Investigation into cognitive behavioural therapy for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, 2020, Clark

From: Dr. Marc-Alexander Fluks

 

This suggests that the active ingredient is a 'therapy room' - maybe the wallpaper.
So maybe not the cardigan? Good to disprove a theory though.

 

Well...which definition of CBT are we using today folks?

From

And

So supportive as opposed to directive CBT. I don't have an issue with that as it's understood that this is an optional, adjunct therapy and should never been seen as an effective stand alone therapy for ME patients.

Some ME patients will be too ill to engage with supportive CBT and this should not be seen as evidence that they are particularly in need of supportive CBT, rather it should serve to highlight the dire need for effective primary treatment.

Researchers and therapists should always make it very clear when they refer to CBT whether they mean supportive or directive.

 

Neither CBT nor psychotherapy are relevant to this and those problems exist precisely because the behavioral model removes the normal means by which this would happen. It also gives objectively bad and harmful advice of ignoring symptoms, which hinders proper adaptation, while misleading about the promise of a cure, which it is not.

Giving relevant and accurate advice in standard medical practice would have the same effect at a fraction of the cost and it's a trivial "benefit" anyway. It is simply not meaningful, it is literally the very bare minimum that is expected of standard health services that are denied to us and is deliberately sabotaged by the behavioral model.

The "shift in perspective" is meaningless speculative woo.

So the opposite of PACE, which is the cited evidence for this model. It is also what is explicitly not recommended by the PACE researchers. So the PACE/NICE model is both the evidence for this paradigm but also not used in practice. Because of course. Up is blue, West is a mammal and the whole universe is actually a pack of dirt in the corner of some room somewhere.

 

I 've heard of people who supportive CBT and found it helpful.

A friend and I were having what was rapidly becoming a heated argument re CBT. She is mild-moderately affected by it and was very pro CBT. It suddenly occurred to me to ask what she meant by CBT and what the therapist actually helped her with.

She covered coming to term with stopping work, possibly for the long term. Learning that she would need to stand up for herself and say no to people who thought she was well because she didn't look ill. How the change in her health and lifestyle might affect her relationship and discuss ways to handle that. Feelings of guilt and self worth in light of the loss of career and the effect on her sense of identity.....

All sounded very positive, helpful and a million miles from PACE. If that's what was on offer then that would be helpful to at least some people I'm sure.

Between directive and supportive CBT, plus the dumbed down IAPT version (CBT - lite?) , telephone CBT, internet CBT, CBT delivered by AI (coming soon no doubt) I'm not sure how anyone is supposed to know what the treatment is anymore.

 

But isn't CBT always directive when dealing with patients supposed bad thinking?

(and as a aside I had "CBT "for PTSD after a serious road traffic accident and it was really an exposure program so I know how the UK NHS calls everything CBT)

 

Literally none of which would be needed if medicine did not deny this disease and treat us with contempt. This is 100% on medicine that this is happening. No gaslighting and discrimination = no need to detraumatize from gaslighting and discrimination. This is being both the problem and a trivial peripheral solution that does not even affect the main issues. All this advice fits on a small pamphlet, there is no need for all those steps that go through insulting and gaslighting people, denying basic medical support.

There is additional support that may be needed by a few, once other basic needs are met, but they are generic, have nothing to do specifically with ME. Most of which has to do with stigma surrounding chronic illness in general and how little is understood, but again this is 100% the fault of medicine who themselves create this stigma by treating chronic illnesses as second class problems to every acute problem.

Much like beating the crap out of someone and giving them about $10 for their trouble. Of course the $10 "helps", but everyone would choose to not receive the beating and forego the trivial $10. Or even if it was $100 or $1000.

 

Allegedly, no.

Apparently, CBT can be used to help the patient adjust to new limitations imposed on them by an illness or what have you.

So, for example in the case of my pal, among other things she learned to recognize where she needed to say no and techniques to help her say no to other people who refused to acknowledge she was sick and expected her to be available to help on demand.

Whether this is, in fact, how supportive CBT is written up in the handbook? I don't know. It is certainly different from the directive CBT used by PACE and also for phobias.

I personally am not a fan as they've muddied the waters so much it's hard to know which CBT is which and if the therapist (if they were experienced enough gave counselling over and above the standard).

 

As I've said I'm not a fan of CBT for reasons already mentioned.

I don't deny the particular issues related to ME - unfortunately, I've lived them too.

However a number of my family members developed an extremely debilitating, chronic and incurable disease which is well known and recognised. There are some effective treatments, but the disease is progressive and not every treatment suits everyone. Even with treatment each if the relatives who developed it found their lives changed. No longer able to work, having to apply for benefits, pressure on relationships.

Support for someone adjusting to these huge life changes, for those who want or need it is no bad thing. As you say @rvallee the condition itself shouldn't be relevant, other than how the condition affects that individual.

As long as that is the aim of that support. My understanding is that CBT a la PACE corrupted and twisted that support and based it instead on the treatment of phobia or directive CBT.

 

I agree with the point being made that a designation of CBT by itself gives little information as to the actual nature of the intervention.

Presumably since CBT is generally accepted by the establishment to be 'known to be effective and safe', roughly, everybody wants to call their thing CBT so they can benefit from low scrutiny and the broad confirmation bias that 'CBT' works.


