Is it useful to compare CBT in SLE and ME/CFS?

My point is that whatever the style of therapy, or name, doesn’t matter. it’s how it’s used.

If I were to paint a car with gloss, it would give a terrible finish. It’s not the paint’s fault, it’s mine for trying to use it where it won’t apply, and not using the right type of paint. “Gloss Paint” wouldn’t be at fault.

I don’t think CBT is a clear enough label to
-undertake investigation
-compare illnesses

We need subsets of CBT to be defined for it to be workable.

 

Not in ME/CFS or SLE, though, surely? That'd be like trying to work out what sort of paint works best on trees. It might be interesting to see what happens, but as trees don't need painting, it's a waste of time and resources. Worse still, it might harm the trees.

You'd research your paint on surfaces that need coating—people who need or want CBT, in other words. People with ME/CFS are only at risk of harm, by being subjected to a treatment that costs them significant effort but has no realistic prospect of improving their illness.

What's behind my concern is that it seems possible mentally healthy people with ME/CFS are still being put through CBT without consent. If they aren't told it goes against national guidelines, has no evidence base and is almost certainly useless, they can't give consent. If that's right, it's scandalous.

 

I seem to remember that in my expert witness report for NICE I made the post that further use of CBT in ME/CFS was unethical, for that reason.

I cannot see any reason not to see CBT in the same light as homeopathy - a treatment defined by a bogus theory with no evidence of efficacy. (Except that it is worse because it implicitly involves deliberate brainwashing.)

 

But there is a very specific recommendation for CBT in the Nice 206 guideline which states it’s not curative and not to state that their beliefs are abnormal (I’m paraphrasing). So there is a form of CBT which could be useful. There are, as we know, forms which are harmful.

So to go back to the original query about comparing CBT in SLE to CBT in ME/CFS, I’d argue that “CBT” isn’t a specific enough label that you could make comparisons. You’d want to compare e.g “CBT with a firm brief that is requested by patient; not curative; beliefs about condition/pain are not “abnormal” etc.

Gloss paint vs Car paint is apples and oranges. We want to compare apples with apples.

 

If I’ve correctly understood other member’s description of the process, NICE’s recommendation of non-curative CBT is not based on evidence. As far as I know, there have been no studies on non-curative CBT for ME/CFS. It was seemingly a compromise to appease the BPS supporters.

 

Again though, it highlights the problem that CBT can mean all sorts of different things.
If there is quantitive data that a particular CBT has good out comes for SLE then it’s pointless comparing it with qualitative data for ME. So it literally may not be possible to compare such disparate items.

 

This

 

The thing is that is the areas problem that they’ve chosen not to fix. And by actively choosing non-transparency as being acceptable they’ve made their whole area harmful/unsafe.

and there is little benefit even if someone somehow did get the right thing for them in a way that wasn’t embedded to skirt their informed consent (which I think is a violation of your personal body just as much as any other body part?)

ie there is a situation where huge likelihood of harm and deceit and no likely gain anyway other than ‘to not be harsh to the person who still wanted to be a therapist in that exact job in that exact way’ - no one us stopping that therapist from going off and setting up something transparent where they tell people what it is they do and who snd what the chances of help for what are and and let either market forces or professional referrers asses ‘what’s right’.

tbf this also flags how conceptualisations like a ‘guideline’ fir an entirely unrelated condition really are not the place or appropriate for this type of stuff given how their sector works and proper psychology needs to involve someone who actually is qualified and regulated assessing only fir that and then a match with something that is oversighted as to whether it is 1. The right thing (and actually delivering what it claimed it did - we’ve a lot of switch and bait in cbt which to me is like letting an old drug be marketed as if ‘it’s ok it’s the new allowed drug’ ) and 2. Effective fir that person, based on looking at that person not nonsense claims of if it doesn’t work it’s their fault because they did crap research which allows them to immorally impose ‘it must eork’ (ps that was sliding never how scientific psychology said the diagnostic and treatment process should work for anything psychological).

the only place anyone who needed this extra support would have a chance of getting the right thing is certainly outside an me/cfs clinic therefore - I’m not sure the proper process of diagnose and match exists anymore as it hit unpicked by the same ideologists when they did iapt and turned into something which isn’t psychology or medicine . Maybe there is the odd niche left privately or with the odd old intact mental health set-up (but the iapt stuff defunded a lot of that and I assume there was similar change there).

