Activity baseline vs activity ceiling, why concepts and language matter

Excellent! Thanks for all your good work @Andy. I don't know how many more papers I can stomach that start with a variation on "ME/CFS is characterised by disabling fatigue lasting 6 months or more...". The sooner the concept of PEM takes root the better. Then your new challenge will be to ensure they don't confuse PEM with plain exercise intolerance because while the latter isn't specific to ME it is so much easier to understand that such confusion is inevitable; I'm already seeing it now.

 

A few people have mentioned stamina in various posts and I think it is an important facet of our disease. My main symptom is fatiguability, not fatigue and I can tell how well I am by how soon I have to stop something which feels as if I have run out of stamina.

I have no warning, everything as normal then... stop. Don't think that is recognised enough.

When I first used a heart rate monitor I was amazed. After forty years it was beautiful to see that when I felt I had to stop an outside machine objectively agreed with me. It gave me permission to lie down. That may be the most important function for us. Instead of family encouraging us to do a bit more they can see we can't.

After a little while I could tell when to stop (and believed it, more importantly) but it still gives me an idea of how I am doing. We know that our anaerobic threshold drops when we are ill so it is not so useful for knowing when we cross it but experienced use helps with the variability we have.

I started getting severe POTS so that is the main function of it for me now.

When I was first ill, I think a monitor would have given me a sense of control.

 

'oomph'

 

Hmm, runs the risk of the Chalder Oomph Scale, or similar, being developed...

 

Yes, this is the value of heart rate monitors, as I see it. Not so much a case of "my heart rate monitor says X, so I can't do Y", but more as an objective validation that what you say and think about your own condition at a particular point in time is a true reflection of what's happening in your body.

We're subjected to so much gaslighting about our perceptions that it can be a real relief to have something backing us up for a change.

 

I had it suggested to me that "finding one's edges" might be better than boom&bust. Quite like it.

 

The very first sentence I said about my "condition" on my PIP face to face assessment (DLA to PIP at age 67) was "I have no stamina". The assessor wrote on her "recommendations" "She says she has stamina". I complained to Atos, as they were then, with a copy to my MP. Not the only thing I complained about! Answer came back that it was "an unfortunate typo."

But at the time of the interview, it did seem to me to be the best way to describe why I was unable to do things like walk and talk and cook and shop etc etc etc. I still think it was a useful shorthand, if the damned assessor had actually reported what I actually said! Grrrr!

 

Thank you so much for tagging us in this thread - it is really interesting. We have been thinking along the same lines of a "limit/ceiling" as it certainly fits with our experience but we hadn't quite picked up on the idea of baseline and position that can be improved one which makes a lot of sense now you have pointed it out.

 

Ceiling is preferable. When you go through a relapse and sort of " stabilise" , you have reached your ceiling not your baseline.

@PhysiosforME

 

And the simple truth is that GET and CBT-a-la-PACE explicitly coerce pwME to ignore their ceiling and pretend it does not exist, is only due to false beliefs. At best pwME will be pushed into significant PEM, at worst their ME significantly worsened.

 

I understand ...I think we won’t find this holy grail of the perfect word though.

Energy (or lack of it) is linked to fitness whether we like it or not. That’s why we need to clarify use of the word with other words.

The condition is however uncomplicated

We only have a fraction of the energy we used to have and there is no known way to get more. Our bodies throw up a load of unpleasant symptoms as a result.

Trying to describe a complicated thing with one word is a bit unrealistic imo, unless you make a new one up. Once you’ve worked out the word You may need a time machine though to build the new word into popular usage ..try the 11th century first and see if it sticks by say the 1800’s and you may have a chance?

I propose my new word diabolisick.

I haven’t worked out whether it’s an adjective noun or verb though or it’s singular and plural useage.

This illness is a load of diabolisick?

Or I’ve been diagnosed with ME the hallmark of which is severe symptoms of diabolisick

 

You are right. We are trying to find words for something that other people have no concept of. It is all analogies trying to relate their experience to ours. Yet it is almost impossible because what we experience is not in the normal run of things.

When my husband had a bad flu we went shopping when he was not really recovered. He did fine for a while then all his energy drained at once. He realised he was experiencing what happens to me over and over every day. I hope to post this to the forum, but lots of times I get so far but have no energy to finish so just close the page.

Finding a baseline is also a back to front concept of what we have. Exceeding our anaerobic threshold may not be an entirely accurate way of describing things but it is the right way round. Ceiling is a better word from that point of view because what we have is an ending not a beginning.

Though calling it a ceiling implies we can't go over and we can. One of the things that no one understands is that we can slip beyond what is good for us fairly easily. Finding a good limit and STOPPING there is something I still struggle with after decades of illness.

 

Are there other phrases from the BPS model that we need to redefine?

 

I think there is an unavoidable element of brinkmanship in good pacing.

 

I would be rubbish at it - I could never resist a double dare

 

I double dare you to (resist a double dare).

 

Ok, so I’ve read some of these posts and am very confused, please can people clarify?

I’m working with a physio at the moment. She is very nice. it’s an organisation that has been helping people with M.E for a while.

However - she definitely is working with definitions of baseline. And people here are saying baseline is hard to find / not a good thing. She has said to me to break my day up so that I have 4 “rest” periods a day which should not be interrupted. I find that really helps me although it is very hard to stick to that and if my anxiety is high which is realistically nearly every day, I am unable to always do that.

However the other advice is to only do 50% of what I can do. I wasn’t sure what that meant, but they clarified that meant to only do things that don’t cause symptoms. Unfortunately every thing I do cause symptoms - even eating lying down in bed. So I’m still quite confused. Also advices to increase what I’m doing by 10% every week. Eg sitting up im only able to do that for 1 minute a day.

And to do the same things every day consistently.

But trying to increase things does put stress on me sometimes as does trying to do the same things every day. As it’s a lot to think about . And also Because some days I feel very unwell and can’t sit up and I push myself to sit up on those days which makes me feel a bit more unwell. And I can’t tell which days that will be until I actually try and then I start to feel ill. And it increases symptoms. But I do make progress sometimes but then I can’t sustain it.

I’m honestly constantly confused about what to do.

So should I be thinking more in terms of an activity ceiling?

But then how do increase my activity? I do not want to be in bed forever it’s already so hard to bear.

my ceiling consists of just being taken to toilet in manual wheelchair a few times a day. This is very hard as well. And rest of the time bedbound.