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.
@dave30th and @Michiel Tack , you might find this of interest, from the early days of the Dutch "CFS expert" group:
Het Parool, 22nd of July 1989: Jos van der Meer "doubts if the criteria that English and American researchers have drafted are applicable to many of dutch patients. 'I see for example few patients with swollen glands here, to name an example'"
Trouw, 24th of November 1989: Van der Meer: "We are not researching people that are 'a little tired'. It's about patients that are disablingly tired, that is to say: have lost more than half of their energy. Requirement is also that former medical examination has yielded nothing."
In that same newspaper article, actually just before the abovementioned quote, Van der Meer says that because it is at times "very difficult to distinguish" between regular, common occuring fatigue and CFS, they have involved a psychologist in the research. [Which is Bleijenberg. Anyone here thinking he did a good job at that? ]
The next interview with this paper shows how the whole biomedical project has derailed, seemingly stemming in large part from Bleijenberg's involvement. Suddenly it mentions McEveredy & Beard, George Beard, Kendell with depression, neaurasthenia and patient's "resistance" against a psych diagnosis, and Straus (who, according to Osler's Web, by this time was already convinced it was hysteria/neurasthenia). (Also DeFreitas and Gunn)
This is what the research team says about the CDC criteria then, Trouw, 9th of February 1991: "The description is too strict. With a definition like that you show too many people with chronic fatigue the door. The majority of our M.E.-patiënts doesn't meet the requirement of having to have 8 of the 11 symptoms. Our starting point is simple, persisting, disabling fatigue that exists longer than a year. The advantage of that limit is that you exclude the 'regular Pfeiffers' with it." (Pfeiffer=mononucleosis, EBV)
Thanks. I think it is sometimes underestimated how influential this Dutch group has been. They have for example published by far the most trials on ME/CFS. I also think they were more radical than Sharpe or Wessely: patients were encouraged to no longer see themselves as CFS patients.
One caveat is that the quotes in those articles probably refer to to the Holmes criteria (the Fukuda criteria were only published in 1994) and I would agree that these were too strict in requiring 8 out of 11 additional symptoms.
Ok, so this *points up* wasn't true, given Bleijenberg's past and interests. It was an excuse. Bleijenberg was already doing behavioral treatments for things like "speaking stomach syndrome"(basically if you had a noisy belly) or (I think the english term is) anismus (When you can't relax your pelvic floor muscle to relieve your bowels), the first by teaching a different way of breathing, the second with biofeedback and teaching people (women) how to poop using porridge.*
And he wrote pieces that already carry the root of what is currently known as MUS, like how IBS should be renamed "functional stomach complaints", or even more desired: "non-organically explained stomach complaints", so the diagnosis becomes "per exclusionem", and doesn't lead to expensive, non-helping treatments (in reaction to a guy who knew those treatments to have effect b/c he was actually following the latest research), while it gives the patient the unhelpful thought that the bowel is ill. Giving up the concept of IBS would lead to behavioural intervention (a good thing in his opinion) and the main treatment method of effectively reassuring the patient.
Both with IBS and the anismus there were more clearheaded physicians contradicting him (&colleague), saying he shouldn't rule out physical causes. It's very sad to see what has become of treatment and research of those two items. I haven't looked into it further, but Bleijenbergs views have prevailed above those of well-read, experienced physicians who cared for providing good patient care.
He also wrote a much-referenced paper on how organic and functional stomach complaints can't be told apart by anamnesis and psychological examination. (So, according to him, it means there is no actual difference between organic and functional.)
B/c of all this, I don't believe he was added to the Nijmegen CFS research team because, as they claimed, he was there to tell CFS and common occuring fatigue apart.
*Yes, you read that right. It fits with the whole patronising attitude he has regarding CFS, where he thinks teaching patients how to go to bed on time is a big, fruitful part of the treatment. (He tells it like he's some grand provider of truth or something, instead of "teaching" adults banal stuff that they and everyone knows since they were kids.) I often joke that he thinks patients are "too stupid to poop"(a dutch expression meaning you think someone is very dumb), because that's how he acts and it also captures everyday banal things adults know. So imagine my dark amusement when I found out that he actually taught people how to poop. By letting them stick porridge up there so they could practise "pooping" it out. You can't make this stuff up.
Reality literally outdoing satire. This Simpsons joke is a totally childish gag and this guy actually seriously does something that is above and beyond even the most satirical interpretation of that joke, because in the Simpsons episode it's actually followed by Homer writing it all down and saying it makes sense, where instead most patients here would think, even say, that this guy is off his rockers.
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