Identifying and renaming inaccurate, inappropriate or minimising words, phrases, etc. in ME/CFS

OI is a hard one for me. But I get leg symptoms that are very PEM distinctive and come on exactly 36hrs after legs being down eg for an hr for an appointment. Yet I agree on the short term if it was 30mins of sitting up then getting horizontal asap and resting it off is vital too (maybe/probably not 'PEM'?). It will take more deep thinking to quantify the impact of anything in-between ie how much contributes to PEM.

I'd note with the sensory that having had a noise and vibrations issue for years it turned what was rest (including the rest needed for the body to get into rest ie sleep) into exertion. SO when it becomes near constant enough there is a big issue of it with PEM at least because it creates rolling PEM due to eg you went to an appointment that needs 2 weeks solid rest to recover, except instead you are being exerted and not able to rest. The net effect for me was deterioration that when you think of the level of disability and independence being lost was super-fast, going to quite a worrying point within 1-2yrs.

On the other hand if it had been an hour of that sensory exertion it might have added to or even caused PEM. But I think a major issue is the unavoidability and how dangerous it is once you are ill enough - which could be not that severe, just in PEM already - how it seems to have an impact that is hard to describe though shouldn't be as so many people have had or seen eg a migraine and how that would react to hostile sensory stimuli, except I guess it is the length of time of the impact issue that isn't got.

but I almost suspect is like the 'washing' theory (of certain type of sleep washing the brain of certain things, which if that fails then build up) that you hear described for sleep vs alzheimers too, it isn't just intolerance if you are that poorly and have ongoing sensory assault for ongoing periods of time making deep rest interfered with of the lenght of time straight I would need in a crash to recover that.

I'm struggling for words that describe some of the things I'm thinking of being pertinent because of this. Such as just how vulnerable your whole body and brain is during PEM/crash and then I'd include just being a certain severity. And the deep rest needs and length of rest to recover needed being just as important in mentioning PEM as 'avoiding it'. Sometimes you mightn't be able to avoid it, but not getting near enough rest time to fully recover from the PEM is a level of issue I find hard to describe (hence the rolling PEM thing being more pertinent than it just being unpleasant, but something that ends in circling the drain because it involves deterioration at the end if you can't break the cycle by finding something that either increases your threshold or reduces the exertion of surroundings or both to get them nearer a match and slow it).

And rolling PEM takes a very long time to fully rest off once in safe circumstances. Hence maybe that is a fair focus to just get individual PEM and the 'time and conditions to fully rest off' being at least understood, otherwise you are carrying residue forward type thing, and its impact on threshold and sensitivites and so on. So people can envisage the maths involved when people keep shorting rest on just one round of PEM (say it takes 2 weeks) so you never quite get recovered and are still all over the place from that when the next is triggered and so on.

 

@Chestnut tree and @Kitty I think were replying to the point that if people are changing PEM to include 'non-delayed' then there needs to be a new word emphasising 'delayed-PEM' that I think @AliceLily describes.

It didn't help that I split the post for length in the end, and decided not to put the later ones as 'continued' on the same point - of it being replying to the implications of losing delayed PEM as a cardinal feature/aspect by fuzzying it out.


Because if we lose or fuzzy-out ourselves the clarity/concept that PEM is generally delayed (or lasts x time or involve x symptom) so we can't tell we have way overdone it and triggered PEM at the time, and seemed quite capable of eg lifting 20 heavy boxes because noone saw we were in bed for a week 24hrs later due to it (and that what came 24hrs later was much worse than what your colleague saw at the time when 'yes you seemed tired'), I think we need to consider the implications of that.

There are also implications if we think PEM is important for finding the mechanism in research, if we are not very very sure of what makes PEM PEM, rather than another issue. I think people used to emphasise the 'malaise' bit because it was like a reaction that happened in a delayed way, and that delay points to mechanism.

It's very hard because we all in reality have things layering on top of each other so if you are trying to describe what might be experienced at different points over a time period as a lived experience we might get the odd thing that hits us as PEM faster for certain reasons, and some fatiguability might feel like PEM. But is it a unique and useful phenomenon is an important question-mark?

 

@Hutan also made the interesting point a while back which I don't know whether it was resolved that do we define length of PEM as the length of certain symptoms ie what people count as the malaise or whatever is implicit in that - I've also just been talking about how long am I extremely debilitated and my life is ruled by that strange cycle of symptoms I know I will pass through (being awake but legs suddenly doing something distinctive like an overheated computer drive, joints going rheumaticky, then pass out sleep and can't move etc).

Or do we include how long it takes to somewhat recover from that / when all symptoms are 'raised'? - that 3 days then becomes at least a week before my sleep or function is anywhere near the norm is was before. Interfere with either in that mean time and all I will do is not only extend the PEM but put my body into a hell because trying sleep hygiene on me whilst my body is very much in the desperate need to recover and cycle back round phase and it could be use by some spy agency to drive someone over the edge as it is desperate in how it just prevents all rest and causes body to be in a state of exacerbation but that type where you need to rest in order to rest again, it is very precarious.

