Toward the emancipation of “medically unexplained” and energy-limiting conditions..., 2024, Hunt

There is something to be said about bringing up and getting therapists (and laypersons) to explore and admit to themselves where they might not want to ‘lose’ the feelings that power differential gives them. so that once it’s clear that is not justified it can be hard to let go of can be explained in terms that are about the therapist and not the victim.

I think the cognitive dissonance filling when the false beliefs was debunked for example with BACME has been to knee jerk another way the same relationship can be replicated and justified rather than appropriate soul searching and looking at ways to put respect back into the relationship.

I agree it starts from a project point of view with putting qualified and experienced patients in charge of design and info from the start (rather than feedback at end being limited to ‘non-critical’) . There is obviously a stage going on with professions before this to make them capable of doing their part in this.

I think the point about conditionality for benefits and a treatment that only doesn’t work if patient wasn’t good enough is important. It doesn’t make sense as an ide other than wishful thinking and has been so damaging to allow people to hold those views and allow themselves to be used as weapons over peoples survival .

agree on the destignatising materials and therapy but it goes further than that. We can’t have denial of peoples history they were put through just because those involved in it don’t want to see it/talk about it 'as it is' because it feels uncomfortable. As that harms all over again. And at some point there does have to be a locus of accountability and letting people have their truth even tho it’s uncomfortable fir those who caused those consequences- without accusations they are bad people for saying it is what it is.

it’s an uncomfortable and inappropriate situation that people damaged by something are expected to return to those same people for support with the damage they did.

EDIT: I have doubts that without someone stepping in in the early days that this even makes sense - can any of us, in practice actually manage to 'react well' when someone effectively is saying something that means we are to blame, and by well that needs to be far beyond normal counselling stuff, but if they are responsible it surely is like one of those carefully managed meetings between 'doer' and person living with consequences because the victim needs so much from said 'doer' that isn't also / replaceable with the role of what a psych normally would be which is 'independent'.

It becomes dangerous ie a new level when those people aren’t being required to all go through deprogramming and reprogramming ie a period of acknowledgment. Otherwise the victim is dealing with the therapists’ issues instead of being supported and the risk of the dangling carrot of the therapists old power and entitlements tempting them to say ‘they don’t know what they are talking about/it wasn’t really that that harmed them’ is just too huge.

surely it HAS to be oversighted by new people who won’t be tempted to take advantage and won’t feel insulted or take it personally because it wasn’t them doing it.

 

I shall take a look.

 

I think the language will stop a lot if people accessing it. However, a lay version in BACME, BABCP, BACP would have value.

Centring this around contested illnesses is I suspect not terribly helpful as they generally aren't. Or not until the psychosocial brigade decide to include a condition on a random list of MUS, PUPS, FND (add name du jour). In a way this, I think, gives power away to those that oppress, if you get my drift. By in some way going part way to agree the conditions are contested to some degree. Maybe I'm making too much of that point. I recall a robust discussion I had a decade ago with now retired research supervisor on this point....

Not got time to spend more on this today. I can come back.

As an aside, I and three psychologist colleagues are leading the development of a good practice guideline for psychologists working with pwME for the British Psychological Society (BPS). This includes a writing group of 16, including 2 non psychologists as experts by experience (EbEs). And many of the group of 16 psychologists are EBEs too. And several clinical leads from NHS services. To date no push back from psychosocial brigade, a few who are members of the BPS and are HCPC registered psychologists. It'll be out in 2024. We will cover a lot if these points in easier to access language.

 

Reading the quote above, I do see a huge overlap in misogynistic language from the dark sewers of the bro Internet about how everything they do about women is about 'protecting' them. It definitely shares the same roots of "I know what's best for you and will do everything in my power to control you".

As in I've been following the alt-right and other bigoted social media crowds for years, and they blend seamlessly on a social media feed along with the patronizing biopsychosocial attitudes. At their core it's the same politics of coercion and amplification of fake concerns.

And sometimes I see women caught in that politics complain about the misogyny, and the hostile reaction to it also reminds me of biopsychosocial bros. How they always claim to be all about helping us and simply know better.

Not that surprising. Bigotry is bigotry, whatever the excuses people give themselves to give way to their control fantasies. Whether they are random people or eminent MDs makes zero difference, the behavior and motivations the exact same: themselves. It's all about giving themselves more power to act out their delusions and their need to control others.

 

People should be careful when approaching lived experience with ideology, because it's easy to fall into behaviour of selfishly trying to impose your ideology on vulnerable people who have the "wrong beliefs", defining their experience for them, while claiming to be motivated by a desire to help.

 

I have not read the full paper but from the abstract & snippets Hutan posted it is clear that the author does not fully understand the history of neurasthenia. Throughout the history of the condition there are many indications that the diagnosis was given to underprivileged patients. There were certainly physicians who suggested it was associated with overwork in educated professionals, with "civilisation", with the American lifestyle, etc but there is also plenty of evidence of the diagnosis having been made in the working classes, in the institutionalised & otherwise underprivileged groups from its emergence. While Beard was talking about treating overworked businessmen one of the earliest reports of neurasthenia came from the superintendent of an asylum describing cases in the wives of small-scale farmers.

