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

[Kalliope]

This post has been copied from the Long covid in the media thread to start this new thread because it triggered a discussion of whether fatigue should be described as the 'main symptom' of Long Covid and ME/CFS. The following discussion has been moved.
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Medscape has had some pretty good articles on both ME and Long Covid, so I have no idea how they managed to come up with this in their Long COVID Quiz:

Proposed primary care guidelines for the diagnosis of long COVID suggest that if COVID symptoms persist without other etiology that reasonably explains them, and complementary test results are unaltered, long COVID diagnosis is confirmed. 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.

 

[rvallee]

If fatigue persists as the main symptom

I don't understand this obsession with a main symptom. It makes no sense at all. This is the essence of oversimplifying something so much it loses all meaning. As if symptoms can be isolated, separate from the underlying illness.

Where does this damn obsession come from?! You can't require reality to conform to simple-but-wrong explanations about anything so why should this apply, of all things, to medicine? How did this profession get so broken?

 

[alktipping]

I don't understand this obsession with a main symptom. It makes no sense at all. This is the essence of oversimplifying something so much it loses all meaning. As if symptoms can be isolated, separate from the underlying illness.

Where does this damn obsession come from?! You can't require reality to conform to simple-but-wrong explanations about anything so why should this apply, of all things, to medicine? How did this profession get so broken?

imo the profession has always been broken .the impact of high finance insurance companies very heavily involved with their get out clause regarding mental heath problems funding large numbers of illness deniers has just hastened the demise of goodwill and levels of trust . throw in the political obsession with reducing health care costs at the expense of patients wellbeing and you have this out come of medical systems being unfit for purpose .

 

[Jonathan Edwards]

I don't understand this obsession with a main symptom. It makes no sense at all.

The Medscape piece is lousy but this seemed to me reasonable. If the main problem was shortness of breath then ME/CFS would not be something to focus on. If the main problem is something most easily labelled 'fatigue', even if that just means some indescribably feeling of awfulness that makes it intolerable to continue with exertion, then ME/CFS is obviously very relevant.

I get that fatigue is a vague term but if the patients are not able to tell doctors how better to describe this indescribable feeling then what are the doctors supposed to do?

I grant that it might have been better to include all the diagnostic pointers as in the recent NICE suggestion but this does seem to me a fair way to start if space is limited.

 

[rvallee]

The Medscape piece is lousy but this seemed to me reasonable. If the main problem was shortness of breath then ME/CFS would not be something to focus on. If the main problem is something most easily labelled 'fatigue', even if that just means some indescribably feeling of awfulness that makes it intolerable to continue with exertion, then ME/CFS is obviously very relevant.

I get that fatigue is a vague term but if the patients are not able to tell doctors how better to describe this indescribable feeling then what are the doctors supposed to do?

I grant that it might have been better to include all the diagnostic pointers as in the recent NICE suggestion but this does seem to me a fair way to start if space is limited.

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.

 

[Jonathan Edwards]

What is the main symptom of a flu?

I think this is a completely non sequitur argument.
The relevant question would be more like 'which of the symptoms shown by the broad group of people covered by post-covid illness or LongCovid is most likely to indicate that they actually have flu?' The answer is fairly simple - if they have suddenly recently developed a fever.

This is not an issue of what is the 'main symptom of ME/CFS'. It is about using predominant symptoms amongst the LongCovid group to suggest this or that categorisation might be helpful, or maybe better than LongCovid.

But even in the case of discussing ME/CFS in the abstract I find it quite puzzling to hear that fatigue is not the main symptom. If there are PWME without a symptom that non-ME people have to think of as fatigue because we don't know any better then what exactly is preventing them leading a normal life? OK you might say OI, but that seems to me to be pretty much a special version of 'fatigue'. You might say pain I guess but if someone's main problem is pain and not fatigue then I would wonder whether ME/CFS was the right description.

I am entirely happy with the concept that for non-ME people the symptom that gets put under 'fatigue' is unknowable but if in addition it isn't necessarily even a main problem I begin to wonder how anyone is going to get an understanding of what we are talking about.

