Discussion in 'Latest ME/CFS Research' started by Dolphin, Aug 25, 2013.
*I gave each sentence its own paragraph
I found it hard to motivate myself to concentrate on this and think through all the statistics (along with alternative explanations) given it was all just about changes in fatigue: changes in self-reported fatigue could be due to a whole host of factors incl. wish to feel better for oneself, wish to feel better for the therapist, etc. as well as any possible "real" improvement.
So anyway, I don't think I have any major points to make on this study but will point a few observations/quotes, for what they are worth.
The Knoop et al (2007) paper didn't show that the patient was able to resume all activities. It was just a collection of self-report measures e.g. SF-36 PF>=80.
Alarm bells should perhaps be ringing in lots of minds when one sees sentences like this.
Entry criteria: Fukuda et al (1994) CFS criteria,
It is a bit more than not every patient recovers; very few recovers following CBT would be more accurate.
It is very questionnable whether such a clear subdivision can be accurately made.
I thought this was a somewhat interesting point/admission: perhaps those who do CBT at Nijmegen may not be fully representative of patients.
This seems plausible.
We rarely get such information so thought I'd post. However, this is far from saying all the others were fully compliant.
Therapists' effect info:
In this study, they only reported on fatigue (they don't mention any objective measures and although they used the SIP, they didn't report on this), so it's less interesting.
Like lots and lots of the Nijmegen studies, there is no mention of a protocol, so we don't know how much of this is altered from what they might have planned e.g. could they have looked at the SIP results but not reported the results.
Thanks for that D. I understand your lack of enthusiasm. There are things which could be worth thinking about in here... but it could just be spun, or trivial findings. Good of you to pull out those other references too.
Post 3 was a favourite. I really don't see myself in either of those models either, and vaguely remember some doctor getting a bit irritated with me for not fitting into either in the distant past.
Isn't that exactly what you would expect to see if you studied a placebo.
Also though, I think that the bond with the therapist would be expected to increase placebo/response bias for talking therapies:
Lots of different processes end up being lumped together, and described as a 'placebo effect', so it's difficult to really say.
I caused a lot of trouble at the Dutch clinic I went to, where they very closely follow the Nijmegen model. At first they assumed I was "active" because I was crashing all the time, then they assumed I was "passive" because an actometer showed I was doing virtually no moderate activities and no intense activities at all
So while the physiotherapist and occupational therapist were trying to get me stable enough to start the GET aspect, the psychologist was suggesting I get pregnant and go for a nice swim and the relaxation therapist was having me tense muscles.
It was a huge stupid mess.
Thanks, Dolphin, for reading this so that we don't have to - and esp for giving us the digest.
I don't know why, but I continue to be staggered by the sheer lack of curiousity this reveals on the part of researchers. It would make more sense if there was good evidence that CBT or GET were good, effective therapies - but they are mediocre at best.
Contrast that with people like Stephen Holgate who came fresh to the field from other disciplines and argues that ME/CFS is probably many different illnesses, we need to focus on causal molecular pathways and that now is an exciting time to study the illness as new technologies are emerging that are up to the task. And Ian Lipkin, who led the study ruling out XMRV and promptly stated that he was committed to new research to crack the illness, saying of earlier research looking at B-cells in CFS patiets "we know these people are sick: we don't know why they are sick, but they are". And he explicitly stated that by 'sick' he did not mean psychosomatically ill.
It seems to me that researchers such as Gus Bleijenberg are stuck in the past, and unwilling to consider other explanations that might better explain their findings.
If you got this far, thank you for listening to my rant.
Yes, though it might be response bias rather than genuine placebo effect. The King of placebo research is a guy called Hrbjartsson who has done massive meta-analyses showing that when you compare placebo vs no treatment (as opposed to placebo vs baseline) the placebo effect is either small or non-existent. They don't seem to like him on the Wikipedia page, but his research is way more robust - and on a much bigger scale - than most placebo studies. His first such study Is the Placebo Powerless? came out in the New England Journal of Medicine, the top medical journal by far.
He found that the strongest placebo effects (though still small) were in psychological research and in studies with self-reported outcomes (there is presumably a high overlap between the two). He also published Placebo effect studies are susceptible to response bias and to other types of biases, discussed here.
Valentijn. So your suspicions about their claims were borne from their own practical failures? But that goes against the official party line that patients only disagree because of ideological differences with the enlightened wisdom of CBT/GET!
Yes, it is amazing that the same university which produces the BPS fluffiness on CFS also produces work such as:
Computer Can Read Letters Directly from the Brain
"Aug. 19, 2013 — By analysing MRI images of the brain with an elegant mathematical model, it is possible to reconstruct thoughts more accurately than ever before. In this way, researchers from Radboud University Nijmegen have succeeded in determining which letter a test subject was looking at."
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