Fatigue - is it the main symptom of ME/CFS and Long Covid? Discussion thread

[Mij]

I don't live in France but I speak french, and I can tell you that the connotation of the word "fatigue" has exactly the same harmful connotation as everything @Trish said. I totally agree with her.

Un malaise would be taken more seriously in French than English. Would you agree?

 

[Lilas]

@Mij , I would say that the term " malaise " is less pejorative indeed than " fatigue " (very overused), but has a very vague meaning. While the expression "exertion intolerance" (intolérance à l'effort) is better in my opinion because it is significantly more specific.

 

[Mij]

My understanding is that un malaise can also include cardiac symptoms, dizziness, weakness and loss of energy in French, but malaise in English is interpreted more as a discomfort or flu-like symptoms.

So French doctor I would say malaise and English doc I would say exertion intolerance and avoid "fatigue" like the plague.

 

[Lilas]

but malaise in English is interpreted more as a discomfort or flu-like symptoms.

This is also true in french, "malaise" can also express a general discomfort: " Sensation pénible et vague d'un trouble physiologique " (French dictionary LeRobert). One of the synonyms is "incommodité " (inconvenience) which also means discomfort. That's why I still prefer " intolerance à l'effort " since it's really more specific.

 

[Wyva]

My understanding is that un malaise can also include cardiac symptoms, dizziness, weakness and loss of energy in French, but malaise in English is interpreted more as a discomfort or flu-like symptoms.

So French doctor I would say malaise and English doc I would say exertion intolerance and avoid "fatigue" like the plague.

About malaise: whenever I use PEM in my articles in Hungarian, I give the original English name and a short description too, so people can understand (and I always link a more detailed explanation that I have on my page that includes the different levels of severity and pacing, etc).

But I also kind of made it my goal to try to establish a Hungarian terminology for ME/CFS that is not too far from the original. So in my translation, PEM is something like "feeling unwell/sick after exertion". The doctor who wrote the chapter on ME/CFS in that book for students at Semmelweis University and also Professor Janszky who gave that terrible lecture on ME/CFS at the long covid symposium of the Hungarian Academy of Sciences (I wrote about both here) both use "post-exertional weakness". (I've never heard anyone else even use the term here, it's basically the three of us.)

 

[TigerLilea]

If fatigue persists as the main symptom, the team should evaluate the patient against classification criteria for chronic fatigue syndrome. A diagnosis of chronic fatigue syndrome associated with long COVID-19 may suggest physical activity programs, adapted guidelines to increase progressive resistance training, and evaluation of psychological factors.

Does this mean then that Queen Elizabeth should be evaluated for psychological factors and enrolled in GET? She has been suffering with chronic fatigue since getting Covid-19 back in February.

 

[TigerLilea]

Also, if the over exertion is big enough it will result in a wired feeling where I then get very fatigued but am simultaneously alert and unable to sleep.

That's me! The more physically active I am during the day, the longer it takes me to fall asleep that night. However, I do tend to have a deeper sleep once I get to sleep. Of course I never feel any better for it the next morning. It doesn't matter how good my sleep is, it is never refreshing.

 

[Forbin]

I think I would describe the character of the ever-present “background” fatigue in ME/CFS as being most like the fatigue you feel when you’re initially coming down with the flu. It’s not PEM, because it’s a constant regardless of exertion. Fatigue like this can be the very first sign of the flu, occurring even before you develop a fever.

Sudden, excessive fatigue is one of the earliest symptoms of the flu. It may appear before other symptoms. Fatigue is also a symptom of the common cold, but it’s usually more severe with the flu.

Extreme weakness and tiredness may interfere with your normal activities.

https://www.healthline.com/health/cold-flu/early-flu-symptoms#fatigue

I don’t know if PEM is just an amplification of this “background” fatigue (which can itself be disabling) or if PEM is something else that lies on top of the “background” fatigue. In my experience, PEM usually starts the day after exertion and diminishes over time (so long as you avoid further exertion), but the background fatigue is always there, whether you exert yourself or not.

