alex3619
Senior Member
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- 13,810
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- Logan, Queensland, Australia
(PS In this process I discovered it is still legal for patients to secretly record medical interviews in my state, though not in most states of Australia.)
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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"When is it appropriate to say that patients have recovered? When they are cured of cancer, when their health condition allows them to return to work or when they feel as well as they did before they were sick?"
It is an interesting question. However it is very hard to argue that the revised definition of recovery the PACE Trial investigators published on is anything close to satisfactory. I was a co-author of the paper that discusses this in more detail:
Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial
http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724?journalCode=rftg20
I was also a co-author of the rejoinder to the PACE Trial investigators' response:
PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White (2017)
https://www.researchgate.net/public...arpe_Chalder_Johnson_Goldsmith_and_White_2017
It is interesting that you bring up the point about employment. Letters to the editor in response to the PACE Trial recovery paper requested such data and other objective data on those the PACE Trial investigators claimed were recovered but the PACE Trial investigators refused to give it:
http://www.meassociation.org.uk/201...ournal-of-psychological-medicine-august-2013/
Also your own Cochrane review of exercise therapy for CFS did not publish data on employment measures and other objective measures that have been reported in trials that have assessed exercise therapy for CFS.
I raised this point in a comment on your review which can be read here: https://www.dropbox.com/s/koehut6iw2bm9v5/Larun_et_al-2017-The_Cochrane_Library.pdf?dl=0
The court will also examine current practice – the cornerstone of most defence cases – in the light of whether, as well as being ‘current’, it is logical and reasonable. What this change of emphasis means, broadly speaking, is that it is less easy for medical practitioners to set up a kind of ‘closed shop’ of practice, in which they can establish their own version of the accepted norms and then call upon each other to testify as to these norms.
I heard a lecture on ME, CBT and GET from his compatriot and Cochrane-review colleague Lillebeth Larun last year. She actually made a point of not seeing ME-patients, just reading trial-papers, and thus had a better grip on the real answers.. She seemed very genuine and convinced that the research behind CBT/GET and ME is solid.I've just read the abstract of the Cochrane review that Brurberg was involved in writing. I now see where he's coming from more clearly. They seem to have taken all the studies they included at face value as if they were high quality studies and simply looked at the numerical data without any understanding of underlying issues, or even of what ME is.
How on earth can Cochrane be taken seriously if it's just number crunching.
Brurberg is a medical physicist who got his PhD for medical imaging and seems to have moved sideways into assessing the quality of clinical research with no medical training or understanding of the need to look below the surface at possible flaws in the methodology.
How very useful he must be to the likes of the PACE authors. He's being used. I wonder whether he realises this.
A busy doctor has the defense that they do not have time to fully investigate every aspect of the science. A reviewer does not. There are multiple major flaws in PACE, a few of which should invalidate the entire project on their own, and even more that put it in severe doubt.It might not even have occurred to them that "prominent" researchers as the PACE-team can get anything seriously wrong.
(PS In this process I discovered it is still legal for patients to secretly record medical interviews in my state, though not in most states of Australia.)
Also legal in Victoria, apparently. I would want to confirm this before doing it though ... just because some web site or paper says it is legal is not an excuse to do something potentially illegal. I think I got it off a web site, but I could be wrong, I read so many things yesterday.Legal in Qld, NT, illegal in other states?
Yes. Its a political tactic. The problem we face though is that, being reasonable science types, we are ill suited to politics. I would never be a politician. This is why psychobabble is hard to fight. Reasonable people, rational people, are often ill equipped to fight the psychobabble politics. We will win eventually, but great harm is done along the way. " Eventually " can take lifetimes.I'm very angry about how these psycho medicine believers are controlling the debate. There's huge bias. But I just don't like this particular tactic.
NICE also says that heart rate monitors should be used with GET. Even the "experts" don't do it, and often even discourage it.If the Bolam test or something like it still holds, the mere fact that NICE recommends GET may mean that in most cases doctors have a defense against any claim of negligence unless there are further complicating factors.
Also legal in Victoria, apparently. I would want to confirm this before doing it though ... just because some web site or paper says it is legal is not an excuse to do something potentially illegal. I think I got it off a web site, but I could be wrong, I read so many things yesterday.
I'm maybe a lone voice here, but I'm not that keen on James Coyne's method of attack. The Brurberg article was very lightweight, but I would have preferred to see it criticised on its own merits (or lack thereof), rather than implying the author is somehow in cahoots with the people he recommends to review.
He also responded to a comment from @Keith Geraghty - I think it's at the very top of the comments. But he has no defense for any of the criticisms of the article content itself.The fact that of the 50 comments, the only one the article author has responded to is this one from Coyne speaks volumes about his petulance at being rejected and his apparent unwillingness to engage with the substantive issues of error in his article.
He also responded to a comment from @Keith Geraghty - I think it's at the very top of the comments. But he has no defense for any of the criticisms of the article content itself.
I'm maybe a lone voice here, but I'm not that keen on James Coyne's method of attack. The Brurberg article was very lightweight, but I would have preferred to see it criticised on its own merits (or lack thereof), rather than implying the author is somehow in cahoots with the people he recommends to review.
Of course you're going to pick people sympathetic with your viewpoint, it would be idiotic not to. Unless there's a genuine COI - not just a common perspective - there's not much of a case to answer. The journal could just decline to use those people, that's all that's needed.
Sometimes the Coyne rhetoric just goes one step further than I'm comfortable with.
I suppose its a personal preference, how "reasonable" one should be when battling the claims of those who are not reasonable. Maybe that stuff has its place - fight fire, with fire and all that. But I guess I prefer the idea of us being in totally, completely 100% in the right.
I'm very angry about how these psycho medicine believers are controlling the debate. There's huge bias. But I just don't like this particular tactic.
He may come to regret his childish behaviour when PACE is finally publicly debunked and treated as the pseudoscience it is. His response and his defence of his error ridden, ignorant article is on the record.
It was something I read in passing. I will see if I can find it again.Link?
There is specific State/Territory legislation relating to audio recordings of private conversations and whether consent of all parties is required . In all jurisdictions except Victoria, Queensland and Northern Territory, it is illegal for patients to record your consultation without your permission and members with concerns could advise their patients of this scenario.
Your wish seems to be that these trials should continue to have an unfair advantage over pharmacological trials, and that any bias due to non-blinding should simply be ignored.