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

[Sean]

The least inaccurate description I have seen was like having a really bad flu, and the worst hangover you have ever had, and having just run a marathon in hot humid weather.

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When the name CFS was first proposed, in the late 80s, the people writing the criteria were explicitly warned by some patients that the F word was seriously inappropriate, and that it would play straight into the hands of the psychs.

History proved them tragically correct, of course.

In fairness, one of those authors of the original criteria, Prof. Anthony Komaroff, has since acknowledged that and apologised for it.

AFAIK, the rest of them have not.

 

[Saz94]

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?

I'm not trying to suggest that people with "mild" ME aren't sick. I had "mild" ME at one point myself. "Mild" isn't really an appropriate term for it, but it's the one that's generally used. We do need to be able to say that some are more severely affected than others - and to recognise that the experience of someone at the "milder" end of the illness is vastly different from the experience of somebody at the "very severe" end. That doesn't mean I'm saying that the experiences of "mild" patients don't matter, of course they do.

 

[Art Vandelay]

When the name CFS was first proposed, in the late 80s, the people writing the criteria were explicitly warned by some patients that the F word was seriously inappropriate, and that it would play straight into the hands of the psychs.

When I was first diagnosed by a specialist physician in the late 90s, he asked me to list my 10 worst symptoms. I can't remember what I said but it would have included the flu-like symptoms, sore glands, insomnia, gut issues, brain fog, etc.

When I finished, he said "I notice that you didn't mention fatigue?"

I said that if I was fatigued, then that would be something that was simple to push though and ignore.

He nodded as if he'd heard this many times before and observed that virtually none of his patients mentioned the word 'fatigue'.

Being very unaware of the politics around ME/CFS at the time, I didn't realise the wider point that he was making. He was very dismissive of the name 'CFS' and emphasis on fatigue in the accompanying criteria.

 

[Milo]

I'm not trying to suggest that people with "mild" ME aren't sick. I had "mild" ME at one point myself. "Mild" isn't really an appropriate term for it, but it's the one that's generally used. We do need to be able to say that some are more severely affected from others - and to recognise that the experience of someone at the "milder" end of the illness is vastly different from the experience of somebody at the "very severe" end. That doesn't mean I'm saying that the experiences of "mild" patients don't matter, of course they do.

Thank you for clarifying @Sarah94

 

[Saz94]

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?

Also I disagree wrt the 50% thing. Plenty of people with "mild" ME have a lower reduction in functioning than that. Still a reduction which affects them significantly, for sure. But we can't wait until they drop to 50% to diagnose them with ME.

 

[EzzieD]

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.

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.

These quotes, exactly. All the banging on about 'fatigue'/'profound tiredness' from the medical establishment is a red rag to a bull for me. Really wish they would listen to patients and get it right. The only contribution I can make to describing 'fatigue' as applies to ME, is that of quick, painful and profound muscle fatigue when trying to do something that requires physical effort for more than about 30 seconds.

The generalised feeling of being 'tired' or 'fatigued' is something that used to happen to me when I was fit and healthy and had been working too hard or too many long hours, and then a good night's sleep would take care of that. Since acquiring ME and having to give up work (and most of any sort of physically active life), I haven't had that particular issue!

 

[JemPD]

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.

good point @Hutan I also have all over body aches & burning. I should have said without the pain only at the infection site.
Also interesting what you said about the altitude, ive not experienced altitude.

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.

(my bolding) Agreed.

But yes no mucous, I do get very nauseated though & have horrible chills despite the lack of a fever reading on the thermometer.
ME is so bizarre.

 

[JemPD]

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.

this

All the banging on about 'fatigue'/'profound tiredness' from the medical establishment is a red rag to a bull for me.

me too!! and because of this I see many more patients using it too nowadays - I guess they more recently diagnosed. And even my family have started asking me 'how is me fatigue?'. 10 yrs ago they never said that, that asked me how ill I was feeling. It drives me bananas.

The generalised feeling of being 'tired' or 'fatigued' is something that used to happen to me when I was fit and healthy and had been working too hard or too many long hours, and then a good night's sleep would take care of that. Since acquiring ME and having to give up work (and most of any sort of physically active life), I haven't had that particular issue!

precisely

 

[Mij]

I guess they more recently diagnosed. And even my family have started asking me 'how is me fatigue?'. 10 yrs ago they never said that, that asked me how ill I was feeling. It drives me bananas.

My GP who I've been seeing for 34 years asked me twice (in 29 years with ME) 'how is your fatigue', and I explained to her that it was more of a lack of physical and cognitive stamina, and that I need to lie down and 'recharge' frequently.

My sister who works abroad commented once that her friend who she goes to the gym with has "fatigue", and then said "she has what you have". My reply was, "what do I have? You realize that I've disabled for over 25 years, right?" Silence.

 

[Squeezy]

I'm in a bad crash right now, and I find the difference between those of us who DO have appalling sleep-related exhaustion in addition to muscular and cognitive exhaustion, very interesting.

My sleep is dreadful anyway, so I'm always chronically sleep deprived - a fair few of us have serious sleep issues, so maybe this factors in?

When not in in a crash, I prefer not to sleep during the day, but to just rest my body, as it doesn't help and I wake feeling worse. It's no effort to just mindfully meditate without dropping off.

But when I'm badly crashed, I HAVE to sleep. No fighting it. Frequent naps in the day, and sleeping better than usual, although not normally, at night.

