Discussion in 'General ME/CFS News' started by Kalliope, Mar 12, 2018.
Inara, dangermouse, Luther Blissett and 30 others like this.
And now some potentially good news from the Netherlands.
Two years ago, the Dutch parliament asked the Health Council—an independent scientific advisory body—to review the state of evidence related to the illness generally called chronic fatigue syndrome in the Netherlands. That review was to include the evidence for rehabilitative treatments like cognitive behavior therapy and graded exercise therapy. The Netherlands, of course, has its own chapter of the CBT/GET ideological brigades. These researchers, like their close colleagues the PACE authors, have published methodologically problematic studies that have appeared to affirm the efficacy of CBT and GET.
I have seen a copy of the committee’s draft report (in Dutch), which was distributed to stakeholders in November for comment. The final report based on that draft is scheduled to be released next week. Despite concerns expressed at the beginning of the process that the biopsychosocial forces might dominate the proceedings, the draft report significantly downgraded the current recommendations for rehabilitative therapies, so here’s hoping few or no changes were made in the final version.
The draft stated flatly that, based on the evidence, “the committee sees no reason” for GET to be used in the Netherlands. As for CBT, the draft noted that “a small majority” of committee members believed it could be helpful for some patients. But those in this group also acknowledged that patients also reported having been harmed by the approach, and they suggested that the treatment should be pursued with care. The other committee members objected to any use of the kind of CBT designed for ME/CFS, in part given the therapy’s reliance on the theory of misguided illness beliefs. In any event, this split decision was hardly a full-throated endorsement of CBT.
Luther Blissett, Sean, MEMarge and 14 others like this.
Intriguing news from Holland from David.
I feel I should correct David on two technical points, though. Firstly, however much they think they do, Australians do not live in tomorrow. The time shift from SF to Melbourne is 6 hours - less than to London. No sweat David.
Also they do not drive on the wrong side of the road - that is what people do in the USA and on the continent. They even have cars with the steering wheel on the wrong side I am told.
NelliePledge, Luther Blissett, BruceInOz and 16 others like this.
Wow. If there are no changes in the final report, that is a very very encouraging news. Especially given the number of psychobabblers in the Netherlands.
Inara, Luther Blissett, MEMarge and 19 others like this.
To my friend Professor Edwards' points--I have to look at the hours again, but it's now 9:35 am Monday morning in SF and 3:35 am Tuesday morning in Melbourne. And we just moved ourselves forward an hour this past weekend, so I'm confused about the time shift. Why isn't that 18 hours ahead? Do we not count the international date line crossing? But numbers are not my strong point. About the other point, I specifically wrote the "other" side of the road, not the "wrong" side of the road.
NelliePledge, Luther Blissett, MEMarge and 21 others like this.
About the other point, I specifically wrote the "other" side of the road, not the "wrong" side of the road.
It is really hard to argue against what we do when it is literally called driving on the "right" side of the road, though, isn't it?
NelliePledge, Luther Blissett, MEMarge and 5 others like this.
I fear I am off topic!
NelliePledge, Luther Blissett, TrixieStix and 10 others like this.
There’s the queen stuff, of course. They also drive on the other side of the road.
... where, to me, your first sentence sets up the meaning of 'other' in your second sentence .
Luther Blissett, MEMarge and Daisymay like this.
A clear case of when right is obviously wrong then .
Luther Blissett, Keela Too, Invisible Woman and 2 others like this.
In the early years of English colonisation of North America, English driving customs were followed and the colonies drove on the left. After gaining independence from England, however, they were anxious to cast off all remaining links with their British colonial past and gradually changed to right-hand driving. Incidentally, the influence of other European immigrants, especially the French, should not be underestimated.
MEMarge, Indigophoton and Invisible Woman like this.
whether I meant "other" or "wrong," the main point is that Australians themselves should not want me driving there!! I am happy to leave any driving to them.
Luther Blissett, Missense, Hutan and 11 others like this.
From SF to Melbourne, your calendar needs to shift 18 hours, but your biological clock only needs to shift 6 hours.
Luther Blissett, Keela Too, Missense and 9 others like this.
This, to me, highlights one of the most disgraceful breach of ethics by the PACE authors, that I would like to see addressed in more detail at some point, because to me it shows clear and unequivocal misrepresentation. I'm not sure if it maybe leans towards the fraud issues that are underway.
We have here an unambiguous case of a supposedly dedicated scientist, Trudie Chalder, clearly endorsing and reinforcing a claim based on her own research, which even exaggerates what she and her co-authors already exaggeratedly claimed - recovery instead of improvement. Any scientist with the slightest inclination to rigour and integrity, would have picked up on and corrected that instantly; but instead seemed to scavenge on the additional morsel that appeared for the taking. This I think has been a strategy adopted time and time again, and though easily overlooked, is I think a major and incredibly easy to prove malfeasance on the part of the PACE authors. There must be plenty more of these easy wins to pick up on.
Inara, Luther Blissett, Sly Saint and 24 others like this.
Now that is something I can certainly identify with - never driven on t'other side of road.
We are planning a bit more addressing in fact and this is a good one to flag up. Thanks.
Inara, sea, NelliePledge and 27 others like this.
Looking at what they did and at that statement by Chalder, it is clear that they manipulated what they said to exaggerate the claims. Given that Chalder has never publicly, as far as I have seen, explained or retracted that comment, it is fair to hold her to it. They colluded with each other and the Dutch authors of the commentary on how to do this. Whether they did it "intentionally" will be for some panel ultimately to decide, whatever I might think.
sea, Luther Blissett, Sly Saint and 27 others like this.
Just stepping back from PACE etc, and just imagine a normal human interaction, in a pub, within a family, at work, whatever. If something you have said is being grossly misrepresented, and that misrepresentation clearly is to someone else's disadvantage but to your advantage, then what would normal decent people think of you it you didn't pipe up and say "No, much as I appreciate the thought, that is not correct I'm afraid".
Binkie4, Luther Blissett, Keela Too and 7 others like this.
It's actually not that bad. The brain just tends to flip the definitions of left and right. I remember doing a lot of pointing left and saying right etc. The trickiest thing is driving a left hand drive car on the left side of the road (or, I imagine, a right hand drive on the right). Did that while visiting the UK while living in Germany.
Barry, Luther Blissett, Invisible Woman and 2 others like this.
Thanks for the updates - fingers crossed that the final report is a step in the right direction.
This commentary declared that participants in the CBT and GET groups had met a “strict criterion” for recovery—a declaration that was transparently false on two fronts.
I vaguely remember there having been some official complaint to Knoop's institution about this - does anyone know what happened about that?
sea, Barry, Luther Blissett and 2 others like this.
Firstly, however much they think they do, Australians do not live in tomorrow.
Correct. We are currently barely managing to live in today.
Chalder's behaviour at the original PACE media conference, and the complicit silence of her fellow PACE and BPS cultists over her remarks, is way past recklessness and incompetence, and well into sustained systemic fraud. Not to mention cowardice, and sheer cruelty.
We are planning a bit more addressing in fact and this is a good one to flag up.
Chalder (like Lloyd and Hickie here in Oz) has managed to avoid a lot of the heat so far. But she is as culpable as anybody in the PACE/BPS cult. Besides being a lead investigator on PACE, she was in at the ground level back in the late 1980s pushing the psycho-social approach with Wessely, including as co-author on the original papers kicking off all this madness, and has been at the forefront of pushing it ever since.
I look forward to seeing that poisonous mediocrity taken down and disgraced.
Inara, Sid, Indigophoton and 12 others like this.