How to explain the 'fatigue' of ME/CFS to non-sufferers - comparisons they could understand

[Barry]

I think one of the greatest advocacy hurdles, albeit not necessarily recognised as such, is the fact non-sufferers cannot know what it is like to have ME/CFS, whilst believing they do.

My wife has ME/CFS, not me. At best I can only get glimpses into what the 'fatigue' aspect is like for her, let alone for others.

I'm homing in on the fatigue side of things, because it seems to be the most misunderstood and misrepresented symptom of all. If non-sufferers could have real insight, then it might just help a tiny bit.

It would be good to have comparisons that most non-sufferers could identify with, to better understand - to have real insight.

Can pwME here recall illness experiences from before you had ME/CFS that gave you fatigue similar to how it is with ME/CFS? Non-sufferers will only gain insights into what the 'fatigue' is like if it relates to something they have themselves already experienced.

Prompted by me pondering that if many of these researchers were to have ME/CFS for just one month, and really know what it was like, then they would start to really understand what an awful lot of twaddle they have been spouting all these years about 'fatigue' and chronic fatigue, as relating to pwME.

 

[ME/CFS Skeptic]

I usually compare it to the fatigue people have following a severe infection or a major surgery. It's not the sleepy-type of fatigue you get from staying awake for more than 24 hours, nor the tiredness you get from working really hard (which sometimes can be pleasant).

 

[lansbergen]

Can pwME here recall illness experiences from before you had ME/CFS that gave you fatigue similar to how it is with ME/CFS?

Not me.

It is overwelming and can come up in a second.

One strange thing I noticed. When I rested in a flare, just lying down on the sofa. Suddenly the overwelming fatique started and very fast spread to surrounding tissue.

 

[lansbergen]

It's not the sleepy-type of fatigue you get from saying awake for more than 24 hours, nor the tiredness you get from working really hard (which sometimes can be pleasant).

I agree

 

[Hoopoe]

Sickness fatigue.

 

[James Morris-Lent]

The only thing I can think back on as similar was when I had a bad flu in elementary school. Not to do with the 'flu-like' symptoms. I specifically remember reaching up to get a plate from the cabinet and my whole body shook, my heart raced, and I instinctively needed to lie down. I was watching the Battle of Hoth play out on VHS (I guess I was freaked out enough that I remember all that!) but I couldn't really making any sense of it. It wasn't that I was tired, it's that I was profoundly uncomfortable. For me that's the best word to describe ME. Severe ME is intensely, relentlessly uncomfortable. My personal threshold for 'mild' is that the discomfort is less pressing and you're energy is high enough that, even though you're still significantly impacted, you're able to occupy yourself enough such that you don't think about being uncomfortable most of the time.

The other thing to think about is, when you're a kid and you get the flu or something, if it last more than 2-3 days it starts to feel like an eternity. Just remember the relief you feel at 10 years old waking up on day 6 and feeling just about normal finally. An incredible feeling. Now think about if it never came.

 

[SallyC]

I usually compare it to the fatigue people have following a severe infection or a major surgery. It's not the sleepy-type of fatigue you get from saying awake for more than 24 hours, nor the tiredness you get from working really hard (which sometimes can be pleasant).

I totally agree, just being exhausted 'normally' is more like a desperate desire to be able to sleep, anywhere and anyhow and can be an almost comfortable feeling. I once fell asleep in a large walk-in dog kennel when on night call at vet school because the bedding was comfy and heated. I have never had that sort of feeling with this illness. It's always thoroughly unpleasant and sleep (when possible) is more an aid to shutting it down temporarily.

I haven't worded this very well but I hope you get my meaning.

 

[Snow Leopard]

I nth the suggestion of it feeling like a bad infection. Before I became ill, I remember going on 50km bike rides (I was 12-14), 10-12k fun runs etc. I had DOMS (the typical delayed onset muscle soreness), but not the persistent feeling of weakness/lack of energy and brainfog...

Maybe it's like running a marathon with a severe case of the flu?

 

[Peter T]

I try to avoid the word fatigue when describing my symptoms, rather say it is like having flue or a very bad hangover with other additional symptoms. Stressing the idea that exertion triggers a range of symptoms rather than just leaves me tired.

