And...dingdingding. You've just hit the nail (and yes, I know, i'm shamelessly mixing my metaphors) on the head. This is what's so crazy-making to me about the position the Psych Cabal has staked out. Of-freaking-course there's a psychological component. There's a psych component to all illnesses. Sickness is a trauma. It stands to reason there is an emotional/mental reaction to that trauma; which presents differently dependent on the person.
That doesn't mean a girl don't need a doctor. And it doesn't mean it's all in her head.
The position you've set out, debergerac, is the (apparently) quite obviously reasonable and balanced position that I think most people would take as read. Of course there are 'psychological' and 'emotional' (do those two words actually mean different things in this context?) consequences to any illness. Of course some cope better than others with those issues and some need some kind of support, counselling, whatever. Most people - certainly including my own family - are rather baffled as to why the ME community is so resistant to these obvious points. "Psychological support is useful in any illness," they say, "and since there are no other proven treatments available this is all that can be offered in the meantime - that's reasonable, what else can they do when there is no alternative treatment yet, why are you so opposed to it?" (They don't generally wonder why there is still
no treatment other than psychology for a disease dating back to at the very least 1955 - a poor return indeed for 55 years of research into what everyone nominally agrees is a physical illness).
Well first of all, all of that
is quite obvious, and so I find it
extremely insulting that when I/we try to say there is a lot more to it than that, with what is going on with ME/CFS, so many people seem to imagine that I/we don't understand these basic and obvious points. I wish they would ask themselves the question as to why we are still kicking up such a fuss, and rather than concluding that we must be a bit mad or stupid or resistant to psychology for some reason, instead they should try to listen and look deeper and realise that the fact we are making a fuss indicates that there
is more to it than that.
Part of that fuss is that when you look at the bigger picture, not only do you begin to discover that CBT/GET are the only therapies that have been explored in the UK, and that's the only reason why they are the only ones with a "strong evidence base", but you also find that there are loads of other practical tips and measures, and treatments, that many/most people find helpful and yet are completely absent from any information available from your NHS doctor. Most, in my experience at least, won't even begin to suggest experimenting with rotation/elimination diets to explore what effects different foods have on your symptoms. Vanishingly few will suggest exploring your chemical and environmental sensitivities: such concepts are a complete taboo. And never will they suggest trying Co-Q10, or B12, or other supplementation protocols, nor clearing methylation blocks, nor exploring viral loads and enteroviruses or other infections - or any of the other things that are available in other countries. They've never heard of
any of that stuff in relation to ME/CFS. And crucially, the entirety of the paltry ME/CFS research budget continues to be poured almost exclusively into CBT/GET research instead of medical research into the disease.
There's this total disconnect where they now
say they accept that ME is a physical illness - but they still don't fund any research into it or investigate any of the other treatments - and if they
do investigate any such things there are psych fingerprints on the studies and they almost invariably find that something that somebody else found in the US doesn't seem to be replicated in the UK - using a different definition of "CFS/ME" that was made up here, of course...
But one of the most fundamental points, I think, is that "psychology" as most people imagine it in this context is a kind of counselling, a form of emotional and (to some extent) psychological support. Help with coping and structuring your life. Whereas what we are actually talking about here is not even just "CBT" - because one has to realise that "CBT" is a
technique, effectively a rule-based way of exploring and restructuring how your thoughts and behaviour and experience are related. So in itself, "CBT" doesn't actually mean
anything in practice: CBT also has to have, in each practical case, a
model of the dysfunction of thoughts and behaviour: it has to have some idea of what thought/behaviour patterns are counter-productive, and what you want therefore to change them
from and what you want to change them
to. That model will vary. I had very effective group CBT for depression and it was nothing like the CBT that the PACE trial talks about: only the technical principles are the same.
