I have not been able to write a post about this, but there is generally not enough recognition that CBT for ME/CFS as practiced is actually psychological abuse. It is the opposite of learning to cope with your illness (which really needs to involve accepting being ill) which is presumably what is meant by "supportive" CBT. If this is not recognized and the differences between the approaches clearly delineated, patients will suffer. I was disappointed with the fuzziness and what I perceive to be quite a lax attitude on these points.
Is it really the case that proponents of what is actually psychological abuse can hide behind the idea that CBT is a monolith and there is no evidence to distinguish one type of practice from another? You can just do anything and call it "CBT". Where is the protection for patients?
Sorry if this has been covered.
For me that was actually the start of how I eventually rolled into looking at the roots of CBT for ME this year; I started out wanting to write an article about the clear similarities between abuse (especially coercive control and sadistic psychological abuse) and the BPS "treatment" approach and advise for/talk about for ME patients. Indeed it's an important topic to discuss.
proponents of CBT can hide behind not so much a monolith as a putty ball that can be squashed into whatever shape desired.
Not if ME patients (and anyone having the misfortune of being dragged up in the MUS net) and the people around them get a better understanding of the structure of CBT so they can discuss it concretely.
I want to elaborate on an answer I gave
here to
@Sly Saint (and a shorter one
here to
@strategist ).
There are two key things to tackle:
1)
the content of the CBT itself. The general goals and structure of ME's CBT are the same as CBT for other issues, so in that way there really is no "special" ME CBT in contrast to "normal" CBT. The difference lies in exactly
which beliefs and behaviour are thought to be dysfunctional and in need of correction.
As I explained
here and
here, those can probably be tackled with the NICE guideline: No more activity increase as a treatment -bye bye behaviour part, which means the cognitive part that is meant to keep the patient keeping up those increases despite symptoms falls away too, including "alternative explanations" to physical symptoms like calling ME or the notion that you are sick a "distortion of reality" .
2)
the purposefully misleading way that patients are approached and introduced into CBT for ME that is meant to manipulate patients into accepting psychiatric therapy and have them susceptible to the therapist later influencing them into what he/she wants them to do -to keep up and increase activity in spite of symptoms/relapse-, and to accept the abuse that is meant to get them to do it.
The goal was to deliver CBT to ME patients (and everything that could be claimed as MUS), and to that end a couple of modifications were purposefully written into the CBM treatment model of neurosis (an actual comparison was made with a fear of spiders- I kid you not) to tackle two problems:
- Patients weren't into getting psychiatrically treated for their obvious physical illness (a problem in selling the Product and claiming treatment authority and primacy)
- Patients "beliefs and behaviour" were "influenced" by contact with the health care system (doctors were taking patient's physical symptoms serious as indicating underlying physical illness, inconvenient in general, but especially when you're in the middle of trying to convince that same patient that there is no 'there' there; also connected to the first "problem")
To solve that they made two things a part of the therapy: with a range of methods manipulate patients (and surroundings) into thinking that they and their physical illness were taken seriously as such and that their experiences were accepted, removing as much of the psychiatry core from view as possible, and give patients the feeling that they were just trying something out at first (often referred to as a majorly important part of the setup), and isolate the patient from medical health care, propagate gatekeeper roles to medical care for executing CBT therapists and GP's and persuade physicians to join in the psychiatrist's approach, both individual scale and large scale.
I think this particular problem can be handled with education, primarily of patients, but ideally also of physicians, so they know what to look out for, what the red flags are and what things a CBT therapist that claims to work supportively should agree to*. (At the moment that whole "we work together with the patient"
is a flowery tablecloth over a crocodile.)
E.g. when a therapist for example says they take your symptoms seriously, the patient should ask if they also accept that they stem from physical illness. And during the CBT process it should be accepted that the patient sees physicians for their illness.
*(If the forum is interested I might do a post about it with a more elaborate discussion of all the tricks used/advised to therapists and physicians. I'm not doing so great atm, so I don't know if and how soon I can do it, but willing to see if I can manage it somewhere.)
The answer is always that CBT is tailored to the individual.
As I understand it, then yes, individual things might vary a bit, but it's all within the same framework, so that argument is invalid.
Wheter the "explanation" for an obvious relapse due to an (increase in) activity given "to explore as an alternative" is a stressful telephone call from mum, organising a move, making too much of it, performance anxiety or talking too much doesn't matter: the core issue is that the PENE/relapse as a result of the therapist-prescribed activity is denied and probably the patient's observation of it too.
(It's actually also part of the abuse mentioned earlier, as they basically work with what they get from the patient to use it against them with the same, single end goal in mind: to not have the patient attribute symptoms to activity while they do the graded programme.)