The relationship with feminism - well, I'd also point out that there have been a number of high-profile feminists who have denigrated pwME (or those who have lived with historical disputed illnesses) in the worst possible terms. In the debate/lectures with Showalter and SW at the Royal College of Physicians in 1998 she made him seem almost benevolent by comparison & her suggestion that doctors "firmly discredit" our illness undoubtedly fell on many influential ears. And just look at the feminist-centric biographies of people like Alice James and how she was described... unfortunately feminist thought is no bulwark against bigotry towards pwME.

The use of psychosomatic power and influence to further state or corporate objectives is certainly worthy of far deeper exploration - the intensity of psychosomaticians' efforts to discredit and undermine the patients associated with the Australian "RSI epidemic" (probably just a period of increased awareness of work-related injury & of ergonomics rather than an epidemic per se) of the 70s & 80s comes to mind here.

Despite rolling my eyes at the over-jargonified language I think it's worth adding to my ever-lengthening reading list...

 

This brings to mind the whole medical social category of ‘the malinger’.

A ‘malinger’ being someone who would have to do hard labour poorly paid or unpaid. Someone whose work was unpleasant or monotonous.

So while anyone could be called a malinger for avoiding work of any kind or have an episode of malingering ascribed to them the term is meant for the working classes paid and unpaid for the oppressed classes for allocation by the ruling and professional classes. Or perhaps for men for their wives.

The maligner is the rebel. The person who says no. I will not submit to this fate of punishing work for little reward. I will find a way out.

Or they are the enslaved person or the low paid exploited labourer who is made sick by the poverty of their living and working conditions and who their oppressors further punish for this sickness rather than consent to alleviate such suffering.

Finding it expedient to deny sickness born of oppression its existence. To blame instead the person whose body tells of its existence, for being despicable of character. For daring to report their pain and or failing to work through it to withstand all blows.

I am quite certain many upper class people use this term for each other not infrequently. I certainly heard this before. It tends to be said with a little tongue in cheek. Just as they might also refer to not having brush their hair that morning as ‘I looked like a homeless person’.

They will also use it against each other and their own children. As a form of discipline if they’re feeling mean and scornful. But it’s not meant for use against the future doctors and stockbrokers of the world. Not really and truly.

You might be a well connected upper class white man in your youthful, but not too youthful, age and have your life absolutely trashed by the attachment to your being of the labels ME CFS and never far behind in spirit or physical form, maligner.

That this terrible trap wasn’t constructed with you in mind will not necessarily be enough to save you from it. Got to sacrifice a few, to maintain status quo.

 

Another point to flag here is the idea that the real 'therapy/re-education/technique' often isn't the model on the piece of paper.

I'll use the example of behavioural psychology/therapy in its classic form (a lot of people also don't realise that one 'side' of CBT originated from the 'cognitive therapy' roots, where the other from a very different thing indeed which is behavioural therapy): basic punishment and rewards, and things like instrumental conditioning.

It's a pretty well-known cliche that in the world of mental health if you want to 'get out' then you have to 'act right' and 'tick the boxes', not 'heal'. ie the two can be mutually exclusive, there's a bit more going on in the situation.

I'm sure there are some situations where there is something good happening, but it needs to be flagged that at the bottom of lots of 'results' are things that are far more powerful to a situation than the sales pitch written on the piece of paper to the third party.

Anyway, whoever was doing therapy or the like under a system where all of the coercion underpinning everything for the old CFS treatment paradigm was prevalent wasn't doing anything 'voluntary' at all. And certainly not based on evidence where it was. And it also turned out to not be therapeutic either. They also need to understand that saying something didn't work came at life-changing penalties.

That's a significant admission that needs to happen.

It's really terrible when you think of what was contained in that, forced in by (perceived and real) threats. Literally like conversion courses and having to, in the most dualist sense possible, deny your own body's needs with your own eyes, pain receptors and brain. Because of other people's crazy beliefs forcing you through it can make your mind change your body, or because they think it's a mind issue and nothing was wrong in the first place so you have to also admit 'you've false beliefs'.

They all know how awful that is and how harmful it is, even if it was right, because none of them now proven wrong want to go through the process even of getting rid of what are their own real false beliefs. They need to imagine what it was like when it was directed as personal towards yourself instead of them having to do the equivalent of getting rid of bigotry to others, which really shouldn't need to be cuddled as tightly and isn't actually as vital to your own identity and functioning.

And as it worsens that to take responsibility for it as your own failing. What a perfect con to be harming people and stopping them complaining by imbuing a bit into that therapy making them think it's their own fault. That was taking advantage in the most unethical way possible.



This is really, truly, a MASSIVE scandal - I don't understand why given the history of past ones in psychology this particular one isn't getting that level of acknowledgement, because it skirts the huge issues of ethics, informed consent, harm, coercion and so on.

 

well this is well-timed?

Just came through via email from the ME Association: Help the British Psychological Society develop good practice guidelines for ME/CFS - The ME Association

 

This has reminded me of the conundrum regarding biopsychosocial and the BPS acronym we use here for it: meaning the psychosomatic people.

If the British Psychological Society (BPS) are something we are needing to talk about here - and I think it is relevant - then that dilemma regarding acronyms becomes quite important.

 

Perhaps someone with contacts could share with Sean O Neill , Sarah Boothby and George Monbiot ?

 

Unfortunate acronym.