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

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.

 

Slow walking is easier for me than standing, sitting upright and talking. I have to find the right balance, but it's not that simple.

 

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.

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?

 

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" )

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?

 

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?

 

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.

 

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.

 

Yep. It takes a lot more self discipline to stop than it does to keep going.

 

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 Bring on the PEM.

 

This
Succinctly put
Thanks

 

Feels like an exercise in marketing.

 

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.

 

Surely this is OI that they are describing?
i.e " needing to lie down"