I know from reading up, that it's impossible to "catch up" on lost sleep. If only that's what my brain was doing!

My best guess is that I've simply run out of energy in my brain, and it shuts down to conserve it's resources.

That's my theory for my migraines coming on, too.

Ah, I guess I'm saying it's that protective hibernation thing. Dauer?

 

[Louie41]

I wonder if the reason we have so much trouble talking about this disease is because we have no words. I know I can never find any that seem adequate.

And think about it: Our disease may have characteristics that have never before been seen in human history and therefore we don't have words for it. Words come from experience; people who live in the far northern climes have as many as 23 words for different kinds of snow. The words we have lack that kind of precision.

 

[Saz94]

I wonder if the reason we have so much trouble talking about this disease is because we have no words. I know I can never find any that seem adequate.

And think about it: Our disease may have characteristics that have never before been seen in human history and therefore we don't have words for it. Words come from experience; people who live in the far northern climes have as many as 23 words for different kinds of snow. The words we have lack that kind of precision.

Yes, maybe we should create a new word and define it.

I vote for "frobbadacious".


PS: oh dear, now I have the "supercalifragilisticexpialidocious" song in my head!

 

[Barry]

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

What comes across to me in this thread is: there is no single word that can possibly describe that component of pwME's suffering that non-sufferers, with hopeless inadequacy, call 'fatigue'.

Whilst pondering this the word 'weakness' did occur to me, but seemed to only cover part of the 'fatigue' component. But if we were to accept that it needs several words, and that no one word can suffice, then maybe 'weakness' would be a valid candidate for inclusion? Or maybe "all consuming weakness"? But the 'fatigue' symptom is clearly more than this.

 

[Ravn]

Mission impossible, in my experience at least.

I've certainly tried to convey to others what ME is like but I don't think it ever really got through, and not always through lack of trying to understand by the other party. Just the natural limits of human imagination and memory at play, I suspect.

We can't really imagine what we haven't experienced and that may be just as well. Think of all the horrors we see or hear about in the news. Sure, we understand that it must be terrifying and painful to get stabbed for example but I bet that anyone unfortunate enough to find out what it's really like will find reality rather worse than previous attempts at imagining it. If we could imagine with real-life vividness we'd all go mad with terror.

Same with memory. Even if somebody has experienced something particularly nasty that memory fades, and often quite quickly, too. Heck, even I can't truly remember the full horror of PEM from one episode to the next, and they happen often enough. When I'm at my worst I invariably swear on the grave of my grandmother that I will never leave the house again. Not worth it, ever. A few days later I start looking forward to the following month's outing that I know perfectly well will send me back into PEM, so worth it. So memory is almost always like a faded photograph compared to vivid reality. You can see what it's meant to be but the experience isn't the same. Except maybe for people with PTSD, which is why fading memory can be a good thing.

Anyway, that was a long-winded way of explaining why I don't think we'll ever get people to really understand us.

When I did try it was usually with a variation on the theme of having just run a marathon at altitude while jet-lagged, sleep-deprived and suffering the flu. Plus a hangover.

These days I mostly just say remember the most miserably sick you've ever felt, then multiply by a factor of 10 or 50 or a 100 or whatever, depending on who I'm talking to. A healthy youngster who's never been ill gets the 100 whereas somebody who's just been through a rough course of chemo gets away with a 10. The main point I'm trying to make is that ME is horrid and PEM is uberhorrid and that's all you need to know.

Or if I don't have the energy for talking I just say I feel completely wiped out.

 

[lansbergen]

have horrible chills despite the lack of a fever reading on the thermometer.

Yep

 

[Trish]

My short answer is, I'm not fatigued, I'm sick.

Seriously though, I think the more we can get the message across that ME and/or CFS are not about fatigue at all, that it's a misnomer. It's about being ill with symptoms that range from unpleasant to horrible. And it's about 'normal' activity making the symptoms worse.

I sometimes describe it as a strange illness where the more exercise you do, the sicker you get, and the less you are able to do.

 

[dangermouse]

Pre ME - I had severe food poisoning whist on holiday abroad. I was so weak I had to lie on the floor at the front of the aircraft on flight home. I didn’t have strength to sit upright.

I had to have a wheelchair from aircraft to airport & around airport to taxi.

I was bedbound for a while recovering.

I was sick. Poisoned. Weak.

That’s along the lines of how a bad relapse feels for me.

 

[Barry]

Bearing in mind I do not have ME/CFS.

I have had a few severe bouts of cellulitis over the years, which amongst other things manifests with a pretty nasty fever. If it comes on in the night (meaning you get less warning and only wake up once it's well advanced), and I have to get to the bathroom urgently, as well as feeling diabolical I also feel really weak, and wonder if I'm actually capable of getting to the bathroom. That's the nearest I can imagine what it is like for pwME.

 

[JemPD]

I've never had cellulitis @Barry but yes i'd say that was very like it indeed.
That wondering of 'am I going to make it to the bathroom' is very familiar....

Now imagine some dick of a Dr suggested that that 'wondering', was itself what made you feel weak. Errr no Dr it's the sensation of overwhelming weakness that made me wonder...

I know you don't need any convincing of the perversity of the BPS thinking Barry.... but just thought i'd mention it in case there are any of them reading this.

 

[Barry]

but just thought i'd mention it in case there are any of them reading this.

Hope so .