On rereading it, this line sums up the core issue for me:
They're seeing the problem as 'patient does a bit more, feels tired/sore, gets anxious/discouraged, just needs a morale boost to carry on.' Rather than 'patient cleans the kitchen counters, then can't have a shower for the rest of the week because they can't stand up for more than a minute,' or 'patient has a remote GP appointment, then can't talk to their family for the rest of the day because the noise of voices is too painful.'
If BACME were able to make the experiment of reconceptualising 'experience of symptoms' as 'decrease in function', some of them might have a lightbulb moment.
Or just as common ‘patient is constantly ignoring those symptoms and pushing thru because they are in situations all the time with no choice due to this attitude that’s been set up for them for decades, leads to no life, no dignity and constantly increasing disability’
I think the PEM concept has been deliberately distorted in order that it can be misused. Very many of us already do just have to ignore and the like and it ends badly - they are trying to step away from the ‘step back to not get worse’ idea by making it sound more complicated than it is
And their whole inserting themselves is specifically about removing our autonomy to speak for our own bodies and not allow us to even choose which indignities we focus energy on over others (which is what the illness does to us) but instead force us to waste energy on things they with their misguided idea of how limited our lives are ‘shoulds’ so we get to do neither AND get worse.
Then on top of it have certain personality types suggesting the getting worse is a sign of our not managing ourselves rather than their overshadowing and by doing so making life even more impossible ie adding further disability with their Michael Winner they just need to calm down dear bs as ‘the cause’.
This as a document is the equivalent of removing wheelchair ramps and adding in stairs for wheelchair users. It’s adding disability by inciting the world to be more inaccessible to us and see us as pests when requiring adjustments because we are energy limited in how we do a phone call (prepping first, making sure people are seeking to understand and not just chatting for the sake etc) trying to time it for when we are less unwell etc into some sort of nonsense about ‘sensitive persons’ or fear.
They had four years to talk to people like us so they were for the first time not undermining us with slurs but getting across messages we needed others to understand but instead have chosen to rumour monger bs if someone reads this. So when we try and advocate for our needs we are now competing with back-briefing from this nonsense that undermines us and encourages people to think we are deluded and what we are saying is mad.
To me this at least tells me what those people think of us in their own delusions. Not much reading between the lines needed. It’s tropes strung together. To try and make them sound more convincing as if they aren’t just a bunch of tropes to others by putting a fake story behind it. It’s pretty outrageous as a state of affairs.
And shows that if there are some in bacme who did join because they were not on board with the misogynist nonsense but thought they needed to be part of it even if they agree it needed massive change, well if those exist in that group then they need to start working out a way forward now and the decks need to be cleared of those obsessed with this old fart coercion control-y stuff. It needs an overhaul. At least they’ve confirmed that the same old people whilst they are given the freedom and temptation ie lack of oversight to carry on with their same old how they think of patients and what they want to supply whether it works or not don’t have it in them to really change at all.
So this ‘we’ve changed’ crud is the main bit that needs to be highlighted is nonsense and gaslighting really. And utterly about invalidation and silencing of those who needed to bring up previous behaviour anyway, that they not only had the right to do , but were absolutely supposed to - because you can’t actually do the job without addressing and naming the problems to be addressed so that they understood it.
They might be behaviiurusts in belief (punishment and coercion forcing behaviour change whether that helps or harms or has anything to do with the issue) but as most of them aren’t qualified or licensed in psychology it’s no surprise they conveniently forget that for themselves the biggest predictor or future behaviour is past patterns of behaviour.
And the bulldozing just when it was supposed to be ‘come to Jesus moment’ for them has now been confirmed as the best response they are prepared to give. The change needed was to find those who wanted to be educated or don’t want to be uneducated and running on old delusions and inappropriate tropes and feelings towards patients and yet the attitude we’ve had back has been clear they find patients opening their mouths unacceptable. That shouldn’t be allowed for anyone for any patients not just me/cfs so I have big concerns about the choice that we shouldn’t be listened to and just a few sought out to say what they want to hear etc.
What a mess.
www.who.int
