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

Snow Leopard said:
Speaking of which, I'm curious if anyone only (or predominantly) experiences orthostatic intolerance as a PEM symptom, rather than all the time?
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I have POTS as well as severe ME and my orthostatic symptoms are much worse in PEM, although I think the muscle weakness issues exacerbates it. When I'm struggling with PEM I feel ill, weak, can't be upright including sitting propped up in bed for literally more than a few minutes before I start to get clammy and sweaty (both warning signs that I’m overdoing it) and feel like I just have to lie down RIGHT NOW. This, to me, is classic orthostatic symptoms. I have no strength or stamina in my muscles, I get a sore throat (usually this is the first symptom that crops up a day or two before and how I know I’m going to get hit), sticky, thick saliva, dry yet crusty eyes, pain all over, but worse in my hands and forearms (this is always a sign of a bad day coming if I wake up with aching hands and forearms) and just no muscle energy at all. My coordination is shot to hell, along with my balance, and I can’t even turn myself in bed on days like this. But these are all ME symptoms.
Getting to the loo is the biggest challenge and that’s about 10 steps from my bed. But I’m used to most of that, the orthostatic stuff is what tends to make me feel worst because I just have to lie down and can’t sit up at all. It eases off as soon as I do, although everything else is still there. Somehow it’s just easier to bear if I’m flat on my back.

edited for clarity
 
I am right to assume that PEM is just as severe whether you are mild, moderate or severe?

I don't describe myself as severe, but when I'm in PEM, I want to be put out for 3 days so that I don't have to live through it. It is beyond distressful and quite scary at times.
 
Well, this is not aging well. I only skimmed and wanted to find it to be adequate, but it falls short on too many points.

To have a chance of making any progress, the field needs at least one paper of this scale per week. Minimum. To begin with. This is the result of 3 years of work. Maybe there is more on the way. Probably not.

It's not completely wrong, which is kind of improvement. But it falls very short for being the only output so far of a 3-year research program that was promised as a sincere effort, meant to show they mean business. Business has, in fact, not been shown. More important, it tells us nothing new and will not change anything for anyone.

One of the most annoying tropes I see from deniers is the assertion that this disease has been studied for decades. This here is frankly about a Master's thesis level and it ranks as one of the better studies from official sources. It's barely 1% effort. 90% of that 1% is wasted on either total crap like BPS or largely useless stuff like this.

I really want to see the post-Covid people start to get screaming mad about this. Medicine should have been prepared for them, there is no credible excuse here. This nonsense has made our entire civilization weaker, which is no easy feat. Failures of this magnitude generally flow through angry short people with weird mustaches in front of very large crowds, not through scientists working in the most ideal conditions.

One thing that can be taken from this is the fact that self-regulation is not possible, humans are incompatible with it. Even in the most perfectly conducive circumstances, as this here is, self-regulation completely fails, every human system is subject to corruption, magical thinking, self-preservation and hubris, even ones built explicitly to be about saving lives, working in the most perfectly ideal conditions, with everything at their disposal to do better.
 
The only thing I like about this bland inaccurate report is that all three categories (physical, cognitive, emotional) list doctors appointments as causes of:

whatever-it-is-that-they-think-they-are-measuring-which-is-not-PEM.


Is a letter to the researchers warranted?
 
Trish said:
I'd really like to hear what others think about my concern about this study.
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I think you are a little too hard on the authors of this particular study when you look at what they had to work with (the fact that after all these decades there still is so little to work with is an indictment on the field in general, not on this particular team, and a different story for another time).

There's very little descriptive research on the nature of PEM apart from Jason's work. Some of Jason's work is based on PEM descriptions by pwME - though IMO there are significant gaps in the data.

It looks to me as though the authors of the present study used Jason's work as a base for creating their list of questions and prompts, in good faith and unaware of the limitations. I can't recall now if they asked for patient feedback on their questions & prompts list before using it but if they did I wouldn't be at all surprised if many patients would have approved it. All those points on the list are things pwME talk about a lot, out there in the wild on the Internet, and that includes the notion that emotions cause PEM.

So I think the authors made a valiant effort of trying to capture patient experience as broadly as possible but were (partly) misled by the way pwME talk about PEM. The use of a focus group moderator without knowledge of ME was no doubt intended to avoid moderator bias influencing the direction of the discussion. That's fair enough but it would have been good if the questions and prompts had allowed for some prodding for alternative interpretations, e.g. do you think all the symptoms you described are due to PEM or could some of them be explained by fatiguability.

It's also a relevant question how similar CPET-PEM is compared to 'ordinary' PEM as we don't really know yet what aspect of PEM CPET is measuring. It could be something that only appears after much more vigorous exercise than pwME would normally engage in.

So overall what they were trying to do is good - though it should have been done decades ago - and unfortunately it didn't quite come off.

Where IMO they went wrong is with the method of telephone focus groups.

For starters that excluded everyone unable to cope with 2 hours on the phone.

More importantly, group dynamics come into play. For example there easily could have been a dynamic where no individual would want to challenge another's experience too much. Who'd want to insinuate that somebody else's PEM isn't "true" PEM?

Also, the authors noted group members were feeding off each other, as you'd expect. So you can easily imagine, for example, that when one participant gives an example of PEM after a strong emotion others may recollect their own examples of PEM following emotional events - without stopping to reflect if there hadn't been something else going on at the same time, like some associated physical effort, that could explain the PEM. Certainly many patients and researchers need to be better at remembering that correlation is not causation.