 

[Ariel]

But even in the case of discussing ME/CFS in the abstract I find it quite puzzling to hear that fatigue is not the main symptom. If there are PWME without a symptom that non-ME people have to think of as fatigue because we don't know any better then what exactly is preventing them leading a normal life?

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.

 

[Jonathan Edwards]

I don't think of fatigue being my main symptom because I am fortunate enough to not feel awful all the time... 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.

But if PEM isn't a sort of fatigue then I don't get what it is.
I have had Covid-19 this last week and have been asking myself questions about how things feel.
There are periods when I feel quite perky for a bit and other periods when I still feel pretty rubbish and also patches when I feel grim to the extent I go and lie down. I think fatigue covers all that reasonably well. It isn't all the time and maybe I feel grim after doing something, so although maybe not the same as PEM it is a manifestation of needing to keep activity to minimum to get by. The feeling grim isn't the least bit like feeling tired after skiing all day or even partying all night or even working night shifts two days in a row as houseman. The technical medical term for it with a virus is malaise. But PWME have complained a lot about the word malaise too...

I can see that fatigue isn't an ideal word but in a real world we need a word that can convey something from ill people to people who do not know what it is like to be ill in that way. I PWME don't like 'fatigue' then it seems to me it has to be WIITPWMEHTIFBNCTOABWAITBPEM. Whatever it is that PWME have that isn't fatigue but nobody can think of a better word and is typified by PEM.

 

[Trish]

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.

 

[Hoopoe]

Perhaps the resistance to using the term fatigue has a lot do with aspects of English language and culture, as well as the history of ME (the reduction of the illness to fatigue).

In France the ME patients decided they would try to destigmatize fatigue instead of distancing the illness from it. Maybe that shows that in French language and culture, the negative connotations of fatigue are not as strong.

There's also the possibility that ME is effectively a bunch of similar but not identical illnesses put together, which is why there is so much disagreement about certain things.

Personally I find fatigue and malaise are reasonably accurate terms, but also insufficient.

 

[rvallee]

But even in the case of discussing ME/CFS in the abstract I find it quite puzzling to hear that fatigue is not the main symptom. If there are PWME without a symptom that non-ME people have to think of as fatigue because we don't know any better then what exactly is preventing them leading a normal life? OK you might say OI, but that seems to me to be pretty much a special version of 'fatigue'. You might say pain I guess but if someone's main problem is pain and not fatigue then I would wonder whether ME/CFS was the right description.

My example of flu-like symptoms was more in the sense that it's not a definitive thing, medicine can and does work sometimes without there being a primary symptom of X. We can see the same thing happening here, with some focusing on this or that symptom as their only focus. It makes no sense here.

But as I said, I did not have the dreadful ME fatigue for many years. Yet to me it feels like the same illness, there is a common base of symptoms that were always there. I saw the same thing in LC forums, people saying this isn't fatigue because that's not their experience, then seeing them later when it hits, and usually think "fatigue" is such an inappropriate word anyway. It simply does not define the whole experience. And I see so many people in fibromyalgia forums talking about fatigue and PEM, even though their diagnosis was made from a primary symptom of chronic widespread pain.

There are clearly some symptoms that can be isolated and treated by their lone selves. It just can't be an obsession like the way it is right now. And frankly the common symptoms of illness, almost all of which are medically unexplained (correlation isn't an explanation), usually can't be isolated this way in most circumstances any more than it works with the flu. Most medication will treat clusters of symptoms, because they act on similar pathways.

That seems to go with the idea that syndromes are lesser, even though, you know: SARS. Among others. This idea is so bizarre, an arbitrary stratification based on the timeline of discovery.

 

[Jonathan Edwards]

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

Yes, there is a strong argument there.
But just as in philosophy, where 'dualism' depends on what you mean by dual, one would have to ask what is meant by exertion intolerance - what symptom is the intolerance manifest as? People with cardiac and renal failure and obese people have exertion intolerance - but of different sorts.

Maybe someone can come up with a really bright suggestion as to how to put this succinctly. But for the moment I tend to agree with Strategist.