I’d also add that I think there’s more to this ever-present feeling than just “fatigue.” There’s a sense of “interference” with normal function, both physically and cognitively. It’s like you’ve consumed something that’s producing some kind of side effects – like headache, sweating, chills, OI, tachycardia, light sensitivity, memory problems and so on.

 

[Andy]

My personal view, your mileage may vary.

I think it depends on what is understood from the use of the term fatigue. If fatigue is used, and/or understood to be, in the sense of "tired or depleted from, or as if from, exertion" then fatigue is not my main symptom. If fatigue is used in the sense of "lack, or absence, of energy", then that is the feeling I have; a constant lack of energy that then all my other symptoms are piled on top of, so arguably it is my main symptom. There is an obvious question of how linked my other symptoms are to my lower energy limits; my few periods of temporary improvement seem to suggest that they are, probably unsurprisingly, all linked as all seem to improve and worsen at, roughly, the same time.

I've used an analogy previously of my body as a car, with a reduced fuel capacity (i.e. lack of energy), that also has mechanical issues (all other symptoms bar PEM) that cause increasing problems as the journey progress, such that if I drive for a long enough time I breakdown (PEM).

I understand why fatigue gets the billing as the 'main' symptom as it is, in theory, the most easily explainable symptom for both the patient and any third party; however the problems occur when the various parties have a different understanding of what is actually meant.

Another part of the issue is trying to describe the symptoms of a condition where one person can be able to work full time, albeit with difficulties, while another can be bed bound, unable to tolerate light, needing to be tube fed, and others can be somewhere between the two extremes. What words are able to adequately cover the huge range between those two extremes?

 

[Midnattsol]

I don't think of fatigue being my main symptom because I am fortunate enough to not feel awful all the time having drastically reduced my activity. I am prevented from leading a normal life by PEM. So I can feel okay by not going out, ever, and not listening to music which I love. But I know if I listen to it I will feel awful later, like being poisoned. And a lot of the reason I can't go out apart from physically being able to get there is the sensory stuff, too loud and too many sounds mainly. Too painful in that sense.

I guess having that glossed as "fatigue" seems really misleading and I feel it's an erasure of the phenomenon of PEM. I do accept that others feel differently about fatigue and it's not that I don't experience it at all but that it doesn't feel like one of my main symptoms or problems at all. It's interesting to read this discussion as it can often feel like the concept of fatigue is being intentionally used to erase PEM in discussions of Long Covid, and that one is being subsumed under the other inaccurately and deliberately. Perhaps this is less the case than it often feels like it is? It's hard to tell with all of the politics around it.

FWIW if someone asked me my main/characteristic Long Covid symptom I would say chest/breathing problems and add that my ME became severe, or that I have developed severe ME/CFS as well following Covid. Maybe I'm used to feeling some level of "fatigue" so I think it's normal or a background thing? I don't know. I am lucky to be able to not be in a crash all the time.

Like Ariel I also don't feel awful all the time. Even sometimes when I have really bad PEM I can feel "fine" as long as I am in a reclined chair, but if I try to move I will feel awful.

I rarely feel fatigued in the way I understand the word. In Norway we can use the word "fatigue", and I see it most often in regards to illness to separate whatever the patient is feeling from general tiredness, but I don't feel the separation works very well... we also have the word "utmattelse" which is what I would use as a translation for fatigue as the Norwegian "fatigue" is not a word everyone knows. We also have "sliten/trøtt" which means tired and is a less severe feeling than "utmattet".

Like @JemPD I feel ill. Although again, I can feel perfectly fine as long as I'm not doing anything or staying within my limits, but if I go over my energy limits that day my body will just stop. To me it can feel like some sort of switch, I feel fine until I don't. When I was still able to bike to/from university there would be a marked difference between getting winded due to climbing a steep hill, and this feeling of my body just not being able to do the work anymore. I would get winded in specific situations where I required more from my body, but this off feeling could occur on flat stretches or going downhill, and it doesn't go away by slowing down or taking a break.