Finally, lack of time to really reflect without being socially influenced by other participants is a major shortcoming of real time discussions, especially when brain fog is at play. I think a written or recorded back and forth and crisscross communication would have resulted in better data.

Or they could just have asked S4ME members to discuss their intended protocol! We'd have straightened it out ;):D (actually, I'm only half joking, critical buggers like us may be a pain in the proverbial in the short term but I'm convinced we could ultimately help improve research).
 
Thanks very much, @Ravn. I have been reflecting more on what I said, and stand by it all, and I have also been thinking that group telephone calls are probably the worst possible way for pwME to give considered answers to questions, even if they had been asked the right questions, for all the reasons you give.

If PEM were a simple phenomenon, then machine analysis of words and phrases used in describing it might have given a clearer picture, but the fact that they tried to boil it down to 3 key symptoms in the abstract and conclusion, and in the process completely omitted the 'malaise' and loss of function aspects that can leave the sufferer lying in bed feeling ghastly for days or longer is, to me, unforgivable.
Maybe I need to write them a letter.
 
Chris said:
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.
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InitialConditions said:
Here's how I describe my experience.

I have a real-time fatiguability—this is, a small amount of physical or mental activity can make me feel much worse. On top of that, I have a underlying cycle of symptom severity that works on a longer time scale (usually with a period of a week or two). The latter may be a result of exertion, but it is not 100% correlated; it may be better correlated with cumulative exertion. The two interact so that during a bad period my real-time fatiguability is much more pronounced and my baseline is reduced. During better periods the real-time fatigueability is not as extreme and any baseline seems lifted.

I'm still unsure how this relates to the usual definitions of PEM. For me, much more work is needed to forumalate a concept that describes different experiences.
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These descriptions of ME seem very accurate to me. I have the fatiguability all the time; it only varies by how long it takes to cut in. If I have overdone things it will come on quickly and suddenly. Everything is normal then ... full stop. When my husband was recovering from flu, this happened to him. We went shopping but he did not tire slowly it came on very quickly. That may be an important clue to what goes wrong for us.

Then there is the adrenalin rush. I love it. I visit my grandchildren and play with them. The ME aches and pains cut in as well as the problems with vision movement and speech but I feel alive. As I go home I plan what I could do the rest of the week. It is as if I forget how ill I am.

Then a few days later it hits; I feel like a zombie with a brain that is clouded and unable to function. My sleep is bad and the pain becomes an all over cloud. I feel flu like, sick and old. My throat gets sore, my mouth dries up and my lymph glands swell. It actually feels as if all my membranes swell up.

Dysautonomia is a better term for what we get than OI because it covers temperature control and blood sugar control as well as problems standing and I believe it is a constant ME symptom. Like others I have always found walking to be easier than standing.

So from this discussion there seem to be ME symptoms which are present most of the time, which worsen and are joined by others when we go beyond a variable limit. These symptoms can get worse with PEM but there is a flu like feeling of, well, malaise then.

Lily Chu found that ME patients developed immune related symptoms after exercise which did not happen with healthy controls.

There may never be a soundbite description of this.
 
Snowdrop said:
Yes, it's like people with ME are drowning in the ocean and the people tasked with rescuing them are on the beach describing how long they think they can last out there.
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Quite.

Agree with @Trish 's comments; thanks for those, Trish. Others too - just too fried to mention them all.

My first reaction after reading a summary of the article (thanks to @Michiel Tack for that) was: "Talk about stating the bleedin' obvious which we've known for decades anyway". My second, third, fourth etc. reactions were much the same.

The patient selection process looks extremely - er, flawed? "Participants were recruited using purposeful sampling, a qualitative sampling procedure in which investigators intentionally recruit participants who have experienced the phenomenon being explored". So no room for error there, then.....

Thank you, NIH, for another shocking waste of resources.

Edited to add: the illness described in this article appears to be SEID (IOM 2015), not the ME I've lived with for nearly 40 years *long sigh*
 
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Trish said:
I'd really like to hear what others think about my concern about this study. To me it's looking more and more like it was set up to find the set of answers they wanted to find, not to explore PEM in depth.
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Very relieved to hear that a study involving Brian Walitt and small sample size who are "queried" on their retrospective memories ends up producing pretty much what I'd expect it would. Saves me having to re-evaluate my heuristics.
 
Thanks for sharing the news about our upcoming webinar, @Andy!

If anyone has questions they would like the NIH to answer about this paper, please send them along! We are working closely with our NIH presenters to address community questions during the presentation. Please email your questions to SolveCFS@SolveCFS.org - please make sure to note that your questions relate to the Dec 2nd webinar. We have two webinars in December and don't want to confuse them.

Join lead author Barbara Stussman and co-author Dr. Brian Walitt of the National Institutes of Health (NIH) in a conversation about these important findings in #PEM and their impact on the next chapter of #MECFS research.
Wednesday, December 2 at 10 am PT/1 pm ET
Register here: https://register.gotowebinar.com/regi.../3414424919033432076


PS. Dec 16th is the webinar on the You + M.E. Registry update - including LONG COVID portal!
Register for the Dec 16th webinar at: https://attendee.gotowebinar.com/register/411699344998749711
 
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