I would agree that accurate information and adequate support with basic needs would largely obviate formal psychotherapy. However we shouldn't discount the potential distressing and depressing nature of adjusting to a reduced life. Some people will want to see a counselor; some will get good advice, some will get bad advice, etc.

 

That sounds more like counselling, rather than CBT!

 

Imho, counsellors should not be giving advice.

They can share information, or share what others have found helpful in similar situations - but counsellors should not be putting themselves on a knowledge power pedestal - they should be facilitating (process) the client's choice (content) how to respond to any particular situation.

I tell counselling trainees that 'the client is the expert on the content, you are the expert on the process, don't confuse the two - if you find yourself trying to convince the client to do X, you've gone off the rails, you should be evoking from them what and why and how they want to change'.

I say this knowing full well many counsellors operate as advice givers.

 

I admit, that's what I thought but she was adamant it was CBT as offered a number of years ago by her local NHS.

Like most people here, I'm sure, I wouldn't judge someone from seeking the help they need. One of the problems with it who knows what might be offered when a patient goes to such an appointment.

I suspect that some CFS clinics have been providing counselling as needed while calling it CBT to keep within guidelines, while others may have been given directive CBT. So we have some patients arguing for more treatment not realizing that what they received was not the standard offering. Like my friend.

In some ways IAPT will at least make it clearer - it will be as advertised by the NHS, because the therapists won't have the qualifications or experience to offer anything else.

One of the reasons I have stuck my head above the parapet here is that, when it comes to previous treatments of CBT, not all of them will have been the harmful to us, directive CBT. Some sessions may have been very helpful to patients, so if we are just CBT bashing without clarifying, we may alienate some patients and turn them off involvement in our cause.

Also, there may be some therapists or psychologists who haven't previously been involved with ME, who haven't seen CBT used in the directive PACE style and so take our comments to mean we are anti psych, rather than anti bad psych treatments.

So, it all depends on which definition of CBT is being used, and possibly, did the counsellor stick to their remit or stray over into counselling. Unfortunately, the patients usually don't know that.

 

I think it can be called a behavioural therapy because they will suggest behaviours like saying "no" or help you role play what to say to someone who says you look well. If I was newly diagnosed with a chronic disease I would expect the therapist to know better than me the things that could help me cope.

Here on the forum we have had threads where people have been encouraged to use wheelchairs without shame for instance and a good therapist should know what help is available and how to access it. Also a therapists office should be a good place to talk about your own fears and anger whereas in front of family and friends you need to put on a brave face. A professional giving you permission to be sick is a positive thing.

One of the worst things about the BPS approach is that we are denied that sort of support. Go to a mental health team because you feel depressed and they will not want to discuss your depression but to try to convince you there is no disease in the first place.

 

In general, I think of regular CBT with a smart therapist as potentially useful in helping people adapt realistically to their circumstances and find ways to accommodate that. I can see where that might help with "stress"--anxiety, depression or whatever. Like practical guidance in not obsessing about or focusing on all the things that you can't change. The problem is that CBT is adapted all over the place, and this CBT is not that CBT, so the term has lost a lot of specific meaning and now seems to describe a general approach or orientation rather than a specific modality. So it's hard to know what people are testing and, if there are positive reports, what aspect of the CBT is impacting those reports. That means it's not really clear to me how one would apply findings from one population to another and how to compare findings across studies.

 

As I see it CBT implies a process that draws on a theory of how 'cognition' and behaviour relate causally. From what I have seen all such theories in clinical psychology that claim to go beyond common sense and compassion are more likely to be wrong and damaging than right and useful.

What patients need protection from is naive clinical psychologists who somehow think they know better than the patient because of some nonsense they have been taught at university , despite in most cases being in their twenties with little experience of the complexities of life. I personally have argued in my evidence to NICE that the term CBT should not appear in recommendations. Supportive counselling, like supportive nursing, seems entirely reasonable, but not interventions based on phoney theories.

 

The review (the first part of the thesis) of qualitative studies is actually not that bad. I suspect that if new therapists would read it, that they would better understand some of the problems with the current CBT-model in ME/CFS. Here's, for example, the author's conclusion:

 

I remember reading some of these qualitative studies (interviews with patients who had received CBT or GET). The participants were mostly patients who found the therapy helpful, but it was interesting that the things they found helpful were aspects that aren't central and sometimes even contrary to the fear-avoidance model.

Usually, the patient says that it was important that the therapist validated their illness, that they were believed as suffering from a disabling illness. This helps them to no longer blame themselves and to accept the limitations of the illness. Often they find it helpful to form a new daily schedule that is adapted to their limitations, rather than struggling to keep up with normal life to the best of their abilities. Many of these patients also find it helpful to have someone to talk to about their illness, someone who understands, as they frequently experience grief for the life they are no longer able to live.

You rarely hear people say something like: “I thought I was suffering from a chronic and disabling disease, but CBT made me realize that of my impairments were due to my thoughts and behavioral patterns.” Patients usually find it unhelpful and if therapists make these suggestions. When people mention changing activity patterns as helpful, it’s often about doing less and adapting to limitations, rather than gradually pushing through your perceived limits, as GET prescribes.

Here are some quotes from the review part of the thesis that suggest that patients found aspects of the fear-avoidance model unhelpful: