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

Word clouds are always interesting in giving topics their proper weight.

 

Skimming through and this is good. As an intro work. This is some of the basic work that should have been done decades ago. More of this is badly needed, although similar research has been done previously. It was not specifically on PEM, this 2010 report from the Quebec government features much of the same and was also quite good: https://www.inesss.qc.ca/fileadmin/doc/AETMIS/Rapports/Autres/2010_02_monograph_en.pdf.

It just feels very little output after years of this research program. It's pretty good, but the productivity level of ME research is currently not even 1% adequate to the needs. I still have to appreciate that this is good but it's so very little, tiny tiny breadcrumbs dispensed at glacial pace. A pace that has exactly zero chance of producing anything useful within the next decade. Despite being good. It's just not enough.

So I am... whelmed.

 

This honestly is an excellent account of the multiple facets of PEM, especially with regards to the diversity of its symptoms. That is, each of the overarching "big three" (exhaustion, cognitive difficulties, neuromuscular complaints) can be expressed through similar but slightly different symptoms, and also patients report less common/individual/unique symptoms.

That they were able to compare PEM from (cumulative) day-to-day activities vs. PEM from a single, high-exertion activity is so helpful in clarifying how more exertion directly results in a more intense flare of symptoms and in a (way) longer recovery to previous baseline, if at all.

The study has its limitations (qualitative and retrospective) but all MDs, and researchers working on ME, should read this to understand what PEM is about. Hopefully MDs could better assess the needs of their patients with ME, and researchers could see that studying the biological basis of PEM is a key aspect to figuring out ME.

I agree with @rvallee that this should have been done a long time ago. Kudos to the people at the NIH for putting this helpful resource out there -- but they have much, much more to provide, specifically good quality biomedical research.

EDIT: also, no use of the word 'fatigue', thankfully. This makes sense since this is a patient-focused study and patients report debilitating exhaustion, not general fatigue.

 

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.

 

I'm afraid I'm underwhelmed.

OK, I know perhaps it needs describing for everyone else to finally take note but really I just want somebody in research to take seriously the idea of finding out why we're ill and what we can do about it. Not all this peripheral stuff, however useful.

Just get on with the important (to the patient) stuff. Please.

 

I won't be able to read this today, but if it is what I hope it is, I will be pleased for the reasons @rvallee mentioned.

Furthermore, I believe it is the first study published by Nath and the inhouse study. Characterizing the defining feature of me/cfs from a well regarded institution and a prestigious researcher will be essential in redifining how the medical community addresses this illness. Most simply don't understand or even know about PEM.

 

The study is interesting, but I was a little disappointed that the authors did not explore the differences in "PEM" duration or symptoms following different challenges (cognitive vs physical activity), instead symptoms following CPET was compared with a non-specific/generalised "daily PEM".

 

Yes. This should have been done decades ago. But better late than never. Hopefully this will help dispel the myth that PEM is the same as post-exertional fatigue, and it may help improve future questionnaires assessing PEM.

Yes. I, too, had hoped that they might have looked more deeply into PEM following cognitive exertion and how it does or doesn't differ from physical activity-induced PEM. I'm also not convinced by their examples of emotional exertion, they're too intertwined with physical and cognitive effort. For example, the physical effort of attending a funeral together with the cognitive effort of making the required small talk would be enough to send many pwME into PEM, no emotion required. Not saying that emotion can't be a trigger, just that we need to look at more "purely" emotional events to find out.

Their comparison of PEM after either CPET or the sort of cumulative, semi-managed daily exertion is interesting though. It confirms my observation that when I overexert a little I get PEM with a delay and the whole episode is shorter and less severe but when I overexert a lot then PEM hits straight away and very hard and takes forever to go away, if it ever does.

A shame though they couldn't work out a way of doing their focus groups in a written format. Two hours on the phone would have excluded a lot of the more severe pwME.

 

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?

 

Did a rather long Twitter summary of this paper.

https://twitter.com/user/status/1307233209151827968


For easy reading I posted it on my WordPress blog: https://mecfsskeptic.wordpress.com/...-nihs-exploration-of-post-exertional-malaise/

 

None of this looks very specific to my understanding of PEM, unfortunately. I'm with Trish that 'exhuastion, difficulty thinking clearly and muscle pain/aches' are way too generic.

Also, you see 'flu-like symptoms' in smaller writing, but don't all three count as flu-like symptoms? I don't really agree with how they've broken them up.

It might be that more common phrases appeared more frequently because they're more common in English usage, not because they're more central to the disease.

Things like nausea, chills, feverishness, sore throat, etc, all seem like more specific ways to talk about flu-like symptoms, or at least more precise facets. Not every patient will list the same ones, but that doesn't mean they're not all describing something similar.

I would have wanted clarity on these three 'main' features. How does the exhaustion feel? What does it most remind you of? E.g., is it like being exhausted after exercise? Is it like being exhausted with the flu? Is it like being exhausted due to lack of sleep? Is it like being exhausted due to overwork?

There's so much more information you could glean from that. If it's not like overwork, that means we can better distinguish it from burnout. If it's not like chronic sleep deficiency, then we can better distinguish it from sleep disorders.

If it's like all of the above, then that gives us clues towards how an initial assessment can rule out 'normal' exhaustion. E.g., if it's like all those types of exhaustion combined, then those who only experience one or two types are less likely to have ME.

And how easy would it be to repeat this with more probing questions? They interviewed 43 people. You could do that over a month quite cheaply (ignoring the CPETs). Heck, I'd go as far as saying they could do it for free if their employers gave them a few hours a week to pull it off.

I have done similar things in the arts before on no budget, just with a lot of goodwill and volunteering. The hardest bit would be getting ethical approval.

 

There is a bit more info on this in section 3a Exhaustion. It reads:

 

That's a start, but as an anecdote like that, it's less useful than it could be without context (e.g., how prevalent was this description, comparatively?). I think there's so much more detail you could glean. We need to map the patterns. I'm always frustrated with these kinds of surveys because they always seem to lack depth, in my eues.

Maybe I'm just expecting too much.

 

I was concerned that they said that the fatigue required 'complete bedrest' to recover. This isn't always the case, and anyway, it's hard for someone with ME to get complete rest, even in bed.

 

The problem with the "flu-like exhaustion" description is that it assumes that everyone has the same experience of flu, which I would question whether that has been proven or is the case.

For me, when I'm in PEM, I have an absence of energy that is totally disproportionate to the level of exertion that preceded my crash. Not having had flu, to my knowledge, I don't know if that describes "flu-like exhaustion".

 

I would also be interested to know how long these patients were ill. The duration of illness is important imo.

Do all patients experience autonomic issues? That in itself could trigger differences in outcomes?

My experiences with symptoms from PEM has changed over the years. At the beginning I had sore throat/flu-like/malaise symptoms, but that all went away after I recovered from PVFS.

 

This is exactly the problem in my experience.

In addition, when at the doctors or being assessed I have found that people, sometimes with the best of intentions, put their words in your mouth.

For example, I always seemed to end up with memory & concentration problems written in my notes & letters. It was years before I happened to have the right level of function at the right time & explain to my doctor this was not what I was describing, though at times those things might happen too. I was experiencing problems processing, which is not the same thing.

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. Even if some patients can only contribute to saying "Yes! That's it!" .