Is PEM a feature of sarcoidosis?

[Hoopoe]

This description in a paper on sarcoidosis sounds like PEM (although not much detail is given so it's not clear).

Fatigue is often reported by sarcoidosis patients, especially during the onset and the active phase of this multi-systemic granulomatous disorder However, when sarcoidosis patients are tested for cardiovascular, pulmonary, and aerobic capacity by means of exercise tests, the results of these tests are usually within reference limits. Nonetheless, many patients state that they are completely exhausted after completing the exercise test. Also in daily life they experience severe malaise during 24 h or more following a single moderate exertion. These complaints may be so severe that they cannot fulfil their daily work the same and the next day(s).

In this study they also performed repeated CPET and found "no impairment of maximal exercise testing" on the second test.

https://www.sciencedirect.com/science/article/abs/pii/S0889159113001967

 

[Jonathan Edwards]

This description in a paper on sarcoidosis sounds like PEM (although not much detail is given so it's not clear).

Studies of this sort are likely to accrue all sorts of biases in the groups of patients studied, depending on what clinics they were drawn from and on and on...

I have never heard of this claim about malaise for 24hrs but it doesn't sound to me particularly suggestive of PEM. If you have an inflammatory disease and do more than you should you may well have 'malaise' for a day. To me PEM is not that. It is a delayed and prolonged payback beyond what you might expect if you had flu or Crohn's disease or whatever.

I have a sneaking suspicion that the authors of this paper are getting caught up in myths and memes typical of the 'fatigue industry'.

 

[richie]

Jonathan
Re. sarcoidosis: the key matter is that the fatigue is marked and often markedly beyond what one would normally expect for the degree of apparent disease. Problems with ongoing or repeated exertion parallel the experience of ME sufferers, as in some sufferers do many "oddities" such as myalgia, formication, fasciculation etc.
As with ME the disease to symptom relationship is unclear and debates abound as to the presence and role of ongoing antigens, immune dysfunction/s, and/or opportunist antigens acquired during the course of the illness etc.
The base line experience of low battery, quick discharge, slow charge with constant background fatigue is extremely common and reports read like ME sufferers'. I do not know whether this is also the case in the other immune illnesses which you mention but any moderately experienced sarcoid physician will testify to the degree of fatigue and its puzzling and frustrating nature as will vast numbers of sufferers. My impression is that it is more prevalent and more profound than in other immune related disease.
A notable feature is lasting fatigue after resolution of apparent sarcoid. This may also be underlying chronic causal antigens, chronic immune shift, opportunists e.g. histoplasmosis, low level sarcoid indiscernable on scan (or not scanned for etc.) At least some of this matches the issues around ME.
People become so used to the fatigue that it is hard for them to say if their payback is beyond what they usually expect because the fatigue is chronic and becomes expected but it is far beyond what they experienced when well and is far beyond what their doctors can account for and there is a definite exertion intolerance. It may be a "background fatigue to exertion to malaise fatigue + background fatigue" pattern giving a an experience of profound payback which is prolonged but blends very much with profound overall fatigue. This experience is shared with ME sufferers on my reading of patient accounts.
I am not aware that all reports of PEM involve delay though many do and I have not enquired sufficiently among sarkies as to delay in onset of malaise.

As to 2 day CPET, this suggests a difference between active sarcoid and ME but there is as far as I know no data on post sarcoid marked by fatigue. It would be interesting to test such patients. If post sarcoid is an ME type phenomenon perhaps such patients should be of interest to he ME community which has readily embraced post /long covid.

Regardless of any memes and myths of the "fatigue industry" both ME and many sarcoid sufferers experience life changing and puzzling fatigue. Elucidation of (post) sarcoidosis fatigue would be most welcome to many sarcoid patients and if that were to arise from those within ME circles it would be a happy circumstance for many (whilst the need for proper differential diagnosis must be respected).

My interest - mother acute sarcoid 1960's fatigue and myalgia since.
Myself "ME" since 1985, diagnosed with diagnosis of sarcoidosis in 2023 and no one can say nor will they ever be able to say whether it was sarcoid all along nor whether an antigen such as borrelia or toxoplasmosis or several other candidates have played a role.

 

[Jonathan Edwards]

I do not doubt that people with sarcoid have persistent fatigue. The issue is PEM, which I have come to understand as something quite different from the persistent fatigue I saw on a daily basis in people with RA, Lupus, Ank Spond or indeed sarcoid. People with RA do not 'crash' in the way PWME do as far as I know. The article talks of being unable to do things for two days. As I understand it for PWME the situation is much more like Snakes and Ladders so that you suddenly find yourself back on the bottom line for weeks.

 

[richie]

I think sarkies do crash but whether the crash is the same as PEM I do not know. Then again I think ME as diagnosed is an umbrella and also with fluctuation, plateauing and in some cases resolution I do not think it likely that there is one paradigm of PEM for all sufferers at all times.
I am going to ask around a bit. I do think that the differentiation of a specific ME PEM from persistent fatigue with marked worsening after activity will be difficult unless the 2 day CPET or such is used as the touchstone, but that is problematic as e.g. it may change during the course of ME and if made a mandatory descriptor would exclude even people who were in recovery but had had a previously aberrant 2nd day result.

 

[Kitty]

As I understand it for PWME the situation is much more like Snakes and Ladders so that you suddenly find yourself back on the bottom line for weeks.

Yes. And it's not just fatigue, a lot of us feel ill. Sore throat, swollen glands, headache, nausea, hot/cold/hot/cold. Light's brighter, sound's louder, whole body's uncomfortable.