However, I often do find myself falling back on the words ‘exhaustion’ and ‘fatigue’ automatically. [So I obviously have not got a totally satisfactory terminology yet.]

 

[Barry]

So I obviously have not got a totally satisfactory terminology yet

This sums it up really. 'Fatigue', 'exhaustion', etc, are the nearest words we typically have to describe symptoms that are inadequately described by them.

 

[DokaGirl]

@Barry

Once after a short surgery, I was so exhausted, I could hardly move for a few days. This was pre-ME.

ETA: The exhaustion was a severe weakness, it felt almost paralyzing.

 

[rvallee]

Can pwME here recall illness experiences from before you had ME/CFS that gave you fatigue similar to how it is with ME/CFS?

Not even close and it's not even funny how far apart. I had some mild chronic fatigue for most of my teens and I was still active. So active that I know very well what it's like to push through and ignore normal levels of fatigue. Never did marathons and the like but I was still capable of always doing more, always wanting to keep doing things. Not obsessively, always as a choice, but I know exhaustion and it has almost nothing to do with it. I got sick in my mid-20's and the first big change I noticed was in band practice, I used to play high-intensity drums for 4-5 hours a few days a week, I would get so incredibly exhausted during and it got worse over time. I was barely coherent, doing things automatically.

I think the best combination is of not having eaten anything in a day, a slight hunger, jet-lag with headache on top of headache and the bone-crushing deep physical exhaustion that comes with the flu, making it impossible to do even small things like lifting a glass of water. But it is very erratic and the worst of it can be kept at bay by very careful energy management, which only helps keep the worst at bay, does not actually add anything, just prevents too much from being removed.

 

[rogerblack]

and the worst of it can be kept at bay by very careful energy management, which only helps keep the worst at bay, does not actually add anything, just prevents too much from being removed.

'I can do anything, as long as it only takes 30 seconds and I've been resting in bed and not thinking too hard the days before'.

 

[JemPD]

Not to do with the 'flu-like' symptoms. I specifically remember reaching up to get a plate from the cabinet and my whole body shook, my heart raced, and I instinctively needed to lie down. I was watching the Battle of Hoth play out on VHS (I guess I was freaked out enough that I remember all that!) but I couldn't really making any sense of it. It wasn't that I was tired, it's that I was profoundly uncomfortable. For me that's the best word to describe ME. Severe ME is intensely, relentlessly uncomfortable.

My bolding.
Absolutely James.
What you describe is what I do refer to as 'flu-like' though. What does 'flu-like' mean to you?

In my experience 'fatigue' is not intensely uncomfortable in the same way. Although someone who's never felt both things would i think say that being exhausted is uncomfortable - because they are exhausted but it's not the same sensation at all for me.
When you have flu/virus/infection (&ME) you cant get comfortable no matter where you lie down - in the most comfy bed at the perfect temperature etc etc you still feel like shite.
When you're exhausted the hardest most cramped space becomes like a 'feather bed' - blissful if only you can lie down in it & go to sleep.

I nth the suggestion of it feeling like a bad infection.

I do take on board that lots of people feel fine calling it fatigue/exhaustion... but I just loathe those words because everyone thinks they know what it feels like, because everyone has felt exhausted. ME is just, well, nothing like that. And it does my head in because it just seems like over the last 10 yrs even the majority of sufferers seem to refer to it as 'my fatigue'. But that just has nothing to do with reality in my world.

This sums it up really. 'Fatigue', 'exhaustion', etc, are the nearest words we typically have to describe symptoms that are inadequately described by them.

But for me they are not even 'near' words, it galled me having to write them on benefit forms, but i had to because they cant hear or believe any other language, so strongly has the fatigue idea taken hold. It's like when they invented the CFS thing they invented another condition entirely & it's just taken over (i'm not saying ME is not CFS, i'm saying when most lots of people talk about the 'fatigue of ME I don't recognise my experience).
Genuine Influenza/nasty infection is the only description that makes any sense to me. The bodily sensation of ME is identical, identical, to every infection I ever had regardless of whether it was a chest/throat/ear/kidney/wound infection. It the same bodily experience without the pain at the infection site.

The problem is that lots of people have never had an infection/virus bad enough to knock them off their feet, so it's tricky to have them understand. Plus because it's normally so short lived people forget what the sensations are like, you only remember them when you have another virus/infection.

