Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Apr 27, 2019.
Open access at https://journals.sagepub.com/doi/full/10.1177/2055102919838907
I was excited to see this and I really want to like it. I know the authors all do great things for ME/CFS, but, on a first read, I've found the structure to be a bit muddled and a number of the points quite weakly made. There are some good arguments and it will be useful to have them in the ME/CFS literature. Perhaps I'm just reading it with the wrong attitude - very possible.
There's quite a long discussion about how CBT was used to treat depression and how many of the trials of CBT for CFS have had poorly selected participants, with sometimes quite large numbers of people with both CFS and depression, or even depression alone. I think the idea that the trials worked but did not have participants with 'pure ME/CFS' is not helpful. To me, the relatively small effect sizes and the likely large combined impacts of
1. a therapy which, by its nature, results in more positive answering of questionnaires and cannot be blinded, and
2. limited use of objective outcomes,
is a much more powerful argument. But those points are only given one sentence in this paper:
And then, confusingly, the authors later comment that depression may have a biological basis:
- which may well be right in some cases. But if CBT is in fact fixing people with depression as was first suggested, with their biological neuroinflammation, then why could it not fix people with CFS? I had a doctor just the other day say that a group of clinicians were surmising that CBT might be helping people with ME/CFS because it 'dampens down inflammation'. (arghh.. but that's another story).
Given doctors are thinking in that way, a lot of the authors' attempts to show that there are real biological anomalies in people with ME/CFS actually don't effectively refute the idea that CBT can help.
Another problematic argument was suggesting that CBM (CB model) proponents are being unreasonable in dismissing the possibility of a pathogen perpetuating the illness.
I don't say this often, but I'm with Wessely on this one. As much as I would love it to be found that an ongoing infection is causing this illness (I really would be very happy indeed, and still hope for it), we should be able to shoot down CBT without heading onto the unfirm ground of statements like this:
This was nice:
And this too:
(edit of format)
I think this paper is very valuable because it allows outsiders to understand that the objection isn't to psychotherapy in general but to a specific psychogenic theory. The CBT/GET proponents, when criticized, also like to deny that their model is a psychogenic one, and it's good to be able to point to a paper that refutes this. Also good to point out that it's not CBT, but a specific kind of CBT.
I'm less enthusiastic about the suggestion that clinical trials of CBT for CFS that obtained good results must have involved misdiagnosed patients that really had depression and not CFS. There are other possible explanations and we don't really know the reasons. It is not unusual that early clinical trials obtain good results while the following ones don't or even obtain null results.
This part is really good! It shows the data doesn't support the beliefs by CBT/GET proponents, who just ignore it and continue to talk about perfectionism and fear avoidance and so on.
I agree with all of @Hutan comments, but at least we have something that challenges the NICE review I suppose. If anything it’s another nail in the BPS coffin ...even if we would have preferred a stake through the heart.
One question I have...isn’t neuro-inflamation still a flaky theory that’s unproven....I may be remembering wrong on that one?
I think it's generally pretty good and makes some really valuable points. I'm sure we could all think of different emphases we'd like, or different ways of organising the discussion to really hammer the points home, but I'm hugely grateful to the team who wrote this and managed to get it published.
My main quibble is the biological part that perhaps overstates the degree of certainty about some of the hypotheses described. I don't really think that level of detail in that section is needed.
The point of the paper is that the cognitive behavioural model fails on all counts, regardless of what biological mechanisms are eventually proven, and that CBT based on the model is ineffective and can be harmful.
I read it this morning. I found it an uplifting experience and feel that it makes some very strong statements and backs them up well. I think it’s very hard not to read this and see the gaping flaws in the BPS paradigm and it also manages to have a dig at the illogical MUS diagnosis without explicitly focussing on it.
I think as Trish says we might all read it and say I wish x point was made slightly differently or more emphasis on y but I am just so pleased to have this laid out so well and may even share with medics who try to “BPS” me in future.
Finally! Can't believe this point is so seldom emphasized, that the model is self-contradictory by both advocating that patients have fear of activity while at the same time being unable to control themselves from doing too much whenever they have a tiny bit of energy.
