I have never had enough support to find a base line, unless someone could provide me with a cook house keeper, a valet, a chauffeur, a gardener and then a property manager to deal with all the staff.
In general at what ever level of impairment life will interfere with any attempt to establish long term stability.
yes and the very concept seems to exempt the possibility that eg within a day one cannot do all of their essential needs. EDIT: ie you have to 'plan/factor in causing PEM' just to do the things that eventually become more problematic if 'not done' and calculate the minimum 'do' before you get worse 'consequences' vs PEM
from. And do this for each 'task' you can cut out/down to a 'best you can' rather than 'PEM-free'.
In reality, it's a cross-your-fingers no unexpected visitor calls because you have to shower less than you need/would like
and worse situation and working out the lesser of evils compromises between different essential activities being stretched further and further (tooth brushing vs showering vs proper meal eating vs other key things) across longer time-accounting periods than those professions who tend to use the term 'baseline' could even imagine or work with. And the energy used for 'unexpected' knocks out other planned things. So even that is 'just theory' anyway.
Now that
is a problem because we've got a term that is both misleading in meaning,
and exclusionary to the part of the spectrum that
should be most important and given most care in any other medical condition. So the flaws in all of these things probably were just people being crap and lazy or kidding themselves it would help to start with 'something orthodox/already used for soemthing else' but the 'proper tailoring it to ensure it was applicable' never happened, but it has resulted in quite a divisive situation that led to the situation we have.
Which is where those who think they 'fix people' only see the milder and milder cases, because there is nothing to offer (at best) to those who even have mild but not that mild ME/CFS and more severe so they base their beliefs around self-fulfilling 'those satisfied seem to be the ones who attend regularly' and that sort of thing not noticing cart-before-horse because of their behavioural training. And almost noone understanding the more severe because even if they were well enough to try and articulate something much more complex and severe by that point vs milder, it is so opposite to the framework others have been primed with how is it going to get put into words that can be easily filled-in. And how is it going to be well-categorised so the specifics remain but the 'count' can be used of something?
I find the term divisive because immediately if someone 'doesn't have a baseline' they've apparently failed as a patient
and can't be slotted into the scale. Importantly for this, I think changing the term and ergo 'reframing what it is we are trying to encapsulate' could lead to more 'medically-related/disability-appropriate' meaningful as far as measures for research items. Is it 'function' we are looking at here for example, or 'overall packet of energy' or 'severity of payback'.
I get the sentiment when it is used by 'friendlies' or allies, but think it again needs a better 'does what it says on the tin' term that is both inclusive and accommodates what real life is likely to look like. But mostly it has to be a term that an illness would use, rather than a personal trainer or coach? Even when the question really perhaps relates to the layperson's term 'greater debility than a normal person would expect from the same activity' eg unable to move for a whole weekend after having a shower.
I get that we also want to accommodate for the cumulative impact, which is laudable, but I'm not sure enough people will have access to enough experience (given thresholds shift as well as situations) without almost quite precise instructions as a 'test' on this attempt. And that probably does need a panel carefully coming up with clever ways of articulating that (which mightn't
just be words in a question, but a diagram or something - we might need to actually be creative/think laterally here).
If we don't want all of these professionals to be assuming it's about setting us goals whilst offering no treatment to change the disability underneath, and we don't want to leave almost all patients egged-on to make themselves iller each year until they realised they've been misled this presumption of upward trajectory 'one day' which is so hard to drop (and a problem why I have a problem with this 'magical pacing sales pitch' sometimes), whilst not even offering any substantive change to their
situation is strange. And they forget that 'assertiveness' takes energy, even if we weren't being effectively briefed against, which might be hard to also include in a calculation (sometimes the 'doing the activity' is less loss than the 'fight' of saying no).