Who knows what proper recovery from that PEM would be if PEM was treated as a bout of serious illness and don't go back to soon etc.


It is important so that we aren't all talking at cross-purposes and undermining each other because we are talking about different bits when we describe impacts of things. Names and terms would be useful here for that, but I think also it could be helpful for what the cycle involved in PEM to actually be compared anyway to give insight in case it helps either patients or researchers.

If we are thinking about the discussion with @Trish of PEM being an episode because it is a whole washing cycle of parts that all complete as part of it (A typical washing machine cycle includes a wash stage, a rest period, a rinse, and a spin to remove water) but might have slightly different symptoms etc with them, but they all come in a similar order for us all at least then are these obvious enough we could give them terms?

 

@bobbler thank you for explaining.

My brain worm at the moment is that we don’t really know if whatever PEM turns out to be has to be delayed or if it just usually is delayed.

It could also be that there are two different mechanisms - one that produces delayed symptoms and one that produces instant symptoms.

I don’t believe we’re going to be able to hash out any concept that’s more limited than PEM without biomarkers.

But the possibility that there might be different concepts at play all at once means that any researchers have to track a lot of data and not just the 10 most common symptoms on a scale from 1 to 10 or just fatigue or whatever.

Ideally, we would put people in a care facility with all kinds of monitoring for weeks or months and have them do different tests. But that’s just a fantasy!

 

It is interesting to read all the different comments and to consider how potentially complex the entire issue is. It is important we have these discussions. But I feel at present in such as the fact sheets we need to focus on what makes PEM unique and not worry too much about the subtler aspects.

Once we have a clear cut definition of obvious PEM hopefully we will establish physiological markers that in turn will make exploring the grey areas around the edges more practicable. Just as at present ME/CFS is only in theory first diagnosed when activity levels are down at least 50% of premorbid functioning, even though this is an arbitrary line which probably has no basis in reality, I think we should only be using the term PEM where it can be clearly distinguished from the general fatigue issues and other post exertion effects seen in other conditions, even if this leaves large grey areas.

 

I agree.

I still don’t like the post-exertional malaise name because it implies causation and it’s not just malaise. But that’s a different issue.

 

Yes, there is so much to reply to in your posts @bobbler and I am not going to be able to do that but the layering factor is is constantly happening in the severe levels. I call rolling PEM and gets nastier with delayed.

 

Clarification on my comment;

To me PEM has always been ‘ a worsening of symptoms’ that sometimes has a delayed effect. So direct and delayed effect.

Now it seems we are redefining PEM as only or mostly delayed PEM.

So what are the direct effects after stimuli and exertion? To me it is definitely not normal fatigue or fatigue ability .

In my healthy life I was fatigued often I had a demanding job and a very active lifestyle with a lot of exercise. That fatigue never led to the direct effects I now have after very minimal exertion.

There is also a risk of calling direct effects after exertion fatigue of fatiguability, because it would not take into consideration that you could worsen from those small exertions.

In my view you can both worsen from direct exertions as from delayed PEM. And that would not be clear if you call direct effects normal fatigue.

Hope I have explained myself a bit better now.

 

Vocabulary that I would like to change
The vague terms:
- fatigue/tired have already been mentioned
- brain fog, as if I have some kind of mist in my brain. I would prefer terms that are more descriptive such as difficulty finding words, difficulty remembering, etc
- flu-like feeling, also vague and a lot of people diminish flu these days ‘oh, it is just a flu, so maybe describe what it is, for instance feeling feverish, a sore throat, etc
- malaise but I do not know a better alternative for it

 

I agree with @Trish here.

Although I believe PEM can be pretty instant on some occasions, even though that seems to be much less common. I would only call it PEM if it matches the symptom patterns of your regular delayed PEM.

And it shouldn’t be confused with hypersensitivities etc., unless those end up causing PEM (like how many more severe experience).

 

I tend to define it as PEM by how severe it is and how long it lasts, instead of whether it is instant or delayed.

 

Agree

 

@Chestnut tree I don’t think I am disagreeing with your meaning, but I think it is important we are clear in distinguishing PEM from other post exertion effects. Worsening of symptoms after exertion happens in other conditions, but generally rest results in pretty rapid improvement. PEM is a distinct response to exertion or over stimulation that has its own distinct course and pattern. With delayed PEM this difference is much easier to recognise.

It is unfortunate that we currently only have a set of confusing and ambiguous terms. However at present I suspect we are stuck with using lay terms as an ME/CFS technical vocabulary, and all we can do is make it clear when we are using jargon words with a specific meaning.

 

I've never been a fan of the phrase "ME patient", as it implies the provision of treatment or services by a healthcare provider. "ME sufferer" is about the best alternative I can come up with. Healthcare providers can call us "patients" once they start offering something useful, but as long as there are ME sufferers who would rather get worse or die before going to hospital (and quite a few have chosen to die rather than experience hospital "care" again), I think calling us "patients" is a bit of a presumption. Not even sure they should be using the word "care" in the context of ME either.