The proliferation of discussions and scholarship on FND always leaves me beyond despondent. It seems like such an inevitable way to subvert recent progress in untethering ME from the BPS model. On one hand, many of those involved in perpetuating FND nonsense were also instrumental in ME research. Thus, they can’t just say, well ME was really FND all along. On the other hand, they could, and likely will, argue that ME patients suffer from comirbid FND. This puts as right back at a CBT/GET paradigm.
There also seems to be a small coterie of FND patients who find the diagnosis validating, rendering any critiques of the framework deeply offensive. The rhetoric confronting dissidents is chillingly familiar: militants, stigmatizing, conspiratorial, anti-science campaigners, vocal minority, harassers, etc. These hackneyed tropes are brandished at the slightest sign of criticism, creating a landscape where legitimate substantive discourse is impossible. It also transfers the eye of the audience from the arguments to the individuals articulating them. We’ve seen this all before. I just haven’t seen much of it from patient advocates, but FND seems to have some intractable proponents.
Spot on. It's dumping a heterogenous load of ill people into a bucket and instigating that research must be lowest-common denominator leaving very few things that would ever actually work if you were doing real research, but a nice funding con for those who claim tiny effects across larger numbers. Imagine if historically we'd had 'bad foot clinics' and all research couldn't type the different ways a foot could be bad because some research claimed a 8% placebo reduction in stress from talking therapy so nowhere else got funded. And the world defended that like black was white pumping money into that instead of diabetes or plantar or orthopedic possibilities.
It does seem like a well-worn pattern, not just used in medicine these days. Someone should be diagramming out this model and publishing papers on it. Because its a technique/issue used across institutions (all those who aren't 'a certain type' can sense it even if they refuse to open their eyes lest they have to get involved), and is the real phenomena in itself. It is certain a 'psychology model' even if it is of the physicians and system itself rather than the patients it is perfectly valid in any other part of that subject except clinical - so why don't they chart the organisational as much as the rest?
I think with 'CFS' the vast majority of people knew they'd been chucked in a bucket and when the treatment didn't work or make sense assumed that the issue was lack of investigation because they had something else. They were in positions where whatever their level of debility the bandwidth they were left with (e.g. mild people with no leeway so basically having to do normal people obligations with 70% of the energy and so on).
The NICE guidelines false belief and 'exercise avoidance anxiety' nonsense was slyly hidden. Those around them weren't interested and getting 'involved' with groups was pointless when you think the issue is that you don't have the illness, and you've less spare than anyone to get 'het up' about campaigns.
I find it interesting if some are actually genuinely happy with their diagnosis of FND this time, I don't know what the symptoms are for these individuals and what support/adjustments they are getting (which might make it more understandable). Their relief might come from thinking that this at least gives them something to say it is 'real' and stops the mickey-taking, something to tell work or school to stop the impending crisis there. The nonsense will come out later. And when they realise the intentions involved with it aren't to get to the bottom of the issue.
I do know some kid who was getting bullied where the school put them with a counsellor for anxiety instead of stopping the bullies (doing so might apparently have affected their mental health). To me that is soft-soak medicalisation of the person who was just wrong place wrong time suffering a situation that they should rightly flag, instead of addressing the actual cause (and people with the mental health or at least behavioural issues).
But in a stressful situation if you have to just label yourself to get some relief because under that they will give you a break from bullies or there is nothing and you are promised 'it's just for this' it is astounding how many accept it for themselves or their children. The pressure from everyone is for that bullied person to accept it as it 'solves the issue for everyone' (without them having to do what they don't want to do and step in). It becomes policy then actually believed as an ideology. But yes that could have big impacts further down the line but only for that individual (hence why everyone else so keen for the short-term fix).
I mention this as it seems to be part of 'the con' to trick people initially (or at least split the field by conning some who are given the diagnosis to 'be the god patient and trust the doctor's suggestion), via lack of other options and tiny upside with hidden downside. By that time - when they realise what they've had promised would work doesn't then the power has taken hold. And they've got a label that takes away their voice because these people start making personality or whatnot claims.
But really even if they did know what is anyone allowed to do (and get it twisted against them when they try) - it isn't the fault of the patients, it just shouldn't be allowed to happen in the first place and those who aren't ill and have the benefit of the full picture should know all of this and be standing up against it. Currently you only anticipate that outcome if you've seen it before - because of the PR about the health sector 'wanting to help people', and the peer pressure from lazy bystanders.
A real model of this repetitive issue should be being published so it stops being a conversation about a specific illness or patient, but is 'ah they've done it again, we've got a lump and dump model issue'. And maybe it is time for significant changes in oversight and internal affairs type organisations to be set up looking out for these sorts of things.
