I think this is the only possible way forward. Their clinics seem entirely compromised to me. I don't think compromise is possible with people ideologically opposed to the foundational aspects of your illness.
I have a follow up with the local MECFS team tomorrow and I predict just being offered an online group course in fatigue management again. The standard of care BPS provide is completely unacceptable.
Agreed and with this type the fight never ends which is the fallacy those naive thinking compromises will be a good short term way forward seem to not learn the lesson in
To the point you end up thinking it’s not that those people are naive it’s just that they don’t actually agree with your side /disagree with them as much as they claim because it’s so obvious that it’s counterproductive at some point.
So there’s no compromise that will ever be struck as it will keep being sucked further to their side and no benefit from talking to them as it will be used to pretend it’s a fight. So also any third party pretending you should engage with them is by nature knowingly playing games and being dusingenuous too because unless they are offering a significant change in power dynamics to keep them in line themselves they are stitching the more vulnerable up to waste their energy and have their actions twisted.
Even if something bearable was struck as a detente then this type will deliberately then start chipping away at that , and that’s fact of this type and how they think and work and are not ‘guess’ or me thinking that - I’m so used to living in this world that I’m puzzled by the people who gaslight me that there’s ever been anything any different because there has never been a situation and I’ve witnessed thousands in different contexts where it ends any differently.
Unless you put a lid on these people and as soon as they see they are with people giving leeway and who show their hand that they ‘don’t want an argument’ then those people have shown them their weak spot and threaten arguments forevermore to keep getting more of what they want. So by then being that way they end up putting everyone else into more fights and a life of constant unreliability because they’ve said they aren’t holding that to account.
What does need to be done is keep whatever they do or say publicly and make sure they know whatever they do can be observed and is well shown up and documented so the fake narratives no longer work or apply as they appeal to bystanders to take their side or ignore. and no one breaking the seal by having secret interactions thinking they are being clever and doing a favour for those they are actually undermining due to their hubris.
A major tactical used by bps is to appeal to that hubris/you are like them (so I’m sure talking to you will be different because the problem was all those other pwme over the years ‘but you seem more grown up’) and divide and conquer. These newbies need to realise it’s like schoolboys ‘negging’ girls as it’s actually been the bps behind how badly they’ve been treated and their reputation trashed by stigma suddenly by this label (not ‘the suck people who are that sick because they’ve not tried hard enough in the right things but just waste their energy whinging about evil bacme instead’) to leave them feeling vulnerable to a pat on head from a crocodile smiling manipulator when said manipulator waltzing in and tries to give them the ego relief they need of having an ounce of respect being dangled fairly in front of them to entice them into undermining everyone else. And realise it’s a mess and never worked due to both the personality type of bps we got dumped under and all these allies who got ‘worked/played’ over and over as that same trick of pretending it’s not bacme that’s the issue leads fresh blood into repeating the mistake dozens before did.
Hence why documenting in ways that makes the M.O.s clear and readable if someone who doesn’t know s4me or have much time googled x or y is really important. So people can see the repeating patterns in full sequence and then comments are at the end (not interrupting) and other incidences are linked so it’s also clear it’s not a one off or made up.
Which is hard it seems in this varied landscape we have for me//cfs and because they are quite sneaky and lots pretend to be one thing to get in the door before showing their hand etc. Plus also sometimes I guess there are unavoidable things people get stitched up with eg like all patients getting coerced by their individual vulnerabilities into giving feedback that such props use to tell themselves they are doing good.
My gut feeling is we very much as a focus need to add to the list being more smart about how we can stem the flow of newer patients getting conned into supporting the gaslighters. And much smarter at thinking how we stop them being coerced into the next round of minions for PPAi and signing off another few decades of times and repeat under a rebrand. I’ve met these newbies and it’s scary how they fall for the ‘we should listen to those who recovered’ toxic bullshit and are brainwashed around a tear in which I assume is the snarky clinic staff and online gurus combined with work and home.
They aren’t like that in the early days when reasonably everyone assumes there will be healthcare instead of a different dystopian system at the end of the diagnosis.
So there is a specific window where we need to be pre-bunking the con artist tactics (they use ‘the haters will say we weren’t really ill’ and pretend it’s the others being not nice whilst what they are actually saying is the horrid stuff but somehow a lot of people fall for that veiling, and listen to the person playing victim who is trying to sell them something over the really ill person who is just trying to stop their life being as wrecked but are being taught ‘those people are downers to me the poor money spinner’) and ‘you’ll feel better if you just learn to reduce stress’ hidden stuff where they aren’t being told when they don’t feel better they will get blamed and that’s all about stopping them accessing acknowledgment of their illness when it makes them really disabled by having a fake treatment that if it fails the patient must just try again etc.
But it’s not a simple message to get thru both wuickly and in a way that won’t shock them or put them off. Yet we need to start working on doing it better.
We’ve all been there when we were out in the world and not wanting the smear of ‘being like them’ and those sorts of tricks used to get people to prove themselves to well people and not be conspiracy theorists as danglers to coerce people into pretending that it’s ok there is no research and treating an illness with self-motivation and/or brutality ie ‘behavioural psychology’ thru punishment and psychological reward
