Accurate wording related to ME/CFS

[Trish]

I think the term flu-like is often used in lists of symptoms of PEM, along with other common symptoms and reduced function. That's the version for formal clinical use.

Another way it is used is in metaphors trying to convey the impact of PEM, where a pwME describe PEM as feeling like a combination of flu, hangover, and having run a marathon. Hit by a truck, sat on by an elephant and other colurful images are somtimes used to convey being forced to lie still in the dark feeling extremely awful.

If we want a very brief few words for PEM, I might just say feeling very ill and can't function.

 

[Holinger]

Having been concussed twice I could say to people the feeling of PEM is sort of a concussive feeling but not many would understand what that feels like.

 

[Tree]

Having been concussed twice I could say to people the feeling of PEM is sort of a concussive feeling but not many would understand what that feels like

Agree

 

[neophyte32]

Having been concussed twice I could say to people the feeling of PEM is sort of a concussive feeling but not many would understand what that feels like.

Totally agree. PEM is like a concussion for me. Pressure in the head/ears, behind my right eye, my front head hurts with a exhaustion.
I feel like my brain is permanently damaged.

 

[Bantram]

if I have to describe it, I usually say something like pathological weakness caused by dysfunction of the mitochondria. The mitochondria produce far too little energy, and my body suffers from this deficit and I have headaches, muscle aches etc. When in PEM, everything worsens and I also get FLU-like symptoms.

 

[Kitty]

if I have to describe it, I usually say something like pathological weakness caused by dysfunction of the mitochondria.

Unfortunately that's likely to lead to a significant loss of credibility, especially with doctors. It suggests we know things about ME/CFS that we don't.

It also has the potential to harm the wider community by undermining everyone's credibility. Lots of people post 'knowledge' like this on social media, but it might be best not amplify it.

People with ME/CFS do feel weak and exhausted, and many get headaches and muscle pain. It's horrible, there's nothing wrong with saying so, and it doesn't need an explanation.


ETA: sorry if that sounds a bit blunt! I don't mean any offence.

 

[Jonathan Edwards]

if I have to describe it, I usually say something like pathological weakness caused by dysfunction of the mitochondria. T

Trouble is, as Kitty says, the evidence we have suggests that there is nothing wrong with the mitochondria. The idea that there is stems from some rather dubious studies from forty years ago that were never repeatable.

 

[AliceLily]

I wish I knew how to describe accurately the severe 'vertigo like' imbalance I had 2 days before the cold appeared that caused my early ME/CFS onset. I had never experienced anything like it in my life before then.

 

[Holinger]

if I have to describe it, I usually say something like pathological weakness caused by dysfunction of the mitochondria. The mitochondria produce far too little energy, and my body suffers from this deficit and I have headaches, muscle aches etc. When in PEM, everything worsens and I also get FLU-like symptoms.

Hi, I think it would be preferable to work out me/cfs if this was the case. But as a layman I have to believe the scientists and medicos on here that think at this stage dysfunction of the mitochondria doesn’t really add up.

 

[MrMagoo]

It depends on your local wording, but “feeling rough, like I’m coming down with flu or a virus” elicits the right sort of response when I say it.

I think others can relate to the feeling of getting the flu, which side steps the “it’s exactly like flu” issue. Also people know the difference between coming down with a cold (not so terrible) versus coming down with a virus or flu (awful)

I avoid hangover, partly because I don’t want the association of drinking or payback for a good time, partly because it describes post-migraine better for me.

 

[NelliePledge]

It depends on your local wording, but “feeling rough, like I’m coming down with flu or a virus” elicits the right sort of response when I say it.

I think others can relate to the feeling of getting the flu, which side steps the “it’s exactly like flu” issue. Also people know the difference between coming down with a cold (not so terrible) versus coming down with a virus or flu (awful)

I avoid hangover, partly because I don’t want the association of drinking or payback for a good time, partly because it describes post-migraine better for me.

Yes. One member of my extended family once asked me at a gathering what ME is like and when I said that it’s like I’m coming down with flu a lot of the time he was quite shocked at the thought of that.

 

[ScoutB]

It depends on your local wording, but “feeling rough, like I’m coming down with flu or a virus” elicits the right sort of response when I say it.

Very true. I guess people maybe think of fatigue/tiredness as something to be overcome, whereas the flu they rightly remember as just badness you can't do anything about, just endure.

 

[MrMagoo]

Very true. I guess people maybe think of fatigue/tiredness as something to be overcome, whereas the flu they rightly remember as just badness you can't do anything about, just endure.

Also that feeling of “coming down with flu” when you are just getting it, you’re not yet in bed sweating whilst shivering, but you know the pain and fatigue is bad, it’s not “just” a cold, a headache or a sore throat. The whole body is in trouble, you shouldn’t try to walk/sleep it off or anything, it’s time to cancel plans and take to bed.

 

[wallfish]

Use of the word 'rehabilitation' in relation to ME/CFS is discussed in this post and some that follow it. SNT Gatchaman suggests to challenge it with 'adaptation'.

 

[Sean]

Perhaps 'management' might also be a useful term. Though that does have problematic baggage via 'activity management'.

 

[Utsikt]

There were some discussion a while back about what pacing could be called instead because it’s been co-opted by the BPS folks. «Rationing» was high on my list.

Management feels like someone is going to manage you. I don’t want that, I just need help with doing the things I can’t do myself.

 

[wallfish]

Discussion about the accuracy of the words "to die from ME/CFS" in the thread these quotes link to:

This is quite a dangerous statement to make. Some people die of starvation or suicide as a consequence of ME/CFS but stories about people dying of ME/CFS have probably contributed to others dying by ensuring that nobody has any idea what they are doing when a patient needs help.

Because from what I see here, my impression is that Scheibenbogen might prefer to say "died of ME/CFS" simply because saying the truth is too incendiary. Justly so, but it's pretty much an accusation of social murder and/or criminal negligence that implicates all levels of governments, the health care systems and the medical associations.

 

[bobbler]

Perhaps 'management' might also be a useful term. Though that does have problematic baggage via 'activity management'.

agreed. and adaptation wouldn't work because it would be used to mean 'we should adapt ourselves' rather than the environment / committments. even the term adjustment - used for 'reasonable adjustment' can get warped to mean 'people need to just adjust themselves' and become some nightmare therapy idea.

 

[Sean]

A key problem in the labeling game is that whatever we come up with the BPS club will simply hijack it and pervert it to their own ends.

'Pacing up', for example.

 

[MrMagoo]

Yeah, the real problem is the word being “re-interpreted” or basically misused, rather than the word itself.

Can I just also say I hate the term “energy envelope” and wish it would just go away?

I’m back to rationing. Which is what you do when you don’t have enough. Everyone knows rationing is done to eke out a supply in tough conditions. Rationing activity, rationing energy.