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 didn't have OI in the earlier years so I know the PEM differences with and without OI.

My PEM became much more distressful when I developed autonomic issues. I experience OI all the time, and I've avoided PEM for almost 4 years.
 
If I have to queue up or spend a long time socialising sitting up at a table without any breaks it is going to make me feel worse at the time but also I am definitely getting PEM the following day. I don’t know if I’m interpreting this right but it feels like standing in one spot drains my energy very quickly, sitting drains energy but much less noticeably. On the sofa feet up doesn’t drain energy so I can do stuff like phone calls or being on line much longer. I can’t say OI definitely causes PEM but it feels like it does.
 
Forbin said:
Prolonged standing was a major issue
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Walking is definitely easier than standing for me. As long as I can walk at the pace that's right for me, I can walk for longer than I can stand and I'm far less likely to feel like I'm going to collapse.

Snow Leopard said:
I'm curious if anyone only (or predominantly) experiences orthostatic intolerance as a PEM symptom, rather than all the time?
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My OI is probably milder than a lot of other people's but it is always worse with PEM.
 
I think this paper is a good start.
To be honest, I have lived with this for years and even I have a hard time making sense of my symptoms and the ins and out of PEM. The symptoms are not always the same, it's not always the same severity and it's not always the same timeline. it all depends on the severity of the exertion and the cumulation of exertion over different days.
What do you call PEM? Do you guys call every worsening PEM? Or only when you totally crash and can't do anything for days?
 
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 orthostatic intolerance all the time but it is worse during PEM.

It's also worse right after any exertion. If I've been resting with my feet up for a couple hours then I can stand for a bit longer time before I get that "you need to sit down right now" feeling.

But if I've just walked a few blocks, and then I stop and stand still, that need to sit down comes on very quickly, just like during PEM.

This is why I always carry a folding cane/seat when I go anywhere.

(not that I ever go anywhere NOW, during this pandemic, I mean in the "before times" :rolleyes:)

Edited to add: As others have said, a short amount of walking is always easier for me than standing still. I can go from room to room in the house fairly quickly but then I need find a place to sit.
 
Press release from NIH about the study
NIH study details self-reported experiences with post exertional malaise in ME/CFS

“It was quite striking to hear the extent to which PEM can affect their quality of life,” said Barbara Stussman, statistician at the NIH’s National Center for Complementary and Integrative Health and lead author of the study. “The widespread body symptoms, the unpredictability of PEM, and the sometimes-lengthy recovery greatly hindered individuals’ ability to live a ‘normal’ life.”

The study also identified, for the first time, differences between PEM caused by daily activities, such as grocery shopping or going to a doctor’s appointment, and PEM caused by the lab test CPET. The results suggest that the overall symptoms were similar, but PEM caused by the exercise test came on faster and lasted longer.

Additional research is required to learn more about the causes of PEM in people with ME/CFS. Future studies may identify sub-types of PEM, which may help guide targeted treatments.
 
Interestingly, 11 focus group participants described experiencing an adrenaline rush while doing an activity before the PEM symptoms came on, both in daily activities and during the CPET. These participants described experiencing “adrenaline,” “endorphins,” and “euphoria.” One participant described this feeling after CPET as:

“I get that high of feeling like, wow, I can do anything…”


Another explained:

“Emotionally right after my test I felt elated.”

Another said,

“I had a surge of endorphins and adrenaline during the test.”​

Whitney Dafoe speaks of having adrenaline rushes then crashing.

Adrenaline encourages me to overdo. I have a problem stopping because my brain is on an endorphin high. My energy peters out and PEM fills the void. Pacing is a great help for me. I use the alarm on my phone to remind me to stop. I want to keep going. I have kept going in the past and it caused my PEM to arrive immediately. I can judge how badly I overdone by how soon the PEM arrives. I wish one of the participants had explained that to the Authors of this study.

I get the idea all they done was confirm patients complain of PEM (using questionnaires) after physical or mental exertion.

Do you think the authors found PEM to be a psychosomatic physical symptom relating to a mental disorder or a physical symptom from an underlining physical disease?
 
I have just read carefully through the whole paper and am pretty appalled at the overall approach, analysis and conclusions. I come away from it thinking they have seriously misunderstood PEM.

I don't have the energy at the moment to go back through in detail and discuss everything that bothers me, but from memory here are a few key points.

They contrast PEM after CPET with 'PEM in everyday life' and describe them as different. But the descriptions of what they refer to as 'PEM in everyday life' seem to include what I would call the effects of fatiguability during and after all activity, not PEM. Examples they give included things like needing to lie down for an hour or 2 after a trip to the shop because of increased muscle fatigue and pain, or not being able to continue a conversation because of increasing difficulty concentrating, and needing to lie down for a while to rest the brain. I have not understood those to be classed as PEM.

To me PEM is the, usually delayed, collapse into a nearly non functioning and feeling very ill state after exceeding my energy envelope the day or cumulative days before.

They seem to make no distinction between fatiguability after any activity and PEM crashes. A lot of what they are calling symptoms of PEM are, to me, everyday symptoms of ME.

