What's a term like 'green-washing' for the rehabilitation approach to ME/CFS and similar diseases?

This topic has been split from
UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Ah. Yes. I was going more with slight of hand; 3 card monty

Don't look over here while we stop counting Long Covid and rename it anxiety - which is actually just "normal stresses of life" and " over medicalising" and absolutely don't look over here while we rename ME as FND and dead end people so we can stop them pursuing treatment or looking for actual answers and bypass the NICE guidelines we want to ignore, and then really don't look over here at this research that is pre-NICE but we are using to justify new-but-actually-the-same PROMS that ignores the lack of treatment and replaces with rehab, so you are all recovered and definitely don't look over here at our removal of the benefits system.

No disease
No treatment
No benefits
No problem - everyone back to work



How to make a pandemic and two diseases disappear

Edit to add: also ignoring diagnoses of SevereME of pwME in hospital and the NICE guidelines and sectioning then instead

 

Psychwashing

 

copied post

I think we need to be confirming our 'ask' and clarifying the picture so they don't just get to make it look like 'noise'. I think we need to be careful not to be kneejerk in just doing things. We don't go on social media just because we've got a slogan, but we get the picture showing what is happening and then describe it accurately as an issue with a slogan appropriate to that. And use it to draw light on looking at what they've done not on our being unhappy but them being able to muddy why (and us not all having the same simple, consistent answer to it).

I think what they've done here is recycled the issue through 'rehab' by using research done for 'CFS' to claim it works for the generic long term conditions

and then when the ME/CFS guidelines flagged that research was nonsense and PEM etc made them liable if they shoved people into psychologically injurous psycho-education saying we had false beliefs and GET programmes

they've just had rehab genericise the whole thing 'for all'

and 'all' being chronic illnesses for which 'there is no illness that doesn't benefit from exercise' is the ideology for. Forgetting to mention that idea came from dodgy research into CFS in the first place.

I think we need to drop the generic use of terms with psych, except where it is absolutely specific and appropriate / be careful with that one. Even though I absolute agree with your definition you've posted and it being relevant I think the chosen wording needs to be better. ANd because on this occasion I think linking it to the tactics used in greenwashing puts it 100% on the 'doer' (like big companies who invest in greener companies to front something looking greener) and not making it about 'maybe there is a bit of mental health causing it' type debate.

I think the crookery is better pointed out by making comparisons to the same tactics used by other industries to hide the same old 'toxic waste' being rebranded, put under another company, and sent back out to the market 'looking clean'.

Rather than labelling it 'psych' and going through the same old-worn debate they want us to. I don't want to end up with the community trapping this into that same rut again.

So that the stuff that is 'plain sight' and really obvious for laypersons to understand as 'scandal' without having to question the victims as deserving or not, and our mental health doesn't get used as the only topic of debate instead of the same old switch and bait

And Because it is behavioural (the ideology and the dodgy treatments). Always was. They just used the 'psych' aspect as a weapon. Let's not give them that one for free this time.

We need to be so much more precise when we do mention psychology.

 

Ok it was only off the top of my head.

 

I think the problem is actually:

People-washing

Like greenwashing, which is supposed to be green but is the opposite, people-washing is supposed to be about people but is the opposite. It is about fantasies held by healthcare professionals that they use to justify making a living. These fantasies are about 'putting people right' yet they can lead to the opposite. I am afraid that PROMS are largely designed to assess how well people-washed people are.

 

Psychwashing however is much more catchy, and delivers the clear implication that everything is now being washed in their psych approach.

Frankly it’s not just ME but the whole medical profession that is being psychwashed.

 

I think Psychwashing works, but how about Healthwashing?

I say this because of Sunak’s plan with sick notes, and it also reminds me of working, being referred to Counselling/Employee Assistance Programme.
As in “well we have done our bit to support you by giving you this, so now it’s a “you” problem”. It reminds me of friends at breaking point being offered free “mindfulness” workshops they “had” to attend at work, meaning they lost an hour of getting actual work done and had to stay late due to attending a “stress-busting” session.

I think we could find a lot of this sort of “we’ve provided the treatment, and most patients benefited” PROMS type nonsense outside of ME and LC.

 

I agree

however my issue is trying to tackle and highlight what has gone on with no change to what us being offered vs old guideline trying to be hidden fir me/cfs

and I worry that whilst that might be a side hashtag they will cherrypick it to just distract a valid issue into the same debate we always have and this time it’s not even me/cfs specific.

I think we need a catchy term that communicates that potentially the ‘new offering’ is the old offering just ‘washed through putting it under rehab’ and using something confirmed as not working fir me/cfs under the excuse ‘it’s just generic and used fir all chronic illness’ when the evidence they used for said generic was actually the same/cfs stuff that has now been debunked

if we want the ‘new offering’ to be changed in a specific way then we probably would benefit from being able to identify that as ‘our ask’ so comms are precise. The worry is these people otherwise dismiss it all as noise under ‘they just don’t like psych’ when the issue is it’s the same treatment the guideline said both doesn’t work and had to be changed.

on this occasion they’ve ‘washed’ the same old treatment through ‘rehab’ (even though it’s likely the same people just under a dept with a different name)

psychwashing is happening obviously but it isn’t the specific issue I’m trying to flag. This isn’t ‘new’ , psych already ‘psychwsshed’ and everyone knows. This is more like when a company tries to sell a product that has a bad rep through a new pretend company with a ‘brand’ that makes it seem like it’s a ‘greener’ or better product when it’s actually the same thing etc

 

Indeed
Or Well-washing?
Or even Able-washing.
Fit notes instead of sick notes.
'Demedicalising' by insisting you try unnecessary treatments.
The irony needs to come in somewhere.

