PEM-like descriptions and accounts in non-ME illnesses

I’m asking about this because some people argue that ME/CFS isn’t a distinctive condition, since PEM is allegedly present in other diseases.

Here’s a quote from a Reddit account with diagnosed multiple sclerosis:

"I knew my fatigue and knew my limits. But recently it seems like even light physical activity (which i totally tolerated before) causes me to crash with total exhaustion, muscle pain, tingling sensations and unrest. Basically its unimaginable of functionning as a normal human being even though I have no obvious neurological deficit. Crashes occur within a few hours delay, peak after a few hours and subside within a day. Basically light jogging for 10 minutes ruines my entire next day. What are the chances of this being attributable to ms (a relapse maybe) or is this something else (pseudo-exacerbation)? Bloodwork turns up normal and I got no other symptoms of infection or something else. It rather matches descriptions of post excertional malaise in chronic fatigue syndrome. Absolutely not looking forward to another medical challenge right now..."



However, I’ve also seen many people with MS on Reddit say they can exercise successfully. That makes me think that the post-exertional worsening some patients describe isn’t the same as in ME/CFS and probably relates instead to so-called pseudo-exacerbations and Uhthoff’s phenomenon.

Sjogren’s is less clear to me. I haven’t found a good description of post-exertional worsening on the Sjogren’s subreddit. Some people with Sjogren’s claim to have PEM, and some of them developed PEM after COVID.
 
Formerhuman said:
I’m asking about this because some people argue that ME/CFS isn’t a distinctive condition, since PEM is allegedly present in other diseases.
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I don't think we get anywhere arguing at this sort of level. Elbow pain is present in about fifty diseases which are all distinct. Both robins and chaffinches have reddish fronts but they are distinct. Reddit seems to be a sump for medical confusion on this sort of issue. ME/CFS does not produce blindness or upgoing plantar reflexes so it is distinct from MS. Things are complicated in medicine.
 
Obviously anecdotes are not easily interpreted, but this Reddit quote of a ‘crash’ in MS sounds like very dramatic increased fatiguability rather than ME/CFS type PEM as I understand it. When I experience a rapid crash like this I do not interpret it as PEM if it resolves over just a few hours. Obviously in such a situation there is a high chance of PEM being triggered, but hopefully resting promptly enough for me sees me avoiding full blown PEM.

I obviously can not with any certainty say that such a crash is not related to what I describe as PEM, but I would want to see some of the counter intuitive aspects, such as general malaise, swollen glands, delayed onset, a course of symptom worsening not simply correlated with rest, cross modality effects, new or dormant symptoms re-emerging etc, before I was confident in saying what is being described is ME/CFS type PEM. Though obviously unless we identify an underlying organic process we can not say these different experiences involve the same phenomenon or not.
 
Peter T said:
I obviously can not with any certainty say that such a crash is not related to what I describe as PEM, but I would want to see some of the counter intuitive aspects, such as general malaise, swollen glands, delayed onset, a course of symptom worsening not simply correlated with rest, cross modality effects, new or dormant symptoms re-emerging etc, before I was confident in saying what is being described is ME/CFS type PEM. Though obviously unless we identify an underlying organic process we can not say these different experiences involve the same phenomenon or not.
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Also lasting longer than a day
 
Delayed PEM lasting longer than a day has always been my experience. It has lasted longer than the 3-4 day 'normal' for me years ago when I went waaay beyond my typical energy expenditure. I'm pretty aware now about my energy limit boundaries after years of experimenting.
 
I have seen descriptions of very PEM-like symptoms on the lupus subreddit, including things like a 24-hour delay and a sore throat that you wouldn’t necessarily expect to see in other types of exercise intolerance. Based on my last appointment, my rheumatologist seems to have never encountered that in lupus, so it may be pretty rare if it’s even a real phenomenon at all.

I get the impression that some people are playing fast and loose with the meaning of PEM these days. I would take anyone’s claim to experience it with a grain of salt unless they actually describe it. That MS account doesn’t sound like PEM to me.
 
