Postexertional Malaise Syndrome?

How about calling this illness "postexertional malaise syndrome"?

It seems such an obviously good name.

 

Is there something good about "syndrome"? Disorder?

 

Is this just an idea from you or something being suggested/pushed elsewhere?

It's a tricky one.

Post exertional malaise in itself is enough but does need to somehow be underlined I agree. The issue is that is becoming targeted and warped by some into 'post-exercise' (or worse many hear or imagine they mean exercise rather than exertion anyway) - and the word 'malaise' doesn't really have much meaning. So it could be sharpened up as a term. But it does need to be underlined in a way that can't be played with or have people thinking 'yeah I get that, you get tired after doing something' presumption so don't listen to how it means something different.

On the other hand I'd like to move it past 'tropes' of everyone expecting someone to just be slow and tired, because certainly before recently people would have seen someone more 'power down robot' after a certain time at best, or just never seen the after-effects (other than the wired bit - which they didn't realise was that)

I liked something like broken battery if we are trying to communicate an 'essence' but then you get boxed in by the 'strictly accurate on the science' front. Goodness help us with something that might have different types if we go down the try and get more specific route either. But it feels neither ME nor CFS and their sub-words covers this either.

I do really hate the word syndrome. Particularly given our context, history and what many have had to endure.

You then have a difference between the 'newbies and going forward' and the 'damage already done, as well as still affected by that.

 

It is much more appropriate and fitting than CFS. But after the stigma has been bedded in then my one concern is that those who are less than kind might use it as a 'can't tolerate anything'/putting it into their own layman's terms that are less than kind.

I thought it was disease rather than disorder - which if so, was one key improvement along with the 'systemic' part in feeling closer to a description that actually meant something near what we have. I'm very cagey about terms like disorder and syndrome because it opens it all up to just being something we should fix behaviourally, I don't think I need to ask myself whether that is me being 'sensitive' because there has been actually 'pushing' of that suggestion for so long it sort of doesn't matter.

 

I'm sorry, this is my idea

 

I wouldn't wan't the word 'malaise' anywhere near the name for the illness/disease.

 

Acronym PMS might be problematic

 

Ahh thanks for confirming! No it is a good discussion - just wondered whether there had been a paper on it from one angle or another (in which case the context would have been relevant for me to take a look at)

 

It's obviously PEMS.

 

What were the reasons SEID didn't work out? It seems pretty good to me.

 

I think SEID is the best name we've had so far but the IOM really screwed up by not declaring SEID a separate entity from CFS, so now the Wikipedia article for SEID redirects to CFS and we're back to square one.

 

Lukewarm reception overall, and maybe this: "SEID is killing ME"
https://www.meadvocacy.org/seid_is_killing_me

Maybe with the next IOM report?

 

Or to contrive an ever better acronym (that is also probably more accurate for me) we could go for Post Exertional ZZZZZZs or Post Exertional Zero(left/out?) - but it sort of might get the point across somewhat better than fatigue describing feeling a bit tired after running a marathon?

 

I have in the past wondered whether having a name that uses words with everyday meanings is actually unhelpful. I prefer a name that is not obviously understandable to the lay audience, but rather something obscure that requires people to ask what it means.

Any descriptive term for ME that has everyday terms will lead to misunderstanding. I would rather a name that is relatively obscure that conveys there is a uniques [should read ‘uniqueness’] about the condition, and that people require further information if they are going to be able to understand it at any meaningful level.

 

No, that's a terrible name for this disease, because it's possible to have the other symptoms without having PEM. PEM is one symptom, not the core dysfunction.

I dislike the term 'CFS' because of its history as a psychosomatic disorder. I try to avoid using 'ME/CFS' because of the 'CFS' part. I get the impression that 'ME' has been more of a 'we don't know what this disease is and can't do anything about it so we're mostly ignoring it' label. Now that it's recognized as a real physical disease and is getting funding and attention, I think it's an adequate label. Not perfect, but not worth the hassle and confusion of trying to change it.

 

I think SEID would have been the better choice if we could start over. History will probably limit its uptake, however. CFS is terrible, but ME has different problems — particularly as we don't know what the pathology is and ME implies the pathology. Neuroinflammation may well be a part (and I think it is) but I expect it to be downstream. ME is also hopeless as a search target, and as has also been pointed out before, the BPS / denialists retort with "everyone, look at ME", as if people were simply craving special attention.

I think if SEID isn't to be adopted, then ME/CFS should continue to be the placeholder name. The name can be replaced with a proper term, once the disease has been worked out.

(The optimist in me continues to believe that the large LC numbers will shine a much-needed light on all of this, and I expect the answers to have ramifications throughout our understanding of many diseases, as well as what have been thought to be or not be diseases).

 

What about just naming it after a patient? The trend is not to use names anymore but why not name after patients? (Has this been done?)

 

After the recognition of Long Covid, ME/CFS should have been re-named "WTTWY."

"We Tried To Warn You."