So studying the effectiveness of "CBT" may be as misleading and stupid a way of thinking as studying "ME/CFS" cohorts where one study uses a completely different cohort definition to the next, and then imagining that they are comparing the same illness. The type of CBT that Dr Klimas refers her patients to, I am sure, is completely different to the PACE study's approach to CBT. Dr Klimas, when she talks about CBT, talks about
Pacing, about adapting to your envelope. The UK talk about CBT is about expanding your llimits - pushing yourself - the worst thing that somebody with severe ME can do - and it is based on concepts like the idea that we have "false illness beliefs".
Similarly, studying "CBT" as if it were as consistent a treatment as a drug is also clearly ridiculous. Consider: would you rather have Trudy Chalder as your CBT practitioner (shudder!), or Fred Friedberg? It would be a completely different experience because the practitioner's radically different beliefs about ME/CFS will affect what they are saying. CBT is supposedly more 'scientific' and 'measurable' and practitioner-neutral than other techniques - but I'm not buying that hype: the human you're talking to, what they believe, and the detail of the model of your illness that they are working to
must have an impact on the therapy.
A lot of the arguments we get into are just about this, because just as with arguments about "ME" and "CFS", when we talk about "CBT" we do so as if it were just one simple, well-defined consistent thing. That's a cognitive shortcut. But CBT in the US is almost certainly very different from CBT in the UK. After a controversial comment by Cort about CBT, I got him to explain to me over the phone what he thought "CBT" was. He described pacing, just in the terms that Dr Klimas uses. He described the sort of approach that we are trying to argue
for.
Something about apples and oranges, innit? Or potatoes and potartoes?
Anyway: for me, before the PACE trial came out, I subscribed to the reasonable position I set out at the top of this post: CBT can be useful for some people with ME/CFS (though probably not for people with severe CCC ME, and only for people who don't have other coping mechanisms like meditation, faith-based emotional support, other kinds of counselling, support from families, and other such resources).
PACE has changed my view. The results were so spectacularly poor, even after the investigators' best efforts at setting up the trial in the most favourable conditions possible for them, and the methodology leaves so much room for perception bias and all kinds of other ways that even the modest results could be distorted by placebo-like effects, that it has caused me to call into question whether CBT actually does anything at all, beyond perhaps making some people feel like somebody is talking and listening to them and trying to help, which makes them
feel a bit better even though they aren't - an effect which any kind of counselling or emotional support could have.
So PACE has made me begin to wonder whether CBT even has any significant health benefit for even the small subset who appear to get a tiny improvement. The next step I am now wondering is: if a study so flawed and so capable of being illusory in its conclusions can sail through peer review in this fashion, what about all those other illnesses that are supposedly helped by CBT? How robust and reliable is all of
that evidence, really? Do they use actual biomarkers or physical measurements of any kind in those other studies? And how believable are the results achieved there? Perhaps the extra pressure put on the PACE trial, by the campaigning attention it has got, to make it somewhat more rigorous than the average CBT study, explains why the results are just about the poorest from any CBT trial for ME/CFS yet conducted. Maybe the more rigorously you do these studies, the more the effect melts away.
Frankly I would say that if your argument is that CBT can help with pretty much any illness, then I would agree only insofar as you are saying that counselling and emotional support can help you to live with - accept? - any illness. That is the reasonable position that most people
think they are supporting when they support the psych lobby position on ME/CFS. Well: I would kind of agree with that: counselling support of some kind should be available to anybody with chronic illness. As a choice. If they want it and feel they need it. They would know best. And they should also have an informed choice over modality of therapy.
This whole thing is supposedly driven by the need for evidence to support all medical treatments. That's total BS in reality here, but I would say this: if you want to compare, based on evidence, which psychological treatments work best, then give us league tables comparing patients' verdicts on specific individual practitioners, modalities of therapy, and treatment centres. Don't pretend these therapies are as homogeneous as drugs. Compare CBT with person-centred therapy, buddhist meditation, and Dr Myhill's treatments, and let's begin to see which treatments really do work best.
And convince us that you really
do believe that ME/CFS is a serious physical illness that affects at least a quarter of a million people in the UK by finally beginning to conduct some serious medical research into the condition.