When I got Covid a few years ago I would have said I had delayed PEM too if I didn't know what ME/CFS delayed PEM was. I thought I was over the Covid infection after 3.5 weeks, but after I went for my usual power walk I got up the next morning and couldn't stand on my legs for another 3 1/2 weeks, and it took another 5-6 months to return to my normal baseline.
 
I didn't even have delayed PEM or PEM like symptoms 30+ years ago during PVFS/CFS onset until years later. It was a completely different experience from my Covid infection recovery.

My infectious ME onset was sudden, but the symptoms developed gradually over the years until I returned to work 9 months later and went downhill from there and became disabled.
 
Formerhuman said:
I’m asking about this because some people argue that ME/CFS isn’t a distinctive condition, since PEM is allegedly present in other diseases.
Click to expand...
If PEM is indeed present in other conditions, I'd consider ME/CFS being a comorbidity to those conditions rather than ME/CFS not being distinct. When PEM is present in fibromyalgia, for example, they usually get ME/CFS diagnosis as a comorbidity. As for MS, I wouldn't be too surprised if there are higher prevalence of ME/CFS among MS patients than general population.

Formerhuman said:
Crashes occur within a few hours delay, peak after a few hours and subside within a day.
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This sounds more like a rapid fatiguability to me. It also happens to me after a light jogging: after about 2 hours, I crash for a few hours and then recover. The real PEM comes the next day.
 
I feel like PEM needs to be better described. "Symptom exacerbation that lasts for one or several days, often with a delay after initial exertion", is not detailed at all, a BUNCH of people with chronic illness experience that.

Its when someone described a clear, sudden onset (especially after infection), and has experienced PEM like symptoms (so a big combination of symptoms, e.g. not only chronic pain worsening) after exertion with clear delay that has lasted for at least 5 days, in relation to how much exertion, when I start thinking that it sounds similar to my experiences.
Obviously PEM can have different forms, but I think most people at least sometimes experience PEM that lasts for more then a "few" days.

I do think some people that are currently diagnosed with some other conditions might have me/cfs as well, as opposed to PEM being part of that specific condition. Especially if they have gastroparesis, hEDS, dysautonomia/POTS, fibromyalgia etc., but that doesn't mean those conditions don't exist or anything.. just that you can in fact have several.
 
Was curious about experiences of people with narcolepsy during actual infections given some of the discussion in this thread:
jnmaciuch

Thread 'Peripheral neurons, CRH, and sickness behavior'

Rather than do a separate thread for each paper, I figured I would make one thread pulling together a couple findings and see if there's any potential relevance to ME/CFS.

CRH is of interest from the ME/CFS autopsy study preliminary results, discussed here:
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Ended up finding this reddit thread where a lot of people diagnosed with narcolepsy talk about symptoms that sound very close to PEM:


Obviously taking everything with a grain of salt (especially the explanations offered in the thread). The subforum probably has a mix of type I and type II narcolepsy cases, which also complicates things and may mean several of these people are misdiagnosed. But if even some of the cases are real, the overlap with ME/CFS seems interesting.
 
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Curious. As I understand it the nosology only changed because of the hypocretin/orexin work in the late 90s/early 2000s which led to an understanding of cataplectic narcolepsy as a biochemically, as well as clinically, distinct entity. But it appears from a quick skim of the literature (e.g. Heier et al; Kanbayashi et al; Mignot et al) that while type I is biochemically distinct it is difficult to distinguish out type II narcolepsy from idiopathic hypersomnia. According to this review article the diagnostic criteria for type II are:
Narcolepsy type 2 maintains the same MSLT requirements of a mean latency, 8 min and two SOREMPs (or one SOREMP on PSG and one or more on MSLT). Cataplexy must be absent and cerebrospinal fluid hypocretin-1 levels, if measured, must not meet the narcolepsy type 1 criterion.
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but it's not clear to me that latency etc criteria alone would make it a discrete entity. I wonder if some of these NT2 cases are undiagnosed pwME.
 
Nightsong said:
but it's not clear to me that latency etc criteria alone would make it a discrete entity. I wonder if some of these NT2 cases are undiagnosed pwME.
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yeah I’m wondering the same thing. Though I noticed one or two people on those threads had a little sticker (label? I don’t know the Reddit terminology that well) next to their username mentioning cataplexy which would make them NT1
 
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