narrative. That then has to be interpreted. So this is nothing like a questionnaire. It cannot help researchers. You cannot specify as criteria that you will include subjects who say "Well doc, if I were, say, to mow the lawn, Jesus, I would be in such trouble..."

 

[Sasha]

If the patient has made it clear that they have PEM in their own words in the 'history of the present complaint' then no further questions are needed.

Even several years after I got sick, I wouldn't have been able to make it clear that I had PEM because I hadn't noticed it. I'd just got used to feeling rubbish for ages after extra activity but hadn't thought about it as a 'thing'. I never mentioned it to my GP because I'd forgotten what 'normal' was. It was only when my dad pointed out to me that I was worse the day after an activity than on the same day that I became aware of it. If I'd been asked some clear questions by my GP about PEM, though, I think that would also have made the penny drop.

 

[Peter T]

Even several years after I got sick, I wouldn't have been able to make it clear that I had PEM because I hadn't noticed it. I'd just got used to feeling rubbish for ages after extra activity but hadn't thought about it as a 'thing'. I never mentioned it to my GP because I'd forgotten what 'normal' was. It was only when my dad pointed out to me that I was worse the day after an activity than on the same day that I became aware of it. If I'd been asked some clear questions by my GP about PEM, though, I think that would also have made the penny drop.

I was the same, it was not until I was some ten years in, and five years after having had to give up work, that the variation in my ME began to make any sense at all; only once I had come across the concept of PEM, had identified my gluten intolerance and became aware of OI that I had any chance of predicting how I might be from day to day, though underlying variation in my ME continues less predictably on a longer time scale.

 

[duncan]

I'm sorry if this is redundant.

What if PEM is peculiar to ME/CFS as most of us have posited?

What if all these new diseases that claim PEM have - at least some of them - PEM, and that they've evolved into a condition where the Decode ME genes are activated?

A qualified questionnaire might be doing all those folk a favor.

Not many of those patients would accept that, I fear.

But the intent would be spot on.

 

[Jonathan Edwards]

Even several years after I got sick, I wouldn't have been able to make it clear that I had PEM because I hadn't noticed it. I'd just got used to feeling rubbish for ages after extra activity but hadn't thought about it as a 'thing'. I never mentioned it to my GP because I'd forgotten what 'normal' was. It was only when my dad pointed out to me that I was worse the day after an activity than on the same day that I became aware of it. If I'd been asked some clear questions by my GP about PEM, though, I think that would also have made the penny drop.

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.

 

[duncan]

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.

As an interim? Until we have a pathology-tool?

Patients have to deal with more than mere diagnoses. They have to provide proof. They've employers, disability agencies, family and friends, etc, they have to demonstrate disease.

Things that can help are things that can help.

 

[Simon M]

it is imperative that a physician or nurse specialist who has enough experience of ME/CFS to make a reliable diagnosis gets to do the recruiting. Otherwise you are just wasting time. For studies like GWAS the practicalities are more tricky but DecodeME probably did as well as it could have.

Indeed, but using that logic, and without making an exception of it, DecodeME is in the same category. I don't believe that's the case for the study or its cohort, because I think questionnaires can capture valuable information.

My real concern is that people who don't have ME/CFS will see these things on the net and convince themselves they have them. Judging by my experience with other diseases like RA and lupus there are usually more people who think they have a chronic disease than actually have it.

I don't think these things are widely seen on the net, though there's plenty out there about ME/CFS in general. What we do here is a pretty niche pastime and doesn't get discussed widely. If they see anything on PEM, it's far more likely to be Lenny Jason questions that have been around for years. And they are pretty generic.

Above all, what I think we need is a new study and new data. It might not give definitive answers, but I think it will move the discussion forward.

And we can and should have a debate here first about what are the core features of PEM. It's the kind of thing this forum does so well.

I feel the experience of pwme of an unusual symptom that only patients experience is pretty valuable. Particularly where there is open debate and challenge of ideas.

The few studies we have do seem to suggest that duration differentiates ME/CFS from other diseases.

I agree with that. And we know that because of a questionnaire survey used to collect the data. We need more of these kinds of comparisons, and this study aims to do it.

o they need to learn and understand and when they have they will have no need for a questionnaire.

I agree. And when they do (people have been working on this for decades), we won't need a questionnaire any longer. Meanwhile, I've been ill for thirty years and have seen no progress (and I've had to see far more doctors than I would have liked in the last few years: ignorance and prejudice remain the order of the day).

I think if people want a definition of PEM that is as sensitive and specific to ME/CFS as possible, we need studies rather than either patient consensus or clinician consensus. And we have to be open to finding that PEM, defined in words, is not as specific to ME/CFS as we thought

Which is what the questionnaire study aims to find out. Let's start with patient and clinician discussion. Then let's see how those ideas shape up in the view of a large and wide selection of PwME - and those with other illnesses.

 

[Mij]

I would have never received a diagnosis of ME/CFS because I didn't experience PEM or delayed PEM until years later.

