Accurate wording related to ME/CFS

W

wallfish

Established Member (Voting Rights)
I've created this thread to gather opinions on wording or phrasing related to ME/CFS.

Examples discussed elsewhere on the forum: energy vs capacity in relation to PEM and sickness behaviour. I also read a post recently that said something along the lines of: calling people with MECFS "patients" felt iffy because it implies they are receiving care or treatment, but I forgot the thread.
 
One phrase I would like to use confidently is:
the body of ME/CFS patients has a flu-like response to exertion
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I think it paints a good picture for a healthy audience when there is no space or time to list all of the common symptoms.

Are the words "flu-like response" accurate without certain measurable changes in the blood that perhaps ME/CFS does not have? I think the safer version would be:
ME/CFS patients experience flu-like feelings after exertion
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or
ME/CFS patients's bodies generate flu-like feelings after exertion
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but I feel those are less strong and more open to psychosomatic interpretations.
 
The trouble with flu like symptoms is it suggests specific symptoms including these, as listed by the NHS

Symptoms of flu​

Flu symptoms come on very quickly and can include:

  • a sudden high temperature
  • an aching body
  • feeling tired or exhausted
  • a dry cough
  • a sore throat
  • a headache
  • difficulty sleeping
  • loss of appetite
  • diarrhoea, tummy pain, feeling sick (nausea) and being sick (vomiting) – although these are less common in adults
The symptoms are similar for children, but they can also get pain in their ear, sore eyes, swollen glands and appear less active.
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I suspect the image of flu many people have is the high temperature, sore throat and runny nose. Many of us get none of those during PEM.

The way many people distinguish flu from a cold is the high temperature, which is not part of PEM.

I think the use of 'flu like symptoms' on list of possible symptoms of PEM is intended more to refer to the general debility and malaise of flu, rather than to this specific list of symptoms.
 
I would definitely call some of PEM flu like for me. Sore throat, blocked nose (but its different) and that run down feeling but I don't have a temperature and I am not sneezing or coughing. The main thing is horrendous increase in the migraine, those are what really floors me during PEM they hurt a lot, they disrupt my vision and make me hyper sensitive to sound and light. So flu like is partially right but its also wrong because we don't have a streaming nose and we aren't coughing and sneezing even if the throat is sore and the nose is blocked.
 
Trish said:
The trouble with flu like symptoms is it suggests specific symptoms including these, as listed by the NHS
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BrightCandle said:
So flu like is partially right but its also wrong because we don't have a streaming nose and we aren't coughing and sneezing even if the throat is sore and the nose is blocked.
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Would the differences with actual flu symptoms not be absorbed by the 'like' in 'flu-like'? In my native language, I'd say that's a fair call, but I'm not sure about English.
 
wallfish said:
Would the differences with actual flu symptoms not be absorbed by the 'like' in 'flu-like'? In my native language, I'd say that's a fair call, but I'm not sure about English.
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Flu like to me means its Flu but I haven't tested it, it is like flu and probably is. Whereas this isn't probably flu, its impact on similar areas but in a different way, it feels different, its more a sensation of swelling and pain without the body/infection induced reflexes. If a doctor reads flu like they are going to expect a patient in PEM coughs, sneezes and has a temperature and none of that is right.
 
Trish said:
I think the use of 'flu like symptoms' on list of possible symptoms of PEM is intended more to refer to the general debility and malaise of flu, rather than to this specific list of symptoms.
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Yes, I tend to agree with @wallfish that this is likely to be understood, so I don't see a big problem with the description.

I think 'flu-like response' is a bit problematic because it implies more than we know and flu is not really a response anyway. We don't actually know that there is a body response to exertion. It may feel like that but the link may be more complicated. I am wary of anything that sounds like physiology when we don;t have any.
 
Of those 9 listed symptoms of flu I would only have to take out temperature, cough and stomach problems so describing PEM as flu like to me is fine and pretty accurate. I actually look infective or sick when in deep PEM. One thing I found interesting is that Professor Andrew Lloyd described a ‘post exertional symptom exacerbation’ as ‘flu like symptoms’ and like a ‘sickness response’ in a talk before he retired. I thought that was interesting.
 
Jonathan Edwards said:
I think 'flu-like response' is a bit problematic because it implies more than we know and flu is not really a response anyway. We don't actually know that there is a body response to exertion. It may feel like that but the link may be more complicated. I am wary of anything that sounds like physiology when we don;t have any.
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Yes, that's what I wanted to be careful about.

I will use "people with ME/CFS experience flu-like symptoms after exertion", except maybe in some casual conversation. Thanks for your opinions all. I will likely be back with a new phrase soon.
 
As for the general question, I guess it's about avoiding saying anything we don't know to be the case.

All we really know is how ME/CFS makes us feel. Describing feelings of illness is fine; the problems start when people come up with theories as to why they feel like that, or imply the reason is known or partially understood.
 
Kitty said:
As for the general question, I guess it's about avoiding saying anything we don't know to be the case.

All we really know is how ME/CFS makes us feel. Describing feelings of illness is fine; the problems start when people come up with theories as to why they feel like that, or imply the reason is known or partially understood.
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Oops, I didn't mean to ask a general question. I plan to come back to this thread whenever I need an opinion about a specific phrase or word related to ME/CFS.

But I agree with what you write. The challenge, I find, is to find words with maximum impact that still respect the bounds of accuracy.
 
