A couple-based psychological intervention for chronic fatigue syndrome [In progress, April 2018]

For some, the concentration required for engagement with any form of talking therapy risks exacerbating things.

 

@Woolie I hear you. I wouldn't have high hopes for this particular study for the reasons you pointed out. I'm a little more bullish on CBT than you are as I think it can be a pretty pragmatic and common-sensical tool for coping with nasty illnesses or addressing 'mental health' troubles... when used wisely (whatever that means. Part of that would be non-arrogantly, non-dogmatically). I guess part of the issue is that what constitutes 'CBT' is another order of magnitude more addled even that what constitutes 'ME/CFS'. All that said, I'm confident in saying that CBT has no application in treating ME/CFS per se so any study hoping to show that it can do so at this point is just chasing ghosts.

 

Yes, I agree, therapy can be helpful. My only problem is with therapy that adheres to the principles of CBT specifically.

(exception to this is entirely behaviourally-oriented CBT e.g. graded exposure treatment for phobias).

I just hear a lot of PwMEs talk about how "nice" and "helpful" CBT is when its applied to people with cancer and all those other diseases. Sort of like a nice supportive chat. No! CBT assumes the cancer patients have developed all sorts of false and maladaptive beliefs about their illness and are overly dwelling on them (ruminating, worrying), they need to be confronted about the dysfunctionality of these beliefs and they need to be corrected.

I don't believe that anybody's reactions to cancer or any illness should be pathologised, especially not by a healthy young therapist who has no idea what real suffering is! They should be understood, and accepted, and patient and therapist should work together collaboratively to improve the person's quality of life. But CBT is explicitly not about understanding and accepting, its about correcting.

Of course, many psychotherapists don't do real CBT. They instinctively know its a bit, well, ideologically dodgy. But then in that case, its not CBT, its something else they're doing. So we must not call it CBT.

To me, therapy that strictly adheres to the principles of thought correction that are at the heart of CBT is potentially harmful. It has the danger of making the person feel like a failure if they can't stop those negative thoughts.

 

I think you're right, @Woolie . It strikes me that CBT and other psychosocial interventions are being pushed so aggressively and accusatorially in the case of ME/CFS (as I've certainly experienced), cancer-fatigue, etc.. Presupposing particularly 'maladaptive' thought patterns in these groups based on existing illness or disability is frank prejudice.
As @Sean points out, everybody is full of incorrect beliefs, unhelpful thought patterns; everybody has gone through some sort of trauma, etc., so why pick on only certain groups of people? Maybe everybody should agree to CBT, or else they clearly are maladaptively apathetic about their life, and are, it must be added, guilty of stigmatizing and trivializing mental health issues

I've had this thought. Specifically, pathologizing despair, anger, frustration is ludicrous. If somebody had horrible cancer, or ME/CFS, or whatever, and didn't experience these things, that's when I would get really worried about their mental health.

I hesitate to speak in these kinds of terms having read too many highly-wrought pieces sanctimonious garbage in politics classes, but it really seems as if some quarters have or are attempting to weaponize CBT against certain groups of people with chronic illness or disability.

But I still think there's value in the CBT paradigm . I think it can provide a helpful lens for dealing with some bad things. I've personally seen some seriously maladaptive thought-behavior patterns that produced profound distress. If a person recognizes that this is going on and feels that they need help to deal with it, CBT, or counseling that uses the CBT lens, should be available to support them. But nobody should be railroaded into doing it or made to feel like their a blight upon the land if they choose not to or it doesn't help them.

 

I prefer some of the newer techniques like ACT (acceptance and commitment therapy). It is pretty much how it sounds. It starts with the premise that your thoughts and feelings are fundamentally okay, its not wrong to think/feel that way, and how can we intervene to help move you to a better place?

I also have my doubts about the theory underlying some specific CBT treatment models. Like the idea that depression is caused by negative thoughts (I suspect negative thoughts are the product, and the cause is something far more basic, like your body or current circumstances).

 

Yes, back in the 602 ad 70s, in CBT's heyday, Aaron Beck proposed that people with depression had incorrect, negative beliefs about themselves and their future prospects. But then in the 80s, we discovered that depressed people actually rate their competence and future prospects more realistically than non-depressed people! So then they had to change that from "false" beliefs to "maladaptive" beliefs.

 

This concept sounds somewhat similar to something done in Alcoholics Anonymous where people known as "sponsors" help to keep recovering alcoholics on the right track.

The difference would be that, unlike the healthy member of a couple, AA sponsors have themselves followed a program of recovery with success.

They should do a study on this. You'd just need to find some "sponsors" who'd fully recovered from bone fide ME/CFS using CBT...

Oh, wait...