There was a link to a Chalder presentation a few weeks back when she emphasized that relating to MUS and various other conditions within the umbrella. So this is not specific about ME (or "fatigue", whatever they mean by that), mostly about the mythical illness-behavior-for-rewards-that-don't-actually-exist (and is actually contradicted by the abysmal quality of life measured in this population but who's counting?).
Reading the history bits about the general concepts of social illness and it's even stupider than I thought. An elaborate fiction that rivals scientology in creativity and level of delusion.
" Wessely (1994) references Sharpe et al.’s study as good evidence that psycho-behavioural factors perpetuate CFS. Here, minor correlations are used to support a dogmatic CBM. One study with weak evidence is used to support other studies with weak evidence. We identified numerous examples of this practice across the CBM literature."
Yes. 'Gaming the system' to build a 'house of cards'.
The response could be interesting.
Sometimes I wonder if there is confusion about CBT here. As I see it CBT is about getting people to 'challenge unhelpful thoughts' but the thoughts that are chosen and targeted would be dependant on what CBT is trying to tackle. Hence with CBT aimed at ME they may not even aim at depression and associated thoughts - although perhaps there is cross over. So I think the argument about who the treatment applies to and that perhaps they are depressed is a very weak one.
The other issue is the use of HADS in diagnosing depression because the questions in the questionnaire cross over to the lack of ability to do things (as opposed to a lack of desire to do stuff). This could lead to the overplaying of depression.
I have obtained a confirmed advance draft of the response:
There will probably be a few words added to it, but it's mostly padding.
Very interesting discussion, thanks!
I’ve never been a subject of CBT and I have no idea what exactly are the procedures involved, and I have to admit that I don’t like Psychology theories in general. I have many friends who are Psychologists, each one following a particular ‘school’ of thought, CBT included, and none has ever convinced me to undergo treatment. One single chat with a Psychiatrist (Psychoanalyst) was enough to convince me to start some sessions, but unfortunately I couldn’t afford his price.
Have you ever tried CBT and if yes, what did (and didn’t) it do for you?
If this is off-topic, just say so and I’ll shut up
CBT is good and fine where a person's problems relate to faulty cognitions that lead to faulty behaviour. It goes horribly wrong when applied to a person whose problems are nothing to do with faulty cognitions, let alone faulty behaviour. It's not the CBT itself that is wrong, but its misapplication. Like trying to eat your dinner with a hammer and chisel.
I attended a pain clinic in 1999 it was full of vicious circle bs the experience was good only because of the other patients that were also suffering from chronic pain in one form or another but the previous 9 years had already showed me how useless treatments/pain meds were still are .but it did make me angry that their ideas just diminished our suffering.
There is literally no physical, psychological, social, or economic metric on which patients do better by being sick.
So the central claim of the secondary gains argument is completely false. It couldn't be more obvious and unambiguous.
Yet the claim survives and prospers, free of any constraints of evidence, logic, and basic decency.
How blatant does it have to get before the rest of medicine kicks this nonsense into the gutter where it belongs?
Well, it isn't if the underlying assumption is that we are really stupid. As in, despite gaining nothing from being sick, in some cases for decades, we keep thinking that we might one day, so we decide to be sick for a bit longer.
I'm not sure as it probably seems self evident that there must be some benefit or we won't stay sick, and keep living in poverty, being called liars by the press, state and in some cases family.
Gotta be one hell of a secondary gain for us to keep doing it, simply because they can't figure it out, it must be there, and it must be substantial, or we'd get better.
After all if we were really this ill then they wouldn't be able to move for all the rocks.
Just coz no one can see the benefit, the evidence (millions upon millions of chronically ill people) says it's there. It must be there. Or we wouldn't be being so annoyingly persistently ill.
I have the feeling that my chronic fatigue is partially congenital, I’ve been prone to allergies and inflammation since I was a baby, and partially acquired, as a response to infection (most likely viral). I felt really bad after being hit in less than a year by Dengue Fever and H1N1 flu. I didn’t have PEM before these infections. I was just considered ‘slow’ and ‘lazy’ by my father. My Mum was a nurse and she respected my limitations. When I was 6 years old, the school headmaster asked her if I was going to attend morning or afternoon classes. She looked down at me and said I should choose it myself, to the amazement of the headmaster. I promptly answered: ‘Afternoon!!’
Separate names with a comma.