 

love that!

 

PROM-washing (noun)

The pretence of recording treatment outcomes, where there is no treatment and therefore no outcomes.

 

the challenge with 'well-washing' is that 'well' has 2 meanings, particularly once you use the term in the past tense...

So you could say something has been 'well-washed', but it can easily be taken to mean that its good & clean - ie that it has been washed very well (as in thoroughly rather than badly).

well = the opposite of healthy
but also
well = the opposite of badly, as in 'money well spent', or a 'well-cooked' turnip, or a well-done steak.

The challenge with psych-washing, is the risk of offense to those who have psych conditions, & the risk of the BPS crowd accusing anyone who says ME/CFS is 'not a psych condition' of the old chestnut of 'psych conditions are just as real & disabling' etc.

I liked able-washing as it chimes with able-ism & so lots of people will already have an idea that its a negative thing. Well washed can easily be taken to mean 'its nice & clean'.

 

I quite like well-washing. An alternative would be fit-washing.

Fit-washing has the advantage that it doesn’t necessarily imply that you are 100% well (who is?) just that you are well enough (ie fit) to do whatever it is that the fit-washer claims you should be doing.

[edit: changed washed to washing]

 

I like wishcare. In reference to wishcycling.

Because it's mostly about ordinary people doing ordinary acts that make zero real difference while the real problem, the companies manufacturing products that can't be recycled but pretend that they can, suck up giant amounts of profit for themselves, while the whole population not only has to pay for the harm today, but will have to pay for the whole cleanup later.

 

I guess it’s actually evidence-washing , but the issue is what they are trying to wash away is the fact that what they called evidence was called out as having its pants down for cfs so they washed it thru the generic rehab where you just need to call ‘orthodoxy and assume’ as pretend sophist evidence claims as if you aren’t making up stuff that happens to be exactly what harmed those same people

EDITED to add:

'invent' a new dept and association and pretend that it isn't the exact same people in it who are just trying yet again to pretend that they haven't spend the last decades coming up with nil and creating harm to the point where it was clear their orthodoxy and preferred job doesn't work, so they pretend by having a new name it's all 'new' or just 'common sense'. NOt that said stuff was tested and shown to be an issue and a big old edict said for them to stop.

Pretend to lose the body of work for the last few decades that was so poor it was very low quality in order you can claim more funding pretending the same people going at the same area with the same thing that harms is OK as long as you make sure the quality of work is even lower.

It is just a rebrand of the dangerous cloth-ears. Even worse, clearly the focus/lesson-learned by this area of physio (or is it all physio apart from eg physiosforme?) is for them to be even more dangerous and focus on 'how did we let any methodology in the door at all' and lobbying to this time be allowed to continue but not make the mistake of letting anything normal be measured regarding the impact of what they do.

And the fact they are doing this so fervently makes it clear that despite the callous indifference meaning they consciously bullied people to never come back and show them the harm they've done and refused to see when they did stand in front of them, I think that for those involved with this measure it shows there was/is intent. ANd full knowledge.

The absolute insistence of never measuring harms, which them becomes never measuring longer term or acknowledging real outcomes and disability caused by them, becoming increasingly sinister deconstruction of even cardinal symptoms and rewriting them.

Just so that they can keep hammering away at the same bodies they harmed and made disabled to make them even more so and pretend 'only their evidence on their terms counts'. And that can only be coerced peer-pressured scores on satisfaction with perceived threats for the wrong answers that involve breaching research regs because they mislead what they will be used for. And dodgy retrospectives being done on it.

And here is the thing: what have physios even got to do with ME/CFS anyway? All the history of it shows they never had a thing to offer for the condition itself, and that some of them have caused potentially huge disability. Along of course with the attitude issue of a profession, or section of it happy to take itself down the toilet standards-wise.

The obvious claim when you think of physiosforme is that those who do actually do science are checking whether a treatment harms, and that is where the 'professional' part is supposed to come from. SO they are better than those who haven't been taught to think critically and scientifically and have professional standards, licenses and responsibilities vs drafting a load of randoms to deliver a course to a script.

SO when they as a section of the profession are doing the very opposite regarding their target 'patients' one does need to be asking questions about this choice? And claims of not being culpable and foreseeing exactly what they are doing?

And the person at the top of this new 'rehab stuff' is quite capable of reading. Even if they want to disagree with it on the basis of what they want to do as a job it doesn't mean they haven't been trained to be capable of understanding exactly what the new guideline analysis said and warned. So an attitude of 'making sure measures are less robust' should be seen as an outrageous problem that comes with absolute personal liability - given anyone reading the guidelines and recent history must have read 'there is a safety risk here' and that is instead of saying 'so we need to monitor we are being safe' suggesting the important bit is making sure 'noone can monitor if it harms'?

Or am I confused?

How different is it to a CEO getting red flags that the brakes mightn't be working for certain cars from a company and instead of looking into it and doing a recall and changing the team/debrief on what went wrong, someone else has waltzed in offering to take it on as is and continue the same thing under a new 'brand' .... but this time making sure that they stop asking questions about whether the brakes failed, whether anyone was harmed due to this and particularly any follow-up after the first few weeks. In fact deconstruct 'braking' in your surveys to disappear it as a construct. And only measure whether those on the production line have a smart uniform and turn up on time and take a big old list of things about the drivers in case you need to scan it so that when they crash you can infer it was caused by their personality type? or maybe because they 'seem stressed' (because their brakes don't work) a piece of research suggesting that is the cause and measuring whether that fixes the brakes issue/proves there is no issue with the brakes by giving out mindfulness to a selected sample and saying 2 people 'liked it'.

 

I didn't even realise it's so local! But yes, very familiar from childhood onwards.