Discussion in 'Latest ME/CFS Research' started by Valentijn, Dec 14, 2016.
Loading Tweet... https://twitter.com/statuses/811276554517020673
How many more times does this need to be pointed out before 'the powers that be' acknowledge it!
MECVS-patiënten publiceren in wetenschappelijk tijdschrift
Carolyn Wilshire, the lead author for this paper was also lead author for this other paper:
Free full text:
Phoenix Rising thread:
[Black Hat On, channeling a babbler] Its just some opinions, we trust our experts, and we like the promise of saving money. [Black Hat Off]
There is something regarding CBT and ME that intrigues me, and might lead researchers of the "self-fulfilling prophesy" variety to convince themselves they have found a real cure.
From the above, CBT is commonly used to treat stress, and an aspect of that treatment is to teach more energy-efficient behaviours. If that aspect of CBT was used in PACE, then given that ME sufferers have little spare energy capacity above baseline needs anyway, any energy efficiency improvement, if it happens, will register as "an improvement".
The big faux pas would be to mistake an energy efficiency improvement for an energy availability improvement; in both cases an ME sufferer would likely self-report the same thing - feeling less fatigued.
Could the above have contributed to the very nominal improvements suggested within the PACE trial data?
Interesting idea, Barry, but the description of CBT in the particular leaflet you have found is specific to CBT for work based stress.
From what I've read about the CBT used in the PACE trial, the focus was very different. The thought patterns PACE aimed to change were around 'false illness beliefs' not work place stress reduction. I doubt it includes any advice on 'work smart not hard'. More like the opposite aim of increasing physical activity through reduction in 'fear avoidance,'
It seems to me that CBT can be a cover for anything. The overall aim is to change the way a person thinks, or interprets their thoughts.
This can be done:
1. entirely for the benefit of the client by helping them to identify thoughts that are making them unhappy or stressed and helping them see things more rationally.
2. or with mixed benefit for client and employer like the above work based program aimed at having a more efficient, less stressed work force,
3. Or, more sinisterly, with the unacknowledged aims of brainwashing patients to believe their physical illness isn't real and that they are feeling better for long enough to fill in questionnaires in the way the 'therapist' wants, to support their theories, as with PACE.
It is relevant, I think, that the people carrying out the so called CBT for PACE were not psychotherapists trained in CBT, they were nurses given specific training for PACE style CBT. In other words they did not have the wider experience of other more benign CBT and were not made aware that what they were doing was in any way questionable.
It's impossible to say as we don't have blinded control groups, nor objective measures of activity levels and concentration ability before, during and after the trial.
Actually, this was Beck's original idea - that depressed people are simply not seeing things rationally. Then research in the 80s suggested that it wasn't about being irrational because in fact happy people tend to overestimate their future possibilities, and depressed people actually make assessments that are closer to reality. Turns out being rational is not good for us, its helpful to be a little overoptimistic.
So that's why you don't hear about CBT being designed to correct "irrational" thoughts so much these days, the focus is more on "unhelpful" thoughts.
The very minor differences between the treatments recorded in the trial disappeared at long term followup - and that was only 2.5 years or so after trial commencement.
And, from memory, the more CBT (or GET?) sessions a participant had had over the 2.5 years (regardless of which group they were in during the trial), the worse the outcome at long term followup. There's a very nice analysis of that, with a graph, somewhere here on PR that deserves to be looked at again.
So, I don't think we have to get creative to explain why CBT worked - it just didn't. The differences between treatments along the way to the 2.5 year followup were just random noise, selectively amplified by enthusiastic, persuasive CBT/GET promoters.
so in the past it was: you are irrational and we are experts in rational thinking and will show you how to think.
so today it is: you are too rational, we can help you with this as we are experts in being irrational.
i think the idea that any illness is simply due to the wrong thought patterns is well.. irrational and unhelpful.
I was not trying to get creative @Hutan, it was just a thought that occurred to me.
At the IACFSME Conference Madelaine Sunnquist spoke about a large study where activity levels weren't related to illness beliefs. IIRC there was an association between activity levels and case definitions (narrower definition correlated with less activity).
This should be useful when published as it undermines CBT and GET in one blow. Does anyone else know more about it?
Not seen these links posted before (though they probably have), so thought I would (re)post them here:-
@trishrhymes: Yes I agree with you. Although stress is mentioned quite a lot in these manuals, the CBT strategy does not seem to actively encourage more efficient energy utilisation. As you say, focuses a lot on supposed false illness beliefs. Also pretty presumptuous on a lot of things.
Most or all of the material from pacetrial.org is now available here:
For example the manuals are here:
Interesting, Tom, I have not seen these before.
It is remarkable how absurd the second document is. In summary 'Here we provide you with hundreds of pieces of specific advice each known to be helpful in ME. (They include things like 'do not do too much or too little' - obviously correct.) If you follow all these bits of advice in this trial we will be able to see if they are, er, actually helpful in ME.'
It is a bit like writing a book of recipes known to produce the most exquisite food (which have never been tried out), and selling it to people so that they can agree how wonderful the food is. The only thing is that this particular recipe book does not seem to have sold that well with the customers. Maybe like Katherine Whitehorse's Cooking in a Bedsitter it was actually not very tasty.
It surprises me that manuals have not seen more attention, a great deal has been written about the newsletter containing participant testimonials that likely influenced expectations and biased the results but the manuals contain even more blatant deliberate attempts to alter expectation. From the GET participant manual
The therapist manual goes into great depth about how it is about reversing deconditioning... But as we know from the objective measures, levels of fitness did not change. It is clear the "effect" of GET was on cognitive factors, that led to a change in questionnaire answering behaviour, despite a lack of change in underlying activity levels in most patients. "Positive reinforcement" "Encouraging optimism" shows you what they were really aiming for (a change in how patients respond to questionnaires).
Positive psychology or hypomanic psychology?
You can also try a Google Site Search
Separate names with a comma.