Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Stussman, Nath et al.

[duncan]

I am delighted whenever the voice of the patient is integrated into medical discovery. Focus groups, however, at least to this old time market researcher, smack of marketing.

 

[Hoopoe]

Participants described the pliable nature of symptoms and how successive exertion can compound symptoms. One participant explained this compounding effect:

“Two days after going to the doctor, my baseline was now exacerbated. It took much less [to cause PEM]. It could now be just having to get in the car and go get my kids, which I do every single day. I'm now unable to do because of that doctor appointment 2 days prior.”

Sounds like my observation of the effects of exertion on successive days accumulating until the PEM treshold is reached.

Just because something is safe to do for a day or a few days doesn't mean you won't end up with PEM if you keep doing it every day.

 

[rvallee]

Maybe PEM is also hard to describe because while people are experiencing it, they also have PEM related impaired cognitive function and/or bad memory so don't recall all details.

Yup. That's a Catch-22 on top of the damn Catch-22 of the disease itself.

It's Catch-22's all the way down!

 

[rvallee]

Yes, I especially agree on the latter.

All of this begs the question, how would we answer and how would we conduct a study to reveal this?

How is "feel horribly ill during PEM" to be described and contrasted to the list of symptoms in the study?

We're still stuck by the rejection to simply call this "sick", of insisting to further describe it, "what do you mean by sick?" Which basically amounts to "what do you mean by red?" It's its own concept. There is no sub-division to sickness. There are layers, sure, but it's its own thing. Yet there is insistence to use other terms because it's just rejected.

"I feel sick" is a thing. It's descriptive enough. It's what we would state during a bout of acute illness and it's what continues when it is chronic. It still has layers and variations and nuances but it mostly means the same thing. This insistence lead to the abuse of the word fatigue (and frankly malaise), largely with different meanings than what we actually say. Yet I can't figure out why the hell is this insistence for. It seems only to be all about differentiating between the acute and chronic phase, to make them wholly different from one another, something required only for the purpose and benefit of belief in alternative psychosomatic models of illness. There is no actual logical reason for this.

It's almost impossible to make progress when the only precise words are forbidden. We've been dancing around this word for decades and literally all it accomplished is to enable the perpetuation of an alternative delusional fantasy model while cementing systemic discrimination by misrepresenting this disease entirely. But it's the only accurate word. It just is. So how do we unstuck from this trap without having to completely render obsolete the concept of psychosomatic ideology, which although inevitable over the long term, is not going to resolve anything until then, a process that will take years to unfold as technology and basic research simply invalidate the last remnants of this insane ideology?

 

[Trish]

I think the term 'flu like' can be helpful in describing exhaustion/profound fatigue and malaise, in the sense that it indicates that it's something similar to what is experienced temporarily in some acute illnesses, and leads both to inability to function and feeling dreadful with multiple symptoms.

I think that's one of the differences between having a cold and having flu - with a cold you have some symptoms that are unpleasant, but can usually still function, whereas with flu, you have a few days where you can barely get out of bed.

It also distinguishes it from exhaustion after vigorous exercise, or tiredness of jetlag or too much partying in someone healthy. It feels completely different and the ability to go on functioning is completely different.

 

[NelliePledge]

when a member of my extended family asked me at a Christmas get together a couple of years ago what is ME and I said it’s like having flu a lot of the time it was understood and I Think registered as pretty serious. In my experience flu like symptoms is reasonably well understood by the sensible general public. And it’s a useful shorthand. Obviously the segment who think CV ‘is only a flu’ Are a different matter.

Unfortunately there seem to be quite a few people with ME on social media who are comfortable with fatigue as the shorthand describe what’s wrong with them.

 

[Invisible Woman]

The thing with PEM is the whole of the thing is greater than the sum of it's parts.

In the same way simply individually cooking & laying out all the ingredients for a complex dish - let's say a curry- and eating them separately does not in any way equate to eating a curry that could be made of those ingredients.

Except, of course a good curry is a thing a beauty and PEM most certainly is not.

 

[rvallee]

The thing with PEM is the whole of the thing is greater than the sum of it's parts.

In the same way simply individually cooking & laying out all the ingredients for a complex dish - let's say a curry- and eating them separately does not in any way equate to eating a curry that could be made of those ingredients.

Except, of course a good curry is a thing a beauty and PEM most certainly is not.

That's probably a very important part. It's one thing to have one bothersome symptom, or even a disabling one. But when you add up so many, along with a few that are impossible to simply ignore, it adds up to significantly more than enduring them one at a time in a serial manner. It becomes a problem in part because when you find relief for one symptom it barely makes a difference because of all the other symptoms, makes it harder to judge benefits because you simply can't apply "all other things being equal". It's a context in which something can make a real difference and yet have no meaningful impact. This is something where evidence-based medicine as it currently exists is actually counter-productive, fundamentally incapable of dealing with this.