Edit: This feeling of my body not working may or may not occur together flu-like symptoms or cognitive impairments that I also get if I overexert myself. The "tired but wired" feeling others have described can also follow any type over overexertion, typically for me with a pounding heart despite doing whatever I can think of to calm it (such as breathing exercises, elevating my feet etc., which can get my heart rate <60 on a normal day but if I've overexerted myself it will stay at 80-90 regardless of what I do).

 

[DigitalDrifter]

I would say that harm from exercise/exertion is the main symptom of ME. Not sure what defines Long Covid, it seems very nebulous.

 

[bobbler]

I know this works sometimes, but a main symptom really makes no sense here. It varies way too much not just between individuals but for individuals themselves. Applied to us it leads to massive misdirection. Although there are other diseases where it also fails.

What is the main symptom of a flu? Even more precise, what is the main symptom of flu-like illness? The many symptoms that are typically lumped together because they vary too much. Or Lupus? The great imitator, it's not like we're a unique snowflake. Of all symptoms, fatigue is probably the one that can least be detached and focused on, there is always a cause.

This method often works, but it can't be totalitarian. With us it explicitly fails, we need a better way of thinking here. It just feels like trying the same key that doesn't fit into a lock, just because it's the key at hand. Trying it a million times won't suddenly make it fit in a lock that needs an exact match.

Flu is an interesting example. In the UK an anaology commonly used (I'm sure by TV doctors over the years, and probably real ones as well as laypersons cribbing it from whereever they hear it): "you know whether you have a bad cold or the flu because if there was a £10 note blowing around on your garden and you looked out the window and saw it, if you had a cold you'd try and pick it up but with flu you'd lie there and know you couldn't" or something like that.

Anyway, that is how good communication happens with these things - precision. I guess that is describing fatigue but few of us over here use that term for flu - you're 'in bed'. Works fine because apart from a bit of mickey-taking the impatience of those around you hasn't the same timespan to cause the same issues it does for ME.

But also we have the pain in the neck situation of describing the thousand different patterns of overdoing in different ways, to differen levels of 'layering' (or 'rolling PEM') and the output of that in different areas to different extents.

 

[bobbler]

I don't think of fatigue being my main symptom because I am fortunate enough to not feel awful all the time having drastically reduced my activity. I am prevented from leading a normal life by PEM. So I can feel okay by not going out, ever, and not listening to music which I love. But I know if I listen to it I will feel awful later, like being poisoned. And a lot of the reason I can't go out apart from physically being able to get there is the sensory stuff, too loud and too many sounds mainly. Too painful in that sense.

I guess having that glossed as "fatigue" seems really misleading and I feel it's an erasure of the phenomenon of PEM. I do accept that others feel differently about fatigue and it's not that I don't experience it at all but that it doesn't feel like one of my main symptoms or problems at all. It's interesting to read this discussion as it can often feel like the concept of fatigue is being intentionally used to erase PEM in discussions of Long Covid, and that one is being subsumed under the other inaccurately and deliberately. Perhaps this is less the case than it often feels like it is? It's hard to tell with all of the politics around it.

FWIW if someone asked me my main/characteristic Long Covid symptom I would say chest/breathing problems and add that my ME became severe, or that I have developed severe ME/CFS as well following Covid. Maybe I'm used to feeling some level of "fatigue" so I think it's normal or a background thing? I don't know. I am lucky to be able to not be in a crash all the time.

Yes, fatiguability is the 'universal', given how people will have to tenaciously manage things and many use the 'wired/adrenaline' to get through things, so the idea that you'll see someone looking a bit slow a any point in front of you is inaccurate. A former athlete and top of class no issues with academics who is collapsed with glandular fever level symptoms and 'out' for days from an evening out, or a daytrip, or who is going well on an essay until 60% through then suddenly can't wake up or at least cannot make brain work because the cumulative catches up (except most won't have got this connection at the time until repeated 50times in a row).

 

[bobbler]

I think if ME/CFS had to be described by one symptom it would be exertion (or possibly activity) intolerance.

That seems to encompass fairly well all of fatigue/exhaustion, physical and cognitive fatiguability and PEM, as well as loss of ability to function normally.