 

Yes, its outrageous what you see in some of this Health Psychology work. Such negative judgements: catastrophic thinking enhances perceived pain in RA, excessive rumination is the cause the fatigue in lupus, and so on.

I think PwMEs imagine that the psycs are fully on board with these other diseases, because those diseases have an agreed organic basis. But they still make as many negative characterisations as they can possibly get away with.

 

Those people are picked who aren't "performers" (in German Leistungsträger), i.e. people who - no matter why - don't contribute in any way to BIP and who ask for social benefits. This would include criminals.

You can be the biggest weirdo with the most questionable way of thinking, if you earn money everything's fine.

 

I imagine that a lot of people who go into psychiatry or psychotherapy are either (1) exceptionally full of themselves and grossly overestimate the luminosity of their own insights and perceptions while devaluing those of others which contradict them; and/or (2) have some pie-in-the-sky notions of using esoteric techniques based on ingenious 'theory' to benevolently release clients from webs of suffering they entrap themselves in. Way too much Kool-aid drinking. One can see how this would block access to common sense and lead to a certain 'adventurism'.

(I'm sure many go into these fields with a genuine desire to help people as best they can and approach their work with respect and humility, as well.)

It seems that anything chronic that involves substantial fatigue or pain is a highly attractive beachhead for this psychiatric adventurism.

 

If you have seen someone experience psychosis, or struggle with schizophrenia, psychiatric intervention saves lives.
Acute intervention is difficult, but undoubtedly makes a huge difference.

The issue is the assumption that if there is no biomarker for a condition it is psychiatric.
" Lived experience" seems to have little translation into meaningful observation or empathy.

Statistical spin and studies that are frankly embarrassing scientifically, question both the veracity and underlying ethics of both these sciences.

As biomedical science continues to chip away at the underlying mechanisms for many psychiatric conditions, psychiatry' s boundaries are being reduced : in the interim , this can be a very dangerous place.

 

This is what makes me wonder: there is a huge demand for more services and better treatments and care for people with serious mental health issues. There is a huge amount of good that could be done instead of poaching illnesses from other disciplines, purely (or so it often seems) to inflict the same barriers on these newly acquired patients.

 

Agreed.

There is a serious need for crisis care in my area, they are always mentioning that the places are taken (all 6 of them). It seems beyond the planners capacity to work out that you should oversupply in order to cope with periods of increased demand. Children are being sent 100's of miles away for treatment and forced to reduce contact with friends and family at a time when they need them the most.

Children affected by the Manchester bombings last year are still without treatment!

They could leave us alone and go and do some good.

 

I imagine the options are carefully calculated based on an aptitude to politics with a superego that genuinely doesn’t get that they aren’t special. So let’s have a look at their options:

A. Work in a hospital ...uhhh. No way that sounds like too much work and I don’t get properly paid for ages

B. Work as a GP...well I could get to lord it over patients, but the hours are getting increasingly antisocial and I would have to work alongside others that might dilute the adoration I get. It also doesn’t appeal to my sense of self worth..too much suppositories and old people to deal with

C. Research...hmm yes that has potential but doesn’t it pay pretty poorly until you’ve progressed to a certain level and proved yourself as proficient in your job?

D. Psychiatry ...ahh yes that was a right doss at college ...the lectures were so easy and I can just make stuff up and no one can challenge it...this really has potential...ahh but there are those grubby patients to deal with ...hmmm

E. Psychiatric research ...yes this has potential, minimal contact with the grubby masses and I can still lord it over my research peers and fast track my career to be an expert in my field...now let’s make some stuff up and get a few papers published...oh and I really do need to give a few of my networking mates a call to see if I can grease my way up some other poles.

 

Merged thread

There is a study currently recruiting for treatment for ME aimed at sufferers and their partners, to train the partners to "support" the PWME through a treatment consisting of CBT and GET.
I believe that the chances for abuse to come of this "treatment" are frighteningly high. The couple will be told that the condition can be improved or cured by exercise and a change in attitude, which will very easily turn into bullying, blame if there isn't a recovery and sufferers being made more unwell because they've been pushed to exceed their limits.
Add to that a home environment which will become that of pressure and conflict.
I

https://bepartofresearch.nihr.ac.uk/trial-details/trial-detail?trialId=12640&location=&distance=

 

Another one. There are dozens of the exact same. Let's do it some more!

Very weak experimental design, not a proper thing other than just a psychological experiment, but also completely inaplicable:

Great way to break up already strained relationships, though! Good old insult to injury, this is just good medicine, yes it is.

Looks like they have difficulty recruiting, they pushed back dates twice already.

There really needs some basic economics to health care, this is frankly ridiculous. They are trying to sell something nobody wants to buy and can't get the message that they have nothing of value to offer. When nobody wants stuff you are selling for free, take a damn hint.