Flue like - I feel comfortable with ‘flue like’ in that often I find it hard to know if I am in PEM or coming down with a virus, which is something that others also report. This did mean in my very early stages I could not distinguish between my presumed triggering infection (glandular fever/mono/acute EBV) and ongoing symptoms that would eventually be diagnosed as ME/CFS.

I can get a runny nose or even chest pains akin to the start of bronchitis linked to PEM, making even harder to distinguish it from some sort of infection, meaning it may take a few hours or even a day or so until the course of the PEM makes it clearer that it is not an emerging infection.

Like a hangover - Often when describing PEM to people I will say ‘flue like’ or ‘as though I have ‘a severe hangover’. I find it useful using both together. The hangover wording raises the experience of feeling poisoned that many report, but also by using both together it makes it clear I am striving for comparators rather than intending to be taken literally.

Currently I have a headache, nausea, mild discomfort in my throat and mild yuckiness. I currently I can not be certain whether this is just a general ME/CFS impact, particularly because I have just woken and it usually takes a couple of hours to recover from sleeping, or if I am coming down with something, or I have developing PEM. A review of my recent activity, I did go on a brief shopping trip 48 hours ago but spent the time since mainly lying down, makes the first option the most likely, but I will not be sure until after my tablets I have gone back to bed for several hours.

Complex multi system - I am not advocating the use of this phrase and I do understand why it is just plain wrong, but it does crudely explain an aspect of ME/CFS that I feel needs to be expressed. Namely that the symptom configuration does not superficially fit into how medicine divides up illnesses and diseases. We have symptoms that cross the divide of different bodily systems and do not fit comfortably into how medicine in terms of its specialisms divivies up the patient/disease universe. Would using a phrase along the lines of ‘diverse symptoms that can appear in multiple biological systems’ help?
 
I really dislike the term flu-like, it does nothing to describe what severe me/cfs has been like for me. The ‘feeling ill’ side of it or having ‘flu like symptoms” is really minimal and ai could cope with it, it’s everything else that is the problem. It is used so often though and seems to be seen as a core part of me/cfs and the reaction to exertion in lots of wrote ups that for many years I assumed I couldn’t have me/cfs. But I recognise it is useful for others. And have used combinations of a hangover or flu to try to get close to explaining to others parts of what this is.

And that’s one of the problems I think with trying to determine these definitive and accurate terms, few exist. It’s good to try but we need to be aware of the limitations and that how different people interpret these terms varies, those without me/cfs as well as those with, and that can have unintended consequences on how we are seen.

Generally these days I just try to accept that you cannot accurately describe something to someone if they have not experienced it. And that our experiences and interpretations do vary. But that doesn’t help explaining to others, it is tricky.
 
I have been trying to adequately describe this feeling for a year now without much success. It is something I have never felt in my healthy life before.

Like a hangover is nice because it conveys the noise and light sensitivity to a degree.

Like a flu is nice because it conveys the general whole-body malaise. Every muscle in the body feels "off".

I have been told my attempts to describe it sound like an upcoming migraine attack. I can imagine that this would be similar, but it will not be understood by everyone, since not everyone experiences migraines.

When I was milder, I said my muscles feel like I had just run 10km, even though I just walked 500m.

I used to call it "spiky" or "thorny" but obviously that does not work in a more formal setting.

Still, it is all not quite to the point for me and I haven't found any better description.
 
hotblack said:
I really dislike the term flu-like, it does nothing to describe what severe me/cfs has been like for me.
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That's a good point, the use of the phrase is specific to certain situations. I'd be surprised to hear it used to capture severe ME/CFS, but it does a decent job with PEM in mild and moderate illness.

Even then I don't think it's meant to convey the whole experience. It's to offer insight; most healthy people have an understanding of how dreadful a bout of 'flu or a bad hangover can feel. It also helps demonstrate how vastly different one day can be to another; we're only usually seen before the PEM hits, and yes, we often look reasonably healthy. The following days are a whole other kettle of fish.
 
wallfish said:
One phrase I would like to use confidently is:

I think it paints a good picture for a healthy audience when there is no space or time to list all of the common symptoms.

Are the words "flu-like response" accurate without certain measurable changes in the blood that perhaps ME/CFS does not have? I think the safer version would be:

or

but I feel those are less strong and more open to psychosomatic interpretations.
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The issue I have with the use of ‘flu-like symptoms’ is that flu is minimized so much. Often people say, oh it is just a flu.
Also it is not very precise. Flu can have many symptoms, so what of these symptoms are we referring to?

I would prefer to be more precise and describe the symptoms.

For instance;
- an increase in body temperature;
- stiff muscles;
- etc
 
I do get a flu-like feeling when in bad PEM, but I rarely get it when just overdoing things a bit.

I think no matter what we say, some people are going to say «you don’t see me complaining when I’m sick, I just keep going». So maybe aiming at the people with a minimum of empathy might be best. I think they would understand that combining the flu and a terrible hangover is unpleasant and disabling.
 
Well put @fst
One thing I found is this is the first place that I’ve been able to have proper conversations with other people with me/cfs about the experience of it. Of the uncertainty and complexity, the problems describing it, but also if you accept the fuzziness of it all the huge commonality between us, even at different levels of severity.

I’m not sure how well we can capture that in a few words but it is a noble goal! And the certainty some try to push of things (be they experiences or indeed findings in research or particular treatments or recoveries) is one thing I guess pushed me away from other communities. But I understand the desire to hold onto something firmly given all people go through and how much uncertainty we live with.
 
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