Discussion in 'PsychoSocial ME/CFS Research' started by JohnTheJack, May 11, 2019.
Sci Hub link, https://sci-hub.se/10.1177/1359105319847261
Just skimming, but this jumped out at me...
I'd say good luck with this bit.
I'd suggest that any researcher who is wanting to recruit a decent sized cohort to take part in a GET and/or CBT study will need to work on establishing a good reputation with the patient population first, given the harm done by the third rate efforts of the BPS school to date.
I’m wondering what the point is in flogging this dead horse? I think there is sufficient evidence from the 18 studies that failed to show any benefit (albeit badly designed). Even with their positive bias they failed to show anything in PACE?
So let’s do it again and again ?
I think they would really need to bring something radically new to the table ...not just do another study to prove what we already sort of know. Plus what about the reported harms? Is ethical approval likely now?
Not accounting for the existence of the existing biophysical research, however incomplete, doesn't imply sound motivationn or relevance either...
Btw Is there a list of all 18 papers you mentioned?
I don’t have access to the full paper ..but I would imagine they are the ones the pace authors mentioned in their rebuttal to the PACE reanalysis and the ones that paved the way for PACE in the first place.
All Similarly flawed in terms of bias. There are some by Chalder Sharpe and Wessely I believe. The key point is the authors manipulated their data to ‘match’ the data in the previous studies ...the PACE Trial was supposed to be the trial that validated the earlier papers ...bigger cohort, etc etc...so the fact that this failed so spectacularly to show any improvement kind of invalidates what went before.
I think some of them are referenced here
Others I’m sure will have a more detailed list
Excellent paper. This will be very useful.
I do find it strange that it mentions a need for high quality clinical trials of CBT/GET (this is what it seems to say). There is no special reason to believe CBT/GET are effective. The only reason this was believed were a) the existing RCTs which are now recognized as being of poor quality, and b) the cognitive-behavioural model of ME/CFS which has no theoretical basis. Rephrasing this, there is no theoretical reason to believe CBT/GET would be effective and no reliable evidence from existing studies that it is. Therefore there is no special reason to think that an effective treatment could lie somewhere in the direction of CBT/GET. I would argue that the existing clinical trials of CBT/GET are consistently bad because obtaining a positive result for CBT/GET seems to require methodological weaknesses that inflate the apparent treatment efficacy. So let's not put even more money into CBT/GET studies but look in other directions for treatments instead.
But it's far from dead, else we would not still be in this absurd mess. The BPS horse is still thrashing around spreading it's muck everywhere. (I actually like horses by the way, and am only pursing the idiom. But then again, I also admire good scientists).
I think that is the sub-texted point though Andy - if people are going to tout quack treatments, then they need to provide good evidence they work ... which of course they never will be able to, if they are no longer allowed to skew their findings.
I guess they will be in the recent Keith G and others paper. Will look when possible
The paper suggests that a further study into GET and CBT needs to be done?
I don’t think there is much point for more money to be wasted in this area from the weight of evidence that suggests it is ineffective. In summary wot @strategist said
Surely it's impossible to do a high quality trial unless you include objective data ?
Well, my point was more that the general patient population will be understandably against any further research into GET or CBT unless they are convinced of the integrity of both the study and the researchers behind it. There could still be value in studying graded exercise, if it looked at the biological changes over time between healthy but sedentary controls and patients - but obviously the devil would be in the details, graded exercise that ignores PEM wouldn't be, in my opinion, ethical.
For a bit of background, about the authors (all working for Panaxea, "an independent consultancy company spun-out from the University of Twente, Enschede, the Netherlands")
I wonder why they did this review and who paid for it.
In 2016 I had some contact via Twitter with Mr. Vrijhoef. He was going to come to the screening of the Forgotten Plague. He clearly has an interest in the subject. He sometimes retweets some of my blogs and other stuff.
Because despite showing that it failed, this "body of evidence" is used to show that it works. Even though it literally shows otherwise. Which is insane and yet here we are.
The horse may be dead, but it's still somehow trashing the place down while the medical profession nods in appreciation over the horse's success at keeping us away from them.
A properly-run study would obviously show it's useless junk and one taking proper record of harm would obviously show that, at least if it's actually a trial of ME patients and not a random group of people who may or may not have chronic fatigue. It's like inviting someone to show their super-duper-secret-evidence-that-totally-exists when you know fully well that they are making it up.
Hence why there will never be a properly-run trial or study for this. Think of it, the whole "we're chased out of town" strategy is actually a pretty devious way of avoiding that. They would loooove to continue but, shucks, they were harassed out of it and best they can do is continue doing the same small unblinded trials with laughably bad methodology over and over again.
You could start your search in the science library: https://www.s4me.info/threads/publications-from-the-pace-trial.60/
I'd suggest to not do any GET/CBT trial on ME patients.
And I'd suggest investigating graded exercise in ME patients, as I posted earlier in this thread.
Agreed, but my point was that I think the authors fully appreciate this, and were making their statement almost as an oblique challenge to any scientist stupid enough to think it worth running such a further trial.
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