Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Oct 21, 2018.
Open access at https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0205278
Rather like the PACE claims to be cost effective, this only has any meaning if the treatments actually work.
Certainly [as] with ME it is unlikely that any MUS approach could provide an effective treatment as it is just plain inappropriate. The treatment may drive patients away from the medical service treating them so inappropriately, therefore appearantly in the short term saving that service money, but it will not overall save anything in relation to the overall cost to society, indeed we are all aware of examples such inappropriate care worsening patients' condition and significantly increasing the overall burden of the condition.
[I should really read the article itself, but I just can't face it. However I am fairly confident that the studies included in this review, again like PACE only looked at short term implications of the intervention and did not address longer term issues like how many people had return to work or were still on benefits after one or two years.]
Response Twisk on Wortman review:
CBT / GET is not effective for CVS, let alone ME
(bit confused about this write up; Prince trial from 2001, is this a different trial from this one?
Does anyone else find it ironic that in a paper on cost-effectiveness (which presumably cost money to research) the only conclusion they could draw is that one therapist to many patients is cheaper than one to one?
The logical extrapolation from the conclusion that group therapy is more cost effective is the bigger the group the better.
Look at it the other way, the smaller dose of therapist each patient gets the better. Homeopathic dose of therapist anyone?
Just have everyone get together in a group and save the therapist wages
Or we could lose the therapist altogether and form self help groups... Oh wait a minute that just makes people worse.
I demand research into the ideal therapist to patient ratio and I demand it now, I tell you, now!!!
Nice comment @Michiel Tack
Are you able to edit it? I'd assume not but just in case, you missed a "t" I think here, "after the cost-effectiveness study and did no show significant differences between CBT and the natural course of the illness."
No, unfortunately, I can no change it. But thanks for spotting it anyway. You seem to have a good eye for spelling mistakes.
He is presumably referring to the Prins et al. 2001 trial. It is also a Dutch word that translates as prince.
That trial is sometimes referred to as a trial of Fukuda et al, but actually weirdly some of the patients didn't satisfy the Fukuda et al criteria!
Prins 2001 says participants were identified by the CDC criteria except for the criterion that they needed to have four of the eight other symptoms. So it was an Oxford study but they decided to call it a Fukuda study for reasons unknown.
They were challenged on this in a letter in the Lancet. This was their reply:
There's a lot to say about that trial by Prins et al. 2001.
1) There was an enormous drop-out rate (28-41%, depending on how you define it). From the 93 who were randomized to CBT, only 55 completed the trial.
2) Objective outcomes such as neuropsychological testing and actigraphy were only reported many years later in separate reviews (you have to look at the references to know it's data from that trial). These did not show a significant difference. Work resumption was reported in the 2001 paper, and there were also no differences between groups.
3) The control group failed, it did worse than the natural course of the illness, so the cost-effectiveness compared CBT to the latter.
4) No follow-up data is reported, which is strange because two people publically stated that such data existed and that these did not show significant results. The first person is Kenneth M Lassesen. He wrote in a letter to the editor, in 2001:
"After hearing a presentation on Judith Prins and colleagues’ study1 at the American Association for Chronic Fatigue Syndrome (AACFS) International Conference, Seattle, in January, 2001, I find disturbing the lack of full disclosure. At the AACFS, a question was asked about the length of benefit for CBT. The presenter stated that the natural course and CBT groups did not differ significantly 3 years after treatment."
The other person is Elke van Hoof. She wrote in an Editorial in the Journal of Chronic fatigue syndrome, in 2003:
"Most treatment studies that achieve a 1/3rd improved, a 1/3rd no change and a 1/3rd worsened result are observing an ineffective therapy as the changes appear to be a result of the normal course of the disease process. This is consistent with the report by one of the coresearchers that the effects of CBT were no longer present after 3 years (Bleijenberg G, communication, Fifth International Research, Clinical and Patient Conference)."
5) As noted, there's the issue of selection criteria:
"Patients were eligible for the study if they met the US Centers for Disease Control and Prevention criteria for CFS, with the exception of the criterion requiring four of eight additional symptoms to be present."
Which is weird. This research group used to apply to Oxford definition (but that definition differs from the first criteria of the Fukuda-criteria because fatigue has to be the main symptom). Perhaps they realized the CDC criteria had more prestige so it was better to present the results as such. I don't know.
6) The study was funded by "a grant from the Health Insurance Council (College voor Zorgverzekeringen)."
The results were published in the Lancet (for some reason they seem to like these kinds of flawed CBT-trials). When PACE-defenders say there are many other trials who have found similar results, they are talking about flawed trials like this one.
Ah, there it is.
Separate names with a comma.