Holmsey
I don't apologise for repeating the results of the PACE and FINE Trials, and I will keep on doing so because they provide valuable evidence about CBT and GET that wasn't available before.
IMO, the PACE and FINE Trials disprove the model of illness upon which they were based. (i.e. Wessely's theoretical illness model.)
To be clear about GET, it also failed to demonstrate clinical usefulness in the 6 minute walking distance test, because the results were so meagre. So there were no useful or meaningful improvements for either CBT or GET, when measured objectively.
As for your suggestion about playing along with the psychs, I think that's the most absurd idea. An analogy would to be to bang your head on a brick wall, just to try to prove that it didn't cure headaches. A small number of people would probably report that it did cure their headache, because their head went numb. And the psychs would convince everyone that it was good for patients anyway. Just as they have done with CBT and GET.
To answer some of your points:
You say it wouldn't tell us anything and then you go on to list what it would tell us, even if only telling us again and again then that's my point, you start looking like you have two heads when you simply deny the truth, from your standpoing going along with the Psyc's is therefore the quickest way to end their involvement, no?
I don't understand what you mean by two heads and denying the truth. I've been discussing the facts, I'm not aware of any contradiction in my discussion.
Well, except when I say that the Trial used questionable methodologies, and then heavily promote the results. I suppose that is a contradiction. But my point is that improving the methodologies would only take the result in one direction, so I think it's safe to say that the results of the PACE Trial are the very best that they could have extracted from it.
So, for all its faults, the PACE Trial is able to demonstrate some issues better than anecdotal evidence, because it is quite a high powered medical trial, even taking into account its weaknesses.
Even as the results have been flattered, by constantly changing the measures and thresholds, and by not publishing all of the data, the results are still very poor.
I think it's the best evidence we have.
The key questionable was changing the measures, that doesn't change the data gathered,
Changing the measures is an important aspect, but there are other questionable aspects of the methodology.
For example, they did not use the NICE or CDC definition of CFS, but recruited the broadest possible spectrum of chronically fatigued patients.
The minimum change needed to record a clinically 'useful' difference, was so small as to be meaningless. Only one question needed to be answered differently on each patient's questionnaire. Given that the answers were subjective, and that the study was vulnerable to bias, this does not seem very rigorous standard.
Then there was the absence of the best type of objective evidence; the actometers.
And there was missing data for the 6MWDT.
...after that you're back to arging around what the data actually tells us and it does tell us that there was a difference (GET).
A difference is not the same as a meaningful difference.
The difference for GET on the 6 minute walking distance test was not meaningful, looking at it in either relative terms or absolute terms.
When you look at how many participants dropped out of the 6MWDT, and the absence of data to explain why they dropped out, and the inappropriate use of a 6MWDT to measure the function of CFS/ME patients, then it becomes even less meaningful.
And of course, the actometer data, which would have been superior evidence, was not provided.
The evidence from PACE is quite clear, despite its weaknesses, and even though much data is missing.
Bob said:
Employment hours were not increased, and benefits claims were not reduced.
Actually unless you have access to something that I understand even Mar beleives has not been released then you can't claim that all you can say is they have never said how many did. Back to knowing before we know!
The employment data has indeed been released, in the cost analysis paper.
There was no improvement in average employment, and there was no improvement in the number of participants who lost hours of work.
These results haven't been widely understood or advertised yet, but I hope they will be, in time.
Bob said:
Some patients may well find CBT and GET useful, if nothing else is on offer to them.
Interesting admission, so how many have to get better before my suggestion we co-operate rather than restist is seen to be of real benefit, how many patients out there are influenced by the posts on this site which decry both treatments without ever giving them a go. Maybe we are responsible for stopping 5 - 10 percent from getting better, we'll never know as long as we hold to our current confrontational course. Certainly I have personall experience of professional CBT, and it was helpfull, it wasn't a cure but I learned some usefull coping strategies and I came away with a more balanced view of what it actually was, but then my therapist laughted at the idea it could cure ME/CFS.
I don't understand your use of the word 'admission'. I'm just basing my statements on the available facts. The PACE Trial showed that some people find CBT and GET 'useful' (16%), but that doesn't mean that CBT and GET have physical therapeutic value.
Is it really worth rolling these therapies out if so few find them useful, and they don't have any actual therapeutic value?
Surely it is sensible to look for something that most patients find useful.
I'm glad that you had a positive experience of CBT.
Patient surveys show that's not always the case.
And I'm glad that you had a therapist who knew that CBT and GET would not cure CFS/ME.
Clearly that's not always the case, or the PACE Trial would not have gone ahead.
Have you thought that some other types of therapies might have been more helpful, such as the ones I suggested in a previous post?
Also it's not just a case of trying CBT and GET to see if they are helpful.
A high proportion of patients have reported harm after CBT and GET.
This isn't surprising, considering the nature of CFS/ME.
I wouldn't have such an issue with CBT and GET if they were promoted honestly:
If they told patients, up front, that CBT and GET wouldn't make any meaningful difference to their disability; that only 16% of fatigued patients would find CBT and GET useful; that patients would still be severely disabled after treatment with CBT and GET; that many patients find CBT and GET harmful; that some patients say they have been permanently harmed by CBT and GET; that CBT and GET ignore and misunderstand the real nature of ME; that pacing would be more helpful and appropriate; that other therapies or education might be more helpful, such as counselling or pacing information; and that CBT and GET were based on a flawed model of illness...
Oh, on second thoughts... I would still have a major issue with them.