edited as I'd mulched in another post I'd half done when I hit reply
thanks for sharing. it just flags to me the clash of old with new.
this is an aside (not for meeting) but there is the awkward internal community bit that the changes to new guideline, CDC and Workwell type stuff coming through have/should present vs 'the before'.
Putting aside the bio marker one-liner that drives me nuts whichever side says it (it does us no favours to reiterate as most illnesses don’t have a bio marker do they? You go to a specialist and they diagnose and monitor/treat you based on a range of tests etc) … and echoing the royal college of psychiatrists FOI letter … it means more of a focus on the concept of PEM/PESE (and deterioration from
cumulative overdoing, ie not 'spreading it out better' and 'being more moderate') being the paradigm for the illness.
I think as well there are probably some implicit things that need to be actually stated out loud within this that need to be therefore changed from before that become pretty fundamental to how things are set-up and structures/approaches for input:
- A medical based service would surely be focused on making sure it accommodates the most ill, and that almost needs to be prioritised. Yet history has been to conveniently focus on the least ill because it was
supply-led, and all the rest of the issues with what it believed. But there was a whole landscape around
that.
- This new paradigm therefore needs us to understand that 'cycle/journey/spectrum'.
Not 'just PEM/PESE'. But that in itself is a big difference for some (although I think what bps would like to sell of there being loads of people with 'CFS/ME' or what we might now term CF without PEM that will be left abandoned isn't true)
That some might only ever be mild, but most of us will at least have long crashes, many will have deteriorations or very long crashes that last years, over the space of decades there might be 'somewhat' significant fluctuation in level of disability but that also then the disability we experience also relates to the context/situation we are in (daily re: noise, thresholds being in our control, understanding, how easy life is like commutes, help, nice people around us).
- So whilst these things might affect and be relevant to all with the condition to know and have built-in, because different severities are like different stages of cancer, not like 'different cancers', and if you've only had it 2yrs currently the data you might be given on
anything to do with what affects it and prognosis is based on bad data from most places. We need to be respecting the experience of people who have been there for anyone to understand what ME/CFS actually is as that full spectrum illness, and also to understand what difficulties crop-up and circumstances collide that we might need particular help or understanding for.
- But it is very hard and inaccessible and a big ask for someone more severe, who might also be contributing on what it is like to be moderate for many years in different situations and what circumstances led to that deterioration (so others can avoid it). And it might be less simply than their take-aways assume.
- then you get lots of people who don't want to hear anything that isn't positive because they can't cope or whatever throwing that into a group dynamic.
But with another hand you get things like structures that aren't lowest common denominator to the needs of the illest being included, because that would mean orthodox processes and presumptions of 'fairness' (if you think like everyone votes for themselves) or 'ear/listening to understand' (if you think its about understanding the bigger picture because we all might be in any situation) being represented by structures based on normal humans without an energy limiting condition that works on the spectrum this does.
this is quite a change. In voice needed. In information and mapping needed. But how does that old landscape, manage to map over into the new
but I don’t know how charities work on funding and who they have to please and what (perhaps not well-fitting) boxes they have to tick
And then you think about obligations and how those tickboxes work vs those they 'serve' and what that is. Who was (did they attract), and then who are they looking to be 'their constituency' and on what basis ie is it fighting for seats round the table because it is seen as time/resources are zero-sum
and then translate that to writing information documents, and then things that are more supportive things like eg care plans which might recommend one thing or another or suggest something will help that people then need to campaign for
And I start to see how complex this all is, and think back to how useful it is to understand the landscape - ie who does and doesn't do what, and if different organisations are doing the same thing but represent different constituencies, have different stakeholders and different loud voices etc.
I think
@Sean has a strong point
edited to split for length
