PEM-like descriptions and accounts in non-ME illnesses

I thought It would be interesting to have a place to collect descriptions or accounts of living with other illnesses that include phenomena seemingly nearly identical to what we call PEM.

For Mitochondrial disease, check out the thread: What differentiates ME/CFS from known primary mitochondrial diseases; could mitochondrial disease cause PEM?

For overtraining syndrome, check out the thread: Overtraining syndrome (OTS) as PEM for healthy people?

 

A while ago, @forestglip found a reddit thread related to Lupus, where one of the most liked answers contained a description from a Lupus patient that sound like PEM:

 

Jonathan's written in various threads about the experience of long Covid, saying he had to limit activity during an extended recovery period, but he still didn't think he got PEM.

It would be interesting to hear more about post-viral fatigue—or recovery from any illness or treatment—that limits how much people can do but doesn't seem to meet the criteria for ME/CFS. I've had ME since my teens, so I can't remember what slow-but-normal recovery processes are like.


ETA: I've experienced psoriatic arthritis, where active disease causes crushing fatigue, but there's nothing even faintly resembling PEM. You do too much, you're on all fours and it hurts like hell. But that's all.

 

I don't know if this is what you're looking for, but there is a case report of a fluroquinolone antibiotic inducing something that sounds like PEM:

 

I think this is where the distinction between exercise-intolerance and exercise-inability becomes useful. Most of mitochondrial "PEM" I've read are the result of the conflating the two when it really resembles rapid fatiguability rather than PEM. The hallmark of PEM is that you are fine (not sick, that is) after an exertion and then get hit by the proverbial bus 12-48 hours later. It was like a clockwork when I was moderately sick: I'd be sitting up one minute, and then I'd get knocked out the next when 2PM rolled in. The post-exertional fatigue in mitochondrial dysfunction may carry, or even worsen, in the following days, but it does not involve precise delay/delineation AFAIK.

One way to separate PEM from PEM look-alikes would be to subject the patients to 2-day CPET test. If the patient can't reach VO2 max at the first place, then it's an exercise-inability. The ensuing fatigue or weakness should not be called PEM then.

 

Channelopathies have PEM-like delays of symptom exacerbation, typically 12 to 24 hours after exertion. What I find particularly interesting is their version of PEM comes after resting following exertion. Mornings are frequently bad for such people precisely because rest is involved.

 

Its been interesting to observe my normally very healthy husband as he recovers from Covid. He's been reporting "pooping out" in energy following trivial exertion. When it happens you can literally see his complexion go grey. It's been a little over a month now and that pooping out has gradually been happening later and after bigger exertion such that it is almost lasting him a whole day. His descriptions sound so like someone with ME. The only difference really is that the time lag is very short, whereas with my ME after decades its definitely 1 to 3 days after, but early on when I was younger the time lag was much more immediate and same day.

He's also complained of brainfog though that seems to have gone now. He's just yesterday started taking turmeric in the hope of an anti inflammatory effect to accelerate his recovery. Night before last he reported a sore throat and swollen lymph glands "as if it (Covid) was attacking my body again". I had that as a ME symptom in the early years two but not in the last decade. Although Covid attacked my throat heavily unlike my husband when otherwise our symptoms were near identical, but mine worse in severity and longer lasting. His cough has persistent though where mine is not.

Its almost like in ME something traps us in this early convalescent phase and then our body starts adapting to cope as best it can.

 

See interesting case of a rare genetic disorder:

TANGO2: A Rare but Important Mutation 2024 Walters et al

 

Can you say more about this? Where did you get this info from? I am specifically interested in the 'after resting' bit.

 

I meant to reply to your post earlier but couldn't find it until now.

I also had to limit activity for at least 7 months post-Covid infection. I wouldn't describe it as long Covid but the experience was similar to my post-viral infection that developed into ME years later. I say years later because I was not experiencing delayed PEM physically or cognitively during those years. I did get delayed post-exercise muscle exhaustion and aching after doing a 40 minute stair master work out that lasted 6 months. I eventually recovered from that. It was most likely my first PEMish experience before it developed into the delayed PEM that I've been experiencing for the last 27 years and continually got worse with more exericse.

 

I wonder if I'm affected by one of these, as some of my muscles go limp if I rest after activity. It only affects my arms and legs, everything else is fine.

If it is, it can happen soon after exertion. About 18 months ago I did an unusually long swim, flopped on the sofa to eat lunch afterwards, then reclined with my feet up. Then the doorbell rang, but when I tried to get up I couldn't, my legs wouldn't support me to stand up. I'd only been home and resting for about an hour.

As I've got older, the floppiness that develops has got less severe. I haven't woken up with completely non-functioning limbs for a long time, but even though it wasn't a frequent occurrence, it was non-negotiable enough that I always set my alarm for an hour before I needed to be out of bed. The last occasion I can put a firm date on happened the morning Tony Blair won the UK election.

It never lasted long. My legs would start coming back online after maybe half an hour, and by gradually moving around more while I was still lying down I could speed the process up. Needless to say, no one ever believed me except those who'd seen it.