Certainly you would hope that the type of people they might get in (at first) for a lupus or versus arthritis one would be non-gaslighters etc.

But for me/cfs they are deliberately using ‘pwetending they don’t understand when we speak’ to claim bananas is bananas and that just because someone like @Joan Crawford is developing ‘what do people who have been harmed by all this actually need’ then it’s all the same and it’s a free pass to not deprogrammed and clear out old staff and bad habits ‘cos wot, it’s based on CBT if I contrive that analogy enough’

thise claiming to be the experts playing dumb when someone tries to have a fair and sensible conversation with then is an issue that flags it’s unprofessional staff hiding behind it as a term indeed…


So currently comparing with other illnesses isn’t like-with-like on a lot of features (including I’d assume there is better triaging and matching - cfs people are still having their choice and ability for informed consent skirted), what but probably most importantly the ‘who’ and all the cultural values and honesty issues etc


I say ‘currently’ because those other illnesses would be naive to think if they don’t keep an incredibly tight control on things and it just gets outsourced or bps will likely barge their way in using the excuse of that very specific very regulated very only fir those who have comorbid need ‘result’ as an excuse for that same ‘no illness doesn’t have a psych component’ mission their businesses is on … and it has a very different set of rules etc

 

Personally Bob, I’d like someone to undo the GET&CBT type CBT that I got. Surely filling someone’s head with CBT nonsense is exactly the sort of thing some CBT can fix?

 

I agree - and what @Peter Trewhitt describes sounds like what in a just world would have always be accessible

plus from a justice point of view when the research changed and cdc threw out get and CBT and Uk finally updated via nice then it should have been a clear out time for deprogramming staff mindsets first and then moving them in elsewhere if they didn’t have the skill set for what is actually needed

and yes those harmed should have had things offered by safe people (who importantly anyone would assume would be a different person to the one who harmed them in the first place and so isn’t too keen to be honest about seeing the damage they did) that can help rectify exactly things like bad brainwashing

along of course with a ‘you broke it you fix it’ bare minimum of if someone forced you through get so you now can’t walk then making a wheelchair available to them would be a minimum sorry most normal people on the street would do. No one’s even asking for all the rest they’ve wrecked, just basic survival and decency.

what I’m saying is the fact that the industry isn’t outing these people - when they are the regulator placed to just supposed to have done this- but not even plugging the deliberate obfuscation that lets bad harmful brainwashing content charade under ‘informed’ that only covers the delivery method says that I would not suggest more of getting people to step into that ‘black box’ is a way to fix it.

I think Nice thought making it damn clear with a spirit as well as letter ‘not based on deconditioning or false beliefs’ would mean the deluded wouldn’t be so cruel and bold and/or deluded to just change the name of their insults and carry on.

Besides the clinic staff don’t seem to be particularly qualified people anyway - hence them bandying round calling themselves experts to hide it and inventing ‘BACME qualification’ (we might as well invent our own from s4me or firwardME then) and because most of them aren’t registered psych anything they aren’t even regulated ie SAFE to be doing any of it at all.

If it weren’t for whatever bits of the CBT industry suggesting you can have 2day training in some whatever of CBT and people think that not like teaching a monkey how to turn on the ignition and push the accelerator but nothing else including Highway Code and that it’s not a computer game so don’t run people over, and calling them qualified to chauffeur vulnerable people or drive a coach for school trips without having to clarify the specifics

I also don’t know if double CBT is going to help (reverse/undo) or harm further because if people have been taught to eg bigot themselves like a conversion course so then layering on top something that just focuses simplistically on kicking themselves for pushing their limits or bigoting themselves would be a double-whammy - I think it would need a careful expert to work out what actually IS the best medium and content to help someone unpick that toxic stuff.