 

[JemPD]

The feeling grim isn't the least bit like feeling tired after skiing all day or even partying all night or even working night shifts two days in a row as houseman. The technical medical term for it with a virus is malaise.

Yes, i know people dont like malaise & i agree to a point because of the connotations with swooning victorian ladies. But the problem with 'fatigue' for me is that almost everybody thinks they know what it feels like. And as you say feeling grim isnt like being exhuasted after too much work/activity.

I am forever saying 'i dont feel tired i feel ill'. I was on a zoom meeting the other day and somebody there was exhausted after no sleep for 2 nights, and somebody who should have been there wasnt there because they had a stinking cold. It was clear from (sympathetic to me) comments that people think i feel tired all the time. When i say i feel ill, it goes over their heads. They still think i feel tired.

I have repeated to them about feeling like i got the flu literally dozens of times, but recently when i had a near miss with covid & they asked me 'how are you feeling? any symptoms of illness? i hope you didnt catch it'..... and i said i got loads of symptoms but thats normal for me - i wouldnt know it was something else unless i started sneezing or coughing because ME feels like a bad virus - chills/sweats, swollen glands, aching all over, weak dizzy nauseated, sore throat etc etc, so unless i get the thermometer out or started to sneeze/cough badly i wouldnt be able to tell if i got covid...

they were shocked "gosh poor you i didnt know you felt like that for much of the time". And i wondered why because i have told them so many times. Its so frustrating, people get hypnotised by the 'fatigue' word and cant hear past it.
Its not tired it's as you say JE 'grim'.

But 'grim' doesnt translate well cross culture either, although it is an accurate reflection of how ME/viruses/infections feel for me. At least using malaise means medical people would understand better. But i think that ship's sailed and we're stuck with fatigue now. But if HPs, researchers etc think its like they feel after a 48hr shift... its not. But then some PWME say it is.

I dont know what the answer is.

ETA: which adds nothing to the discussion at all really does it, sorry!

ETA perhaps it should be called Grim Syndrome, but then people would think we were all brothers, and the BPSers would start trialling a novel form of GET following trails of breadcrumbs

 

[Hoopoe]

Systemic exertion intolerance disease wasn't so bad a name.

 

[Ariel]

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.

 

[SNT Gatchaman]

Yes, I've struggled to articulate my experience of this, which is frustrating as I have a reasonable handle on biomedical terms and concepts.

There's the exertion intolerance aspect. Your "body battery"/energy stores are (variably and unpredictably) very limited. But then there's also the delayed PEM/PESE aspect, with all the horrendous symptoms - the "feeling of being poisoned", that is a grossly unreasonable penalty for having over-discharged your limited battery.

"Fatigue" doesn't capture it. It's "uber-fatigue". Of course that's not a useful term — either scientifically or politically.

 

[Hoopoe]

A useful description is having to put in more effort than normally into ordinary movement and activities, and by that I mean at every step, when taking a glass of water, when cutting vegetables and using the stairs and all these ordinary things. It all takes so much effort and is draining.

 

[Lilas]

In France the ME patients decided they would try to destigmatize fatigue instead of distancing the illness from it. Maybe that shows that in French language and culture, the negative connotations of fatigue are not as strong.

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.

 

[Snowdrop]

Exertion intolerance to me = failure to perform at a consistent level over a short (read shorter than a normal person) time-frame with the consequence of loss of further function, possibly (likely for me) pain, and loss of focus along with other cognitive symptoms.

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.

This is not normal nor I think, experienced by many other illnesses.

 

[Snowdrop]

I also think because we must not do too much or face consequences (some times irreversible) that the lack of variety, novelty, and just generally stimulation like a normal person is a kind of ennui that might be thought of as fatigue. Or 'no get up and go'. It's fatigue adjacent or mimics fatigue. Pain is also fatiguing in it's own way but that is not "ME fatigue". At least I don't think so.

It's interesting to note that most people who ever gave it any thought have been unprepared for the real thing when they were unfortunate to fall ill with this. It is really hard to wrap one's head around. And dysautonomia, I think, complicates things too.