Anyway, although it leaves behind a lot of discomfort, it's not really like PEM. In addition to only some muscles being affected, there are no swollen glands or feeling generally ill, and the fatigue is only the sensation of heaviness. PEM fatigue has all sort of layers to it.

 

My wife was born with Andersen-Tawil Syndrome, a potassium channelopathy. She has classic ATS1, and as such one muscle noticeably affected is her heart muscle. This can manifest in atypical Long QT, or cardiomyopathy or even heart failure. The thing is this: It's not immediately following exertion that she is at greatest risk for a cardiac incident. It's after resting following exertion.

I had to convey that, with difficulty, to her bevy of cardiac surgeons following one serious episode. She was recovering after being released from hospital. Doctors wanted her to start slowly exercising to build strength. I was concerned. They tried to allay my fears by saying she could exercise in the hospital's facility as an outpatient, that she would be hooked up to monitors the entire time she was exercising. If anything went amiss, they'd be on it immediately.

I had to explain that it was when she would be sent home after exercising, when she would be completely at rest, most likely after she went to sleep, that her muscles might struggle, and one in particular, might fail.

I could tell they looked at me as an impediment to my wife making any meaningful progress.

Of course, this involved a life and death scenario. But her issues following rest after exertion can be much more pedestrian, and usually are limited to muscle weakness in lower extremities, vagueness and lack of clarity in cognition - things like that.

 

Thank you for sharing this. This highlights the need for people to be more aware of the limitations of exercise with specific conditions despite it being viewed as a universal panacea, both by health professionals and by much of the general public.

 

This is one of the most important threads potentially. Thank you @Yann04

 

Post exertional malaise in patients of Cancer-related Fatigue ?

https://pubmed.ncbi.nlm.nih.gov/32105793/

 

A good number of sarcoidosis patients report life limiting fatigue and considerable exacerbation consistent with PEME descriptions incl. reversion to baseline. This is true of those with pulmonary variants in whom tests such a pulmonary FTs are within normal limits, but who have numerous abiding symptoms such as fatigue. Chronic Lyme patients report similar (and if you have late stage Lyme, it is merely a linguisitic nicety as to whether you call it chronic, though you may have been misdiagnosed with no Lyme ever or Post Lyme). If PEM is a feature of post viral conditions, I do not know why a post bacterial condition should, in theory, not produce similar PEM.
2 day CPET in one sarcoid cohort was normal. The trouble with sarcoid is that one patient may be quite different from another and post granuloma illness is generally left to the birds apart from monitoring and the opinion that it is CFS or a from of FND. One investigation found ongoing post granuloma shift to TH1 dominance and ongoing low cortisol alongside BPS issues.
Much emphasis is now put on the delayed nature of PEM. This may be a common feature, but the delay observed on 2 day CPET is no more than 24 hours, so PEM within a day should not be disregarded (unless we are to throw out 2 day CPET) Whether PEM after 4 days is the same as "2DCPET" PEM is a question.

 

I can tick off all the various ME criteria over 30+ years though some have come and gone. Differentials are possibilities - in my case sarcoidosis and/or Lyme with further lab proof of a number of infections, some common others less so. Differentials are not of course necessarily exclusions since you can have more than one condition, ( though they may disqualify from research studies).
Here is my PEM experience, all when inhibiting general fatigue already established,
1) 700m walk, game of football, 700m back, up 3 flights of stairs , down, sit and wait for shower, shower, and then dragging myself upstairs as if at the end of a long run (but no recollection of breathlessness). 1985/6
2) Bike ride more or less on flat (Cowley, East Oxford to city centre) , walk around, ride back - whacked for 3-4 days ca 1990
3) Worsened formication, fasciculation and myoclonus after exertion ca 1988 onwards
4) Stiffness for 3 days after football 1988 (prior only 1 day)
5) Hot bath immediate exhaustion 1989-90 (switched to showers)

Given sarcoid comes and goes and affects different sites, a fair guess might be low level remitting sarcoid but it would be interesting to know if what I have mentioned fits anyone else.

(I now show diaphragm weakness which may be a glycogen related metabolic myopathy, sarcoid myopathy or due to phrenic nerve dysfunction poss. of Lyme).

Fatigue is ongoing , inhibiting. Self managed GET produced the 1 day on 3 days off pattern on average over time (10 years).

 

DePaul Symptom Questionnaire-PEM

Open ended responses

 

In the Beentjes preprint it was said that "primary biliary cholangitis is accompanied by. . . post-exertional malaise [51]". Reference 51 was to Jopson et al. "Understanding and Treating Fatigue in Primary Biliary Cirrhosis and Primary Sclerosing Cholangitis" (Clin Liver Dis 20 2016:131-142).

I was rather sceptical at the time that this represented PEM (the Jopson paper does not use the specific term and the descriptions of the fatigue in PBC did not quite strike me as having the character of PEM). However, I recently came across another paper (Front Immunol. 9:229) that made the same claim. Anyone aware of any hard evidence either way?