As usual, none for the patients actually asked for this. They reported that being ill is mentally draining and disrupted, and they want to be believed.
The «professionals» went on about deconditioning and psychosocial factors causing ill health.
Indeed. BPS adds a disability on top. ANd it isn't 'a small extra' but I'd say I'm so many times more ill than I ever needed to be and lost most of my opportunities due to them and their misinformation vs if I'd just had ME/CFS and the world hadn't been influenced by them but just gave leeway based on how we describe pushing boundaries makes for deterioration long-term. That's a horrific, embarrassing record.
And of course they want to do what narcissists do in bad relationships in assuming their victim is mad and got it wrong so gaslighting them, but these people are saying - politely because they will already have learned how vicious the penalties are for talking normally with your voice on something they don't like (ie we are silenced) - is "please stop doing this... these are the consequences". And in return they are using it to say they need more of the harmful psychological techniques used not for 'mental health' but to get their way.
I've recently realised one of the issues that caused things to be so horrific for ME/CFS wasn't just that it was psychiatrists and/or bad psychologists that were allowed to obsessively control us, but that we got the dregs of those professions ie the quality of those that focused on us even within those areas. THe ones who believed in some very niche, actually often laughed at twenty years ago 'beliefs' in eg scientific psychology which was having to try and oversee what schools were nonsense and which had method and would ever look to get somewhere that was helpful rather than just prop up doing the same thing.
The above has just drawn in those who would have been normal, logical people doing actual helpful thigns for other segments by making sure they never get to see the full system/picture so they don't realise their 'little bit' isn't actually going to involve someone who will check they haven't been misdiagnosed and has any variety in what they are going to do, and those receiving them aren't told that eg GPs are just given a decision chart of 'could it be fatigue --> send to x to be dealt with' rather than have had all other things looked into by the time they end up there. And noone wants the accountability of opening their eyes to the real function they have and what their cog is actually doing.
Even in mental health you don't fix being bullied at work by only sending someone to a choir and anything good from said choir (when you don't have ME/CFS) is because you happened to meet a normal person who knows bps is bs and so finally gave the basic practical help to stop the bullying and validate the person. INdeed when psychology was proper and a science and not the IAPT ba****isation reversal then you were supposed to begin with the situation because 90% of those in a bad place are due to the situation... and no it
isn't theirs alone to fix. Noone is responsible to stop their own bully or unjust situation - that is supposed to be society and bystanders stopping it happenning.
There's the first nonsense propaganda changing black to white eerie message coming from this lot - the idea that those being targeted are causing that themselves, rather than there are bad people and situations who if not given boundaries or disapproval will seek out those who have support removed.
ANd there's the second bps reversal, removing the support system by deliberately spreading misinformation to ostracise people from support networks. WHen real psychology research also noted that for almost all the deterioration is almost always an indicator of how bad or good their support system are acting rather than them and so that needs to be put in place - but these people are deliberately spreading deconstruction of that, in fact a lot of CBT guides are about encouraging others to go do yoga or mindfulness guides to whom they have no relationship over spending time with people who might have spent 20yrs helping them out and need that connection in return.
And of course gerrymandering the relationship/support from any basic service any pwme might ever need to encounter so they can't exist because someone else has got there first with rumour-mongering then telling said services 'if they say anything different assume they are deluded'. So everytime someone just needs to set an appointment for equipment they have some old-fashioned person still being deliberately mis-taught, even though they were pulled up on it in the new guideline so know better and know the foreseeability that 'you'll lose function if you stop using it' nonsense and don't want to hear a word of it as a pwme exhausts themselves trying to explain their world and needs.
I struggle to think of anything more cruel, callous and/or deluded. It's a world of people taught to hold their hand up saying 'talk to the hand not the face' and having not just been given permission for it but told they aren't allowed to do any basic human stuff instead because
they will have to explain why they 'broke policy' to all those deluded people 'following the system'. And then
they , anyone who has such basic morals they try to give us what basic respect other equivalents might get, get to experience the overwhelming impossibility and energy drain and exhaustion of being sandbagged at every angle and your reputation being trashed behind your back for saying out loud what the eyes can see and is obvious instead of some fake narrative of 'oh yeah now I can see it isn't what I see with my eyes but with my beliefs' kind of game.
These people really think, I think that if we just got their therapy to understand noone really wants to put up with us and our whinging and we just have to understand everyone else doesn't want to see us when we are exhausted so we need to hide it or shove off and 'all will be better' that they've cured our illness. It's their same delusion underneath it all that magically this 'thing' they can't be arsed to 'acknowledge' will eventually go away if they refuse to acknowledge it like a mother with a child saying they grazed their knee stops crying if they say there is no damage and acts unworried.
And they really quite obviously many of those behind this want to spread this worrying attitude-problem into society for any illness and go 'transdiagnostic'. Anything they want to term as 'fatigue' just disappeared by the power not of their words or sophism but how far they will go in coercion and inappropriately using hierarchies and loopholes in systems as long as they can sell it upwards. What we have doesn't really even 'look like' 'fatigue' as they train it into people so the whole thing really is a strange brainwashing a la 1960s nonsense when people do stuff, often way too much in order to please others or achieve something then end up literally passed out and declining severely over the space of 6months.
Not like them feeling sluggish because they got a bit too into the junk food aisle and need to start being more discplined on their box set marathons - and they'll feel much better at work if they spend SUndays doing a walk with the family and add in a few nights after work doing some virtuous hobby instead of whatever. And what assuming that's what 'fatigue' from chemotherapy is like? And 'fatigue' from MS or RA when the meds aren't catching it or have worn off is like? I mean it's nice for
them to kid themselves that ill = their sluggishness-feeling or when they feel tired from having done all those lovely trips to zoos and parties with kids others are too unwell to have, but it is amoral and wrong that they are being given permission to pretend they can't learn and won't hear the two are different and need different thigns.
The issue with ME/CFS is that you don't just have a huge disability for example taking 50% of your capability and that being in such a way that it makes you unreliable vs society unless people are given the correct information because if we overdo it then we are out for x days and no colleagues or people around us will accept suddenly not being able to attend work or look after yourself for a week because they made you overdo it by an hour or two or the car broke down or that person thought they were being clever forcing you to walk an extra mile by secretly parking the car further away 'cos they thought it would make you fitter' (more likely they just wanted to kick the dog because they had a bad day but can't admit that part of their human nature to themselves).
The BPS then adds twice that level of disability on top. SO people who might have been able to have with support and the correct adaptations like a blue badge and shower aids and maybe a scooter have a limited social life and work part-time or complete studies with an understanding institution without getting worse are deliberately then being driven to severe where they can't even brush their teeth... just cos of the beliefs of some strange other people.
SO ME/CFS disability isn't just the illness but the BPS misinformation and incitement for people to undermine us and make life deliberately more inaccessible and for us to be targeted and certainly to be kept from any access to any healthcare for anything or support that others might get in any other services.
WHat people are talking about is that this wall of foot on neck that comes in from this system those interviewing are part of is genuinely to the extent people are shocked and probably spend the next ten years checking is really as real as it is because it is so unbelievable. Being deliberately prevaricated through systems that for other illness are made to have a pathway instead of deliberately waste energy in an opaque way so noone can call a decision out - and by doing so they spent ten times more resource than if they just gave the person the thing they needed is the worst bit.