It leaves out the malaise - the feeling ill all the time, OI, pain, etc. But we can't have everything if we want a single defining symptom.

I strongly object to fatigue being used as the defining symptom because it is too easily confused with 'normal' fatigue or tiredness that everyone gets sometimes, and also with the fatigue people experience in depression, and some other chronic diseases that is not made worse by activity.

The use of fatigue as the defining symptom is the key enabling factor of the whole BPS/CBT/GET disaster.

One of the rants sent to NICE objecting to the new guidelines from the psych department of NHSEI complained that they were creating a new condition called Post exertional malaise. My inclination if I were replying would be to say yes, it's not chronic fatigue, it's exertion intolerance that leads to PEM.

Yes it is distinctive - one issue/curiosity is whether it is distinctive in the same way across all with ME. I think the PEM tells us a lot - it isn't quite what you think it is unless you live it and see the pattern adn way it varies between things, it feels like a big old signpost of your body to what might be going on if they were mapped in forensic detail across what might be different types (or might not). It is 'odd'. It isn't 'constant fatigue' of the observe someone with depression or low thyroid type.

Those how have been close to me for extended periods of the years and of the observational rather than see what your ideology tells you type remarked that it is 100% then 0%. A 0% that most people don't experience of course. And rest needed that is linked to the exertion done but nothing like the same equation a normal person would expect in order to come out of the other side of it.

Some PwME just swap that 2hrs (or whatever it is that you have that day by equation of severity x 'condition based on what you're carrying already from previous days of rest vs exertion') at 100% to eke it out over a longer time period?

This is all simplification of course, because the day any of us could be 'in control' of PEM would be the day someone who wasn't extremely 'big' in some way became able to control others and the world (people and events is the term I use). It I imagine still takes all of us by surprise with new ways our bodies can have had a 'hit' we didn't notice and mean we are in PEM one day.

 

[bobbler]

For me "fatigue" is something that is currently happening to you. PEM represents something that would hypothetically happen to you if you did something. It is also delayed. So it's something like counterfactual "fatigue" if you really need to use the term; what would happen to you if you did x, not something that is happening to you now. You can feel pretty okay but if you went for a walk, you would get ill. If you put on music, you would get ill the next day. If you read too much, you would be ill for a week. You feel fine when you do it. This is so key in managing the illness and in how it feels to have the illness. Things are dangerous for you that are not dangerous in a "fatigue" state when described as such; this concept does not capture the possibilities and dynamics of the situation. That is why I do not like it.

PEM also seems to operate on a big old cycle - you've flared something up like a big allergy or nasty acute illness has those feelings of 'I know this stage' once you've been through them enough times before. Which would be easy to explain except for the fact that different types of activity and level depending on severity elicit changes to said cycle, and of course layer on top of each other.

But a recovery cycle - I can basically speak through that one from the collapse out as I finally could (when I was moderate trying to work) in pain, exhausted and everything flared up and after enough rest then your body had rested enough to get proper rest and you felt like someone with the flu would sleeping off the worst for days in a row, then weirdly wake up feeling no better but 'through the cycle'. And explaining that moment is like you've woken from a normal person's night sleep (even though it has been a week in total) to your normal level of pain and other symptoms - so I guess if you call reduced functioning and exhaustion before you've even done anything then fatigue - ready and recuperated enough that you can begin the whole 'clocking up rolling PEM' again.

More severe, more trapped (and now more ill to start with) with only tiny cumulative overdos meaning you are never out of that - and worse when you 'come out the other side' know you are a few % worse because you didn't have much leeway so it is obvious.

Hence the exertion bit being defining as that's your 'cage' and PEM isn't fatigue at its cumulative hit it's knock out everything ill.

 

[bobbler]

I think I would describe the character of the ever-present “background” fatigue in ME/CFS as being most like the fatigue you feel when you’re initially coming down with the flu. It’s not PEM, because it’s a constant regardless of exertion. Fatigue like this can be the very first sign of the flu, occurring even before you develop a fever.