This is something that medicine does not seem to consider at all, that the sum of multiple simultaneous symptoms is so much worse, that patterns of multiple symptoms matter a whole lot. Even though it makes perfect common sense, to the point where it's bizarre to reject this concept.

I don't think I've even seen a single exploration, let alone serious study, of this. This is one of the issues that make acute illnesses like the flu so terrible, but the experience is typically modulated by being short-lived. So short-lived it's quickly forgotten. But while it's happening it really is that much more horrible.

But as it stands, the concept of "too many symptoms" of a chronic nature is the literal modern definition of somatization. So this concept is serving as a complete blocker to a feature that is very common in all chronic diseases, "respectable" and discriminated alike. There is no resolving this issue without rendering the very concept of chronic psychosomatic illness obsolete, as the invalid proposition it so clearly is.

 

[rvallee]

Honestly this needs more thought. Come on, brain!

The very process of evidence-based medicine tries to identify meaningful differences to single symptoms on an "all other things being equal" basis. That if it's possible to measure a meaningful difference on one symptom than it should be absolutely beneficial. That even if you have many symptoms, reducing one should be significant. Must be significant.

Hence all the hoopla about "reducing" fatigue or anxiety, even though there is no way to measure those so those are usually merely different responses without a real corresponding change. A meaningful change on one symptom is assumed to make a difference overall. And yet in the context of many symptoms, it often doesn't work like that. With chronic illness like ME, it almost universally makes no difference.

It also conflicts with standard clinical practice, which reasonably works on the basis of first dealing with the most bothersome symptom. But what about when the problem is not any particular bothersome problem but the sum total? Completely unequipped. So both research, especially "evidence-based", and clinical practice fundamentally conflict with reality, cannot reconcile axiomatic conflicts precisely because they are considered axiomatic. Of course there should be one "most bothersome" symptom and of course reducing it should lead to overall improvement.

And yet if your house is on a fire, under attack by a phalanx of wild emus, in the path of a volcano eruption and a category 6 sharknado, if a flash flood is under way but somehow fortunately veers off elsewhere, although it is a meaningful difference it still makes no difference in outcome because the sum total of all those problems is simply too great. Bit more dramatic of an example than curry but it's hard to put in proper context just how disabling the sum of many symptoms can be.

 

[DigitalDrifter]

I was experiencing problems processing, which is not the same thing.

Could you elaborate on that, what's the difference?

I think patients talking to patients and working out when they are using the same words to describe different things & different words to describe the same thing is very helpful.

Definitely agree, I think researchers and the medical profession could learn a lot from this.

 

[Invisible Woman]

Could you elaborate on that, what's the difference?

I'll try - I may have to come back and try again, so tell me if I'm not making sense.

It's where I am alert and let's say someone asks me a complex question. If I go out to the chemist to collect your prescription tomorrow would you like me to buy you some apples at the greengrocer's?

It's not that difficult. However when processing ability fades if one or other of the clauses(?) in the question is an issue my brain can't handle it.

If my prescription won't be ready until the day after tomorrow & not tomorrow then I need to correct that and then agree I would like some apples.

Or I want my prescription collected tomorrow but would prefer bananas.

My brain can remember the information but can't process one part being correct and one part incorrect.

Another example would be giving simple directions - I know my neighbour Joe lives on the right hand side of my road as I walk down it. As I bet to the bottom of my road and meet someone who asks where Joe lives and turn to explain my brain cannot process that now I'm facing up the road Joe's house is now on the left side. I could lead someone to Joe's house but my brain temporarily cannot work out how to switch sides as I change direction.

So I might understand a question, I might remember the question & the information needed to answer it but still be unable to answer if I have to mentally manipulate the information in any way.

This usually sneaks up on me before concentration & memory become a problem. At first I might be able to figure the answer out but it will take me a lot longer and take a huge effort.

 

[Ravn]

More worrying to me is the way they have divided up the symptoms. I think the end result of a list of 'core symptoms' of PEM (exhaustion, cognitive difficulties, and neuromuscular complaints) is an artefact of their listing system. By choosing to list separately a whole lot of other symptoms that produce a feeling of being ill, the 'core' symptom 'malaise' is lost. I don't just feel exhausted, foggy, weak and sore, I feel horribly ill during PEM.

In my experience flu like symptoms is reasonably well understood by the sensible general public. And it’s a useful shorthand.

This may be a language thing?

Both in this study and in others before I've been surprised at how few participants endorse flu-like symptoms given the almost ubiqitous use of phrases like 'the flu that never went away' and 'I don't feel tired, I feel ill' to describe ME. It's hardly likely pwME feel like they have the flu all the time except when they have PEM. Something doesn't add up.

Two possibilities spring to mind. I, too, use 'flu-like' as a shorthand to describe the whole bundle of profound exhaustion, heavy limbs, weakness, assorted aches and pains and temperature oddities etc. etc. But maybe other people list all those symptoms separately and feel they'd double-list if they also included flu-like symptoms? Or maybe they associate the flu very strongly with coughs, a runny nose and a high fever, and feel that doesn't fit?