And they insist they have made a new finding that emotions can cause PEM, but they set the study up to find this by including physical, cognitive and emotional triggers in their leading questions, so of course the participants tried to oblige them by coming up with examples. Yet the examples cited were social events that include physical, social, and cognitive as well as emotional components, making it impossible to separate out effects. And most of the stuff described about emotions were consequences of ME and PEM, not PEM triggers.

As an artefact of their analysis, and of their confusing PEM with the effects of fatiguability during and after all activity, they isolate 3 core ME symptoms as core PEM symptoms - muscle symptoms, cognitive symptoms and exhaustion. What this omits is malaise - feeling much more ill during PEM, not just much more fatigued, weak, sore and foggy. The symptoms like headache, nausea, sore throat, dizziness, fainting, OI, on top of increased muscle and cognitive symptoms barely get a mention.

By omitting this key factor of malaise, they are able to describe PEM in ME as the same or similar to the fatiguing effects of activity in other chronic conditions, which is not what I had understood about those conditions.

The conclusion about dividing people into subgroups according to different PEM symptoms seems to miss the point. It may be that there are subgroups and they may relate to which ME symptoms individuals find most troubling, but there was nothing in this research that led to this as a valid deduction.
 
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duncan said:
Why word it this way? Why not title it "NIH details patients' experiences with post exertional malaise in ME/CFS"?

Perhaps more to the point, why are they still tackling definitions at this stage of the game?

Shouldn't they be talking about whether ME/CFS is an immune dysfunction, or persistent infection, or channelopathy?
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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.

I'm so disgusted with the lack of urgency. It's immoral.
 
cfsandmore said:
Adrenaline encourages me to overdo. I have a problem stopping because my brain is on an endorphin high. My energy peters out and PEM fills the void. Pacing is a great help for me. I use the alarm on my phone to remind me to stop. I want to keep going. I have kept going in the past and it caused my PEM to arrive immediately. I can judge how badly I overdone by how soon the PEM arrives. I wish one of the participants had explained that to the Authors of this study.
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Once the adrenaline surge has occurred, it takes a long time to wear off, and judgement can be affected- we get lost in the moment. I have many timers and watches.
 
I don't wear watches during the winter when I go for my walks because the battery freezes and the clock stops working . . . until my legs start feeling weak and I notice that it's been 7:05 pm for the last 40 minutes :bawling: Bring on the PEM.
 
rvallee said:
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.
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This
Succinctly put
Thanks
 
Sorry to keep going on about this, but rereading it today has really made me cross.
Just taking the start of the abstract where they define PEM:
Background: Myalgic encephalomyelitis/chronic fatigue syndrome is characterized by persistent and disabling fatigue, exercise intolerance, cognitive difficulty, and musculoskeletal/joint pain. Post–exertional malaise is a worsening of these symptoms after a physical or mental exertion and is considered a central feature of the illness.
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No. That's not a complete definition of ME, and it's not a good enough definition of PEM. It's closer to a definition of fatiguability. If that's what they thought they were researching, and designed the questions to elicit, they have failed.

This part worries me too and indicates why there was a problem with the study design I think.
All focus groups were conducted by an experienced focus group moderator who had no prior experience with the study population or ME/CFS to ensure impartiality. The semistructured focus group script included broad questions aimed to explore patients' experiences of having PEM, both in their daily lives and in response to the CPET test. Discussion questions centered around activities that can trigger PEM, specific symptoms of PEM, how long after exertion symptoms began, how long the symptoms lasted, and at what point the symptoms were at their worst.
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If the facilitator knows nothing about ME, how can they possibly understand why the questions asked didn't enable patients to differentiate between ME symptoms and the day to day effects of fatiguability while pacing successfully and not crashing, and the completely different (to me) major crash and loss of ability to continue pacing normally for a day or usually much longer and feeling very ill that I understand to be PEM.

The questions and prompts used in the focus groups:
https://www.frontiersin.org/files/A...11-01025-HTML/image_m/fneur-11-01025-t001.jpg

fneur-11-01025-t001.jpg


Look at the first set of questions. They are not about PEM, they about how you feel after any exertion in daily life. And the prompts include physical, cognitive and emotional 'exertion' so they are feeding the idea of emotion in from the start.

No wonder they ended up thinking a crash after a CPET was different from what they thought was PEM in normal life.

Sorry, I'll stop going on about this now. It's making me angry. Oooh dear, that's an emotion, maybe it will trigger PEM... (sarcasm).

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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Trish said:
I'd really like to hear what others think about my concern about this study.
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Based on the questions you posted in #56 above (sorry not got the necessary to reread) they seem to think it's a predictable thing and people will be able to give precise answers. That is absolutely the opposite if what living with ME is like unless you're very severe and can do very little, in my opinion.

I agree they seem to be more about fatigueability than PEM. Also the answers to all those questions to me would start with "it depends" . ME is a fluctuating condition and what might not trigger PEM today might well tomorrow & the severity and duration depends on a whole range of factors.
 
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.
 
Trish said:
Examples they give included things like needing to lie down for an hour or 2 after a trip to the shop because of increased muscle fatigue and pain, or not being able to continue a conversation because of increasing difficulty concentrating, and needing to lie down for a while to rest the brain. I have not understood those to be classed as PEM.
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Surely this is OI that they are describing?
i.e " needing to lie down"
 
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