I'm sure it varies, but for me fatigue's not even the most troublesome feature. It's the combination of immune-type symptoms with extra-rapid fatiguability, where normally doable tasks leave me shaky, dizzy and sweaty. It's like trying to do things too soon when recovering from 'flu; they seem feasible while you're resting, then you attempt them and...nope.

 

[richie]

The length of relapse may vary within ME, so if sarcoid exertion response is too short for PEM so is less lengthy ME!

The specific type of worsening may well simply reflect the fact that ME is a specific type (maybe over a spectrum) of disease and sarcoidosis another disease with a pattern of worsening in each form of malaise equivalent to the disease in question. s. What unites ME and sarcoid in my experience is a disproportionate response to all manner of exertion and stressors and I do not know whether this is common in other illnesses to such a degree and so frequently.

Your final paragraph would find resonance among many sarcoid sufferers with the caveat thatthe immune symptoms will be different as the diseases are different, but the rapid fatiguability and other non specific symptoms are not unfamiliar to sarcoid sufferers post exertion. Your final sentence is 100% familiar to sarcoid sufferers.

Thanks for your comment.

 

[richie]

I do not doubt that people with sarcoid have persistent fatigue. The issue is PEM, which I have come to understand as something quite different from the persistent fatigue I saw on a daily basis in people with RA, Lupus, Ank Spond or indeed sarcoid. People with RA do not 'crash' in the way PWME do as far as I know. The article talks of being unable to do things for two days. As I understand it for PWME the situation is much more like Snakes and Ladders so that you suddenly find yourself back on the bottom line for weeks.

Sorry Jonathan I missed your last sentence. That would be at the severe end but may be most common. I don't know the mild/moderate/severe proportions in ME. People with an ME diagnosis do report varying durations of PEM.

I certainly know of people with sarcoid who experience days of fatigue from one day of exertion (which may be utterly trivial in health). Profundity and disproportionality in length and intensity of activity response are present in sarcoid, not just persistence of fatigue, and to varying degrees as in ME. It may not be ME PEM and certain definitions of either may fairly achieve a clear distinction, though narrow definitions ME PEM may exclude many with an established ME diagnosis. It's dodgy ground just as using 2nd day CPET as a necessary biomarker would be.

Such narrow definitions may be actually desirable for cohorting and differentials tween PEM of ME and the sarcoid phenomenon due attention and credit must be given to the sarcoid phenomenon which is in many ways similarly described to PEM.

Sarkies like ME folk have to put up with a lot of misunderstanding and some dismissal and are rightly keen that their post exertional fatigue be well appreciated.

 

[richie]

This description in a paper on sarcoidosis sounds like PEM (although not much detail is given so it's not clear).



In this study they also performed repeated CPET and found "no impairment of maximal exercise testing" on the second test.

https://www.sciencedirect.com/science/article/abs/pii/S0889159113001967

Yes. And it's not just fatigue, a lot of us feel ill. Sore throat, swollen glands, headache, nausea, hot/cold/hot/cold. Light's brighter, sound's louder, whole body's uncomfortable.

I'm sure it varies, but for me fatigue's not even the most troublesome feature. It's the combination of immune-type symptoms with extra-rapid fatiguability, where normally doable tasks leave me shaky, dizzy and sweaty. It's like trying to do things too soon when recovering from 'flu; they seem feasible while you're resting, then you attempt them and...nope.

Kitty, Reply above (failed to link , sorry)

 

[richie]

Yes. And it's not just fatigue, a lot of us feel ill. Sore throat, swollen glands, headache, nausea, hot/cold/hot/cold. Light's brighter, sound's louder, whole body's uncomfortable.

I'm sure it varies, but for me fatigue's not even the most troublesome feature. It's the combination of immune-type symptoms with extra-rapid fatiguability, where normally doable tasks leave me shaky, dizzy and sweaty. It's like trying to do things too soon when recovering from 'flu; they seem feasible while you're resting, then you attempt them and...nope.

I do not doubt that people with sarcoid have persistent fatigue. The issue is PEM, which I have come to understand as something quite different from the persistent fatigue I saw on a daily basis in people with RA, Lupus, Ank Spond or indeed sarcoid. People with RA do not 'crash' in the way PWME do as far as I know. The article talks of being unable to do things for two days. As I understand it for PWME the situation is much more like Snakes and Ladders so that you suddenly find yourself back on the bottom line for weeks.

Kitty. JE. This, from a patient, may interest you.

"Chronic, multi system here. Full on fatigue from the minute I wake until bed. Any activity, whether it be washing up or taking a shower then requires a sit down. Going out for errands or to the dr means I’ll pay with about a week of extra pain and even more fatigue. I was dx’d in the late 1990’s and have been on daily meds to treat the sarc since then".

I think there is a parallel in the experience though the sarcoid malaise as a condition may be different from ME PEM. I am concerned that assertions that PEM and sarcoid malaise are different do not veer into diminishing the serious nature of sarcoid EM.

 

[Lou B Lou]

It's the extreme and prolonged nature of PEM/ME relapse that is perpetually diminished. ME PEM may reduce over days, or a week, but not in my experience - more like many weeks, or months, 2, 6 or more months to get back to my level of functioning before whatever it was that caused the PEM.

 

[richie]

It's the extreme and prolonged nature of PEM/ME relapse that is perpetually diminished. ME PEM may reduce over days, or a week, but not in my experience - more like many weeks, or months, 2, 6 or more months to get back to my level of functioning before whatever it was that caused the PEM.

I am sorry for your experience and I agree that PEM is not appreciated enough whether PEM of ME or post exertional sarcoid phenomena - and neither of course is basic fatigue.