I don’t know if PEM is just an amplification of this “background” fatigue (which can itself be disabling) or if PEM is something else that lies on top of the “background” fatigue. In my experience, PEM usually starts the day after exertion and diminishes over time (so long as you avoid further exertion), but the background fatigue is always there, whether you exert yourself or not.

I’d also add that I think there’s more to this ever-present feeling than just “fatigue.” There’s a sense of “interference” with normal function, both physically and cognitively. It’s like you’ve consumed something that’s producing some kind of side effects – like headache, sweating, chills, OI, tachycardia, light sensitivity, memory problems and so on.

Good description on that aspect in last para.

There's the 'past limit' as well as PEM in the delayed sense (and various different types of this)

And if we are talking 'end of the working day' exhaustion (which a doc might term fatigue) then the closest 'story' I could use to describe is imagine that time when you were incredibly drunk knowing you had maybe minutes to try and crawl into your home in the hope you can stumble yourself into bed before your body collapsed on the floor and you slept there, and the 'do I take these uncomfortable clothes off or am I pushing my luck' even though your brain is so tired it isn't really thinking that consciously. Except that is the end of every day and you can't do a night on the floor as you'll be in a right pickle pain and symptom wise if you do that on top of everything

But even then there are horrible other new levels, like the 'been in transit without sleep for 3 days as you were in airports or whatnot' and getting tinnitis from pure exhaustion which as soon as you lay your head down will be all you have for the next x hours until you've rested enough your body can sleep.

I can tell my body is low on energy because I can't talk without closing my eyes involuntarily, even though I look very strange doing this and might already be reclined. I can then still talk myself beyond the 'wall' and into collapse even though by that point flat on back to be able to still talk. It's a weird old illness, but distinctive.

 

[JemPD]

"feeling unwell/sick after exertion"

To be honest i just wish we could use that FUAE or feeling ill after exertion' FIAE its the most accurate description for me. OR actually even better would be Being ill/unwell after exertion BIAE or BUAE. That would stop anyone thinking the F was for fatigue.

(i ignored 'sick' because in the UK that more commonly means feeling nauseated).

I'm not suggesting we push for that change, we are where we are & i dont think pushing to change terms is a useful use of time/energy. It's just what I wish were understood when i say i have ME/CFS

 

[duncan]

I'm not suggesting we push for that change, we are where we are & i dont think pushing to change terms is a useful use of time/energy. It's just what I wish were understood when i say i have ME/CFS

Too many people telling the world what it needs to interpret vague symptoms as. Too many doctors exposed to sham definitions and characteristics.

It's not surprising, really, when ME/CFS is broadly categorized as a "fatiguing illness." That's just rot when it comes to patient utility or clinical utility. Want a vague descriptor that is more pragmatic in the sense of getting the level of our severity across to doctors and researchers and friends and family and pretty much everybody.? How about "ME/CFS is a disabling disease of unknown eatiology."

Disabling vs fatiguing. They both say very little, but the former at least conveys the ruinous calamity that comes with the disease.

 

[josepdelafuente]

So useful to read so many people's experiences and thoughts on this!
There's a lot here that feels very familiar to me reading from people's experiences.
It's probably pretty crude and not accurate a lot of the time, but sometimes when I'm trying to explain to people the constant background part of my symptoms ( as opposed to the PEM part), I ask people how they feel on a really bad hangover, and then say it's like feeling like that all of the time. It's obviously not 100% accurate, but it does seem to make whoever I'm speaking to engage a bit more and get some kind of idea of the kind of 'maybe you "could" still do xyz, but it's going to feel a lot more difficult/worse than it should' aspect of the illness.
I'm also aware that lots of people's conditions are much more severe than even my constant hangover analogy would describe so apologies if that sounds like I'm minimizing, definitely not my intention. It's just been a tool that seems to have got me some results in terms of helping people around me understand.

Personally - I have both the constant background level of feeling grim all the time, and also quite extreme PEM if I push beyond my 'normal' capacity. In my experience they feel like distinct (but very closely related / interacting) symptoms, and I am curious about if we can find a good clear way to distinguish between / describe / label them, obviously without dismissing the importance of either, or the many other symptoms people have to deal with.