And these people at best seem to do one-dynamic measures that are a quesionnaire asking if you bigot yourself less/differently, but aren't asking if being caught in that double-whammy of having had two lots of contradicting content has friend your brain and shot your mental health or ability to make any decisions or anything else that could be foreseeable if someone was a bit 'simplistic' because they were just a CBT-trained person and not actually even understanding how psychology works (nevermind combining in ME/CFS and all the rest) and/or if what they are doing is making the person in front of them iller overall (because they are only qualified in one thing, rather than having that one thing as one tool and their responsibility being to someone's actual mental health, not a sausage machine to one questionnaire answer).

It isn't like the opposite CBT just replacing 'stop/pace for go/stop being a wimp' is just going to work like an anti-venom without the risk of ... I don't know what because they aren't as consistent as they think and it isn't really very transparent even in what they say each one does as it is (I'm sure we'd get some message of intention/vision of 'helps you cope/changes your mindset', but what will they actually have in there as content?).

CBT isn’t the only method of undoing things and as you said if they want to they can be quite specifying in instruction if they want to do that work

I do know that WHO does that is the really important thing because the methods and intention of doing that job properly (in as far as trying to do the best for the patient outcome) rather than price reverse engineered ‘properly’ (just enough along to look like they’ve done research to sell it as ‘evidence-badged’ … 5% improvement for all don’t check fir harms etc)

 

As I see it CBT means something very specific indeed, and is much more like the person doing the painting than any any paint. It doesn't specify any paint. In a way it specifies a sort of non-painting akin to the Emperor's tailor.

It just means Conning Bullshit Therapy - a treatment deliberately based on a theory that doesn't even make sense wrapped up in very silly words to con people into thinking the deliverer has some understanding of what they are doing. Talking therapy is fine because it makes no such assumptions.

 

Of course you should be entitled to treatment—in a fair world, you'd be entitled to compensation—but it's not about ME/CFS. It's about undoing the effects of malpractice.

CBT should never have been allowed inside the building. No healthcare professional would assume poor mental health is so ubiquitous in asthma or diabetes or gout that the first-line treatment must be CBT, so why ME/CFS? The trial results make plain it was never a treatment, so we're left to conclude it was a scam. One so successful it established a culture of institutional gaslighting.

 

Strange how they can’t offer the CBT to reverse it, though. It’s actually ideal for some CBT.

 

I have always been bad at pacing, I had an almost pathological inability to leave things undone or admit I did not have the energy to take things on. Some years ago my GP practice had dedicated Clinical Psychology input with a young fairly new psychologist. Together, her in consultation with her clinical lead, we worked out a course of CBT aimed at me coming to terms with doing significantly less than I felt I ought to.

Obviously this n=1 is not evidence for anything specific other than the idea that CBT is possible with the client setting the goals and aimed at acknowledging ME/CFS as an activity limiting condition with no treatment options. This was at a time when I was experiencing some remission (my ME is of the relapsing remitting pattern, though with an overall ongoing deterioration).

In the short term I found this a very positive experience and significantly reduced the frequency of PEM. Longer term, after the course of CBT was completed, without realising it, I slipped into what was effectively pacing up bolstered by the then concurrent spontaneous improvement. Of course I hit an activity ceiling which resulted in a major relapse in my ME which has so far lasted well over a decade.

 

Yeah, it’s like they put chronic illness and pain in this weird in-between space—neither fully physical nor mental—then offer a one-size-fits-all treatment. Six weeks and done, as if that’s how recovery works. Feels more about the system’s convenience than actually helping people long-term.