If you've been unfortunate enough to have had a lot throughout your life pre-ME its so easy to identify as that - to the point where it takes me a few days to recognise when I do actually have a fever/virus/infection, it is so identical to PEM. I mean PEM has some extras of course - I never had such major cognitive impairment with an infection for example, but that's another topic

I always describe it as a bad flu/infection plus being very drunk or heavily drugged/stoned. Fatigue has nothing whatever to do with it.

Apologies to those who have heard me say all this before several times. It's a 'hot button' for me.

 

[Milo]

In this digital era, the cell phone analogy is helpful in explaining non-initiated of what it feels like when you have ME.

Figure that you get up in the morning and pick your phone as you hurry out the door. Only while in the bus you notice it’s charged at 10% and you left the cord at home. You now have only 10% battery for the whole day, and simply reading your emails while on the bus takeS half of the remaining charge.

You come back home at the end of the day, and charge your phone all night, and in the morning it’s only 10%. Again.

 

[Saz94]

In this digital era, the cell phone analogy is helpful in explaining non-initiated of what it feels like when you have ME.

Figure that you get up in the morning and pick your phone as you hurry out the door. Only while in the bus you notice it’s charged at 10% and you left the cord at home. You now have only 10% battery for the whole day, and simply reading your emails while on the bus takeS half of the remaining charge.

You come back home at the end of the day, and charge your phone all night, and in the morning it’s only 10%. Again.

Except that, whatever level of battery charge your phone has, it does all things normally until it runs out of battery. Well, my phone exhibits certain symptoms when it gets down to 5%, but apart from that it can perform all functions normally.

That might be how a person with "mild" ME feels: able to perform normally for a limited amount of time? (That's how I sometimes felt back when my ME was "mild".)

But not for someone with moderate or severe ME, or even some with mild ME.

 

[Art Vandelay]

Can pwME here recall illness experiences from before you had ME/CFS that gave you fatigue similar to how it is with ME/CFS? Non-sufferers will only gain insights into what the 'fatigue' is like if it relates to something they have themselves already experienced.

It's not fatigue. It feels nothing like fatigue that a healthy person would experience (before I got sick, I used to play a lot of sports etc and there's nothing comparable).

I feel sick. Not fatigued.

That sickness feels like a cross between the worst flu of your life with the feeling of being poisoned or drugged. On bad days, it also feels like someone has beaten me from head to toe with a baseball bat.

 

[Hutan]

Genuine Influenza/nasty infection is the only description that makes any sense to me. The bodily sensation of ME is identical, identical, to every infection I ever had regardless of whether it was a chest/throat/ear/kidney/wound infection. It the same bodily experience without the pain at the infection site.

Yes. Except that, for me, when PEM is really bad, the sort of pain that you might have with a wound infection is there too - in every bit of my body in a diffuse way - the ache, the burning, the feeling that the skin is a bit too tight.

I've also likened the fatigue specifically to being similar to trying to do work at a high altitude. Everything is more difficult - moving, thinking - and so is done more slowly and effortfully.

 

[Milo]

Except that, whatever level of battery charge your phone has, it does all things normally until it runs out of battery. Well, my phone exhibits certain symptoms when it gets down to 5%, but apart from that it can perform all functions normally.

That might be how a person with mild ME feels: able to perform normally for a limited amount of time?

But not for someone with moderate or severe ME, or even some with mild ME.

In the case of my ipad, it loses its power much faster when it goes below 10%. It is not a perfect model considering everyone’s symptoms are different, however it explains the energy levels patients function at.

I would be careful to compare ‘mild’ ME to ‘severe’ ME. By definition everyone has a drop of activity by at least 50% from baseline. We have yet no biomarker that can compare the level of functioning between the range of severity. And then those able to perform 2-day CPET may well represent what you qualify as mild. Everyone is sick, you know?

 

[James Morris-Lent]

What you describe is what I do refer to as 'flu-like' though. What does 'flu-like' mean to you?

I guess for me it means nausea, lots of mucus, chills, and all that sort of stuff. I can see that the underlying sickness feeling could also fit in that term. I guess the important part is that it is that underlying feeling that is similar.