 

[Ravn]

The study makes the important observation that some pwME already have PEM from travelling when they turn up for their day 1 CPET. This raises the question how that influences study outcomes. Do participants with PEM on day 1 experience the same loss of performance on day 2 as participants who are rested on day 1?

If they have a less significant drop in performance because they already do poorly on day 1 due to PEM, the average study results underestimate the true drop in performance between no PEM and PEM.

If they do have the same drop in performance - so bad on day 1 on due to PEM and worse on day 2 due to PEM on top of PEM - would calling them back on days 3 and 4 and 5 lead to even further drops each time? That would explain why GET is so wrong for us, PEM on top of PEM on top of PEM on top of... Of course it would be highly unethical to conduct such a study. Let's see how many CPETs it takes to make you permanently worse, shall we.

 

[Forbin]

I've only skimmed over this, but I'm a little surprised that among the physical activities listed that can lead to PEM there is no mention (on the chart at least) of simply "standing."

Maybe standing isn't considered a physical activity (though I think it is). Prolonged standing was a major issue when I was at my most ill and certainly seemed to bring on PEM the next day. I still recall how terrible I felt just standing up during the ceremony to be my brother's best man at his wedding - and hoping that I wouldn't black out. I never have blacked out from prolonged standing, but I certainly have felt on the very edge of doing so.

 

[Peter T]

but I'm a little surprised that among the physical activities listed that can lead to PEM there is no mention (on the chart at least) of simply "standing."

l wonder if this is because people are only now recognising the significance of orthostatic intolerance.

 

[Chris]

I’m often left with the impression that many ME researchers (and doctors) keep missing the essence of PEM even when studying it head on. It’s often as though they see it as an amplification of a preexisting set of symptoms, rather than a sui generis pathological process that kicks in. I have tried countless times to explain that, when I crash, I feel a qualitative change in my state - I suddenly feel "sick" indeed - as opposed to a mere quantitative change - I was exhausted earlier and now I am just "more" exhausted. No that is not it at all. I’ve only read the abstract but this excerpt from the background of the paper suggests this misconception: "Post–exertional malaise is a worsening of these symptoms".

And this leads to a conclusion that again gives me the impression of missing the essence: "Given the extensive variability in patients, further research identifying subtypes of post–exertional malaise could lead to better targeted therapeutic options".
Subtyping may have value but you can also do that endlessly. What needs to be targeted therapeutically (in my humble view of course) is not the various aspects of PEM so to speak artificially analyzed apart, but the very existence of PEM, the x factor that triggers its onset.

It’s a case of the proverbial trees (the list of various symptoms across patients) hiding the forest (the fact of crashing to begin with). This should be the target. All the more urgently and resolutely since crashing all the time does not just "interfere" with the "ability to lead a normal life". It destroys it.

 

[JemPD]

I'll try - I may have to come back and try again, so tell me if I'm not making sense.

It's where I am alert and let's say someone asks me a complex question. If I go out to the chemist to collect your prescription tomorrow would you like me to buy you some apples at the greengrocer's?

It's not that difficult. However when processing ability fades if one or other of the clauses(?) in the question is an issue my brain can't handle it.

If my prescription won't be ready until the day after tomorrow & not tomorrow then I need to correct that and then agree I would like some apples.

Or I want my prescription collected tomorrow but would prefer bananas.

My brain can remember the information but can't process one part being correct and one part incorrect.

Another example would be giving simple directions - I know my neighbour Joe lives on the right hand side of my road as I walk down it. As I bet to the bottom of my road and meet someone who asks where Joe lives and turn to explain my brain cannot process that now I'm facing up the road Joe's house is now on the left side. I could lead someone to Joe's house but my brain temporarily cannot work out how to switch sides as I change direction.

So I might understand a question, I might remember the question & the information needed to answer it but still be unable to answer if I have to mentally manipulate the information in any way.

This usually sneaks up on me before concentration & memory become a problem. At first I might be able to figure the answer out but it will take me a lot longer and take a huge effort.

A very good description and one which i dont think anyone can fully comprehend until they experience it.

 

[Snow Leopard]

l wonder if this is because people are only now recognising the significance of orthostatic intolerance.

Speaking of which, I'm curious if anyone only (or predominantly) experiences orthostatic intolerance as a PEM symptom, rather than all the time?

 

[Peter T]

Speaking of which, I'm curious if anyone only (or predominantly) experiences orthostatic intolerance as a PEM symptom, rather than all the time?

My orthostatic intolerance worsens with PEM.

 

[Trish]

Speaking of which, I'm curious if anyone only (or predominantly) experiences orthostatic intolerance as a PEM symptom, rather than all the time?

Mine changes. Much more likely to pass out when vertical during PEM than at other times.