 

[duncan]

I would have never received a diagnosis of ME/CFS because I didn't experience PEM or delayed PEM until years later.

PEM shouldn't necessarily be a qualifier. It should be proof. You don't have to have it for an ME/CFS diagnosis, but getting it cements the call.

 

[bicentennial]

Does a malaise qualify as being acutely ill?

I describe it as being acutely ill (etc etc etc in detail). Is this correct?

It took me a long time to cotton on that "etc etc etc in detail" was not computing, but "acutely ill" might be understood. Except that upon onset I said I am very ill, its crippling me, but was not believed so i began to give more and more detail which wasn't wanted either

It took a biomedical scientist to give me the further term "acute-on-chronic". To me this means the acutely ill phases of chronic illness

So I don't understand why these terms are not applied. If the "malaise" is a bit more than being unwell, if it is being acutely ill, then "malaise" is as distancing and trivialising as was "fatigue".

Maybe it was picked because it infers an unknown pathology. But can't I be acutely ill without known pathology?

Can't it be established that I am acutely ill when I say I am, and its acutely incapacitating (and not necessarily fluey etc etc?

And can I have crippling encephalopathy without known pathology?

If so why call it brain fog instead, or cognitive impairment, when its a partial brain failure being detailed (only after many years of bewilderment). The details are differentiating and very significant.

I agree it needs a lot more discussion, and also some more naming.

 

[Sasha]

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.

It wasn't that it was subtle - it was subtle as a brick - but I must have either forgotten what was normal or had the mindset that it was 'normal for illness' to feel worse the day after something than on the day and so hadn't bothered to think about it. It wasn't suggested to me - it was pointed out to me, at which point I recognised it.

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.

I thought we'd agreed, in the various factsheets that we've been putting out that PEM is the thing to look for in order to make a clear diagnosis of ME/CFS.

 

[AliceLily]

.

Even several years after I got sick, I wouldn't have been able to make it clear that I had PEM because I hadn't noticed it. I'd just got used to feeling rubbish for ages after extra activity but hadn't thought about it as a 'thing'. I never mentioned it to my GP because I'd forgotten what 'normal' was. It was only when my dad pointed out to me that I was worse the day after an activity than on the same day that I became aware of it. If I'd been asked some clear questions by my GP about PEM, though, I think that would also have made the penny drop.

Same here Sasha. I was working fulltime when I got ME. I first noticed something had changed cognitively and I was having unusual exhaustion and feeling very unwell. I could not work it out. I ended up on the terrible spiral to very severe ME. I wish there had been well known knowledge about how ME shows itself out there. Looking back I can see the PEM episodes I had in those years but I had no idea at the time what I was experiencing.

 

[Jonathan Edwards]

Indeed, but using that logic, and without making an exception of it, DecodeME is in the same category. I don't believe that's the case for the study or its cohort, because I think questionnaires can capture valuable information.

I think the GWAS context is very atypical. The hope is that by adding a questionnaire you get close enough to a biologically meaningful category of subjects to get a statistically significant result on signals you know are going to be causal with big numbers. For nearly all other research the situation is worse. DecodeME showed that its entry criteria for ME/CFS picked out a distinct biological pattern but whether our current concepts of what that pattern is are anywhere near appropriate is still very much up in the air. The PEM question may have refined the category or diluted it - we don't know. A different questionnaire that we think more closely reflects our concepts of PEM might do better or less well - who knows? The concept of 'Rubens's style' turned out to be no guide to who painted the pictures. Nearly all of them were mostly painted by his students. That was the deal in those days.

I don't think these things are widely seen on the net, though there's plenty out there about ME/CFS in general. What we do here is a pretty niche pastime and doesn't get discussed widely. If they see anything on PEM, it's far more likely to be Lenny Jason questions that have been around for years. And they are pretty generic.

But that's the point. If you manage to get a new questionnaire based definition then all the media readers will latch on to it. If you don't you have not got anywhere. Catch22.

And we can and should have a debate here first about what are the core features of PEM. It's the kind of thing this forum does so well.

I sort of agree but this is doing things backwards, assuming that there is something called PEM that has core features. What if PEM is just a bad stab at some aspect of ME/CFS that has other core features we haven't latched on to? Sasha didn't even know she had PEM for years. It reminds me of the bearded tit, which some time back people realised probably wasn't a tit so they renamed it the bearded parrotbill because it seemed likely to be an aberrant member of the parrotbills, which are related to laughingthrushes. When the DNA evidence came in it turned out that bearded tits, together with swallows, are pretty much sort of warblers.

Or, to use another analogy, when Jerry Fodor, the linguistics guru, remarked of intentionality (the property of human thought to 'refer' to the outside world) the "whatever it is, it must be something else".

Ralph Waldo Emerson lurks.

 

[Jonathan Edwards]

It wasn't that it was subtle - it was subtle as a brick

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.

 

[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.