Actually if you read the review of the PACE trial the results showed a NULL effect meaning CBT and GET are useless ...
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The PACE data have been released (9 Sept 2016)
- Thread starter Sasha
- Start date
Actually if you read the review of the PACE trial the results showed a NULL effect meaning CBT and GET are useless ...
Sam Carter
Guest
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- 435
I'd love to hear a lawyer's take on this, but from what I've read on the web the requested data falls under the purview of the rules relating to datasets which appears to place a responsibility on QMUL to actively publish data that they provide under the FOIA.
They can refuse to publish if it is not "appropriate" to do so, but even if they invoke this clause they would, as I understand things, have to provide the data to other individuals who requested it.
"""
Freedom of Information: New Rules on Datasets
...
3. Obligation to pro-actively publish datasets
Where a dataset is requested under FOIA, a public authority must now make it available to the public via its "publication scheme" (i.e. publish the dataset on its website) – unless it is "not appropriate" to do so.
""" [source]
"""
The question of course is – what can be considered “not appropriate” in this context?
…
examples where publication might be “not appropriate” include:
• where there is no wider interest or value in publishing the dataset;
• where it would be expensive to publish the dataset;
• where there are technical issues with publishing the dataset
""" [source]
"""
In deciding whether it is appropriate to publish a dataset under its publication scheme, the public authority should also take account of the public interest in transparency and accountability.
""" [source]
"""
If you are a public authority (as defined in FOIA) making a dataset available in response to a FOIA request, you must, so far as is reasonably practicable, make it available in a re-usable, electronic form. You must also make requested datasets available in your publication scheme in a re-usable form unless you are satisfied that it is not appropriate to do so.
""" [source]
They can refuse to publish if it is not "appropriate" to do so, but even if they invoke this clause they would, as I understand things, have to provide the data to other individuals who requested it.
"""
Freedom of Information: New Rules on Datasets
...
3. Obligation to pro-actively publish datasets
Where a dataset is requested under FOIA, a public authority must now make it available to the public via its "publication scheme" (i.e. publish the dataset on its website) – unless it is "not appropriate" to do so.
""" [source]
"""
The question of course is – what can be considered “not appropriate” in this context?
…
examples where publication might be “not appropriate” include:
• where there is no wider interest or value in publishing the dataset;
• where it would be expensive to publish the dataset;
• where there are technical issues with publishing the dataset
""" [source]
"""
In deciding whether it is appropriate to publish a dataset under its publication scheme, the public authority should also take account of the public interest in transparency and accountability.
""" [source]
"""
If you are a public authority (as defined in FOIA) making a dataset available in response to a FOIA request, you must, so far as is reasonably practicable, make it available in a re-usable, electronic form. You must also make requested datasets available in your publication scheme in a re-usable form unless you are satisfied that it is not appropriate to do so.
""" [source]
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A.B.
Senior Member
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- 3,780
I think you're being too generous here.
I think that based on what we know, and the behaviour of the authors, all they have done is creating and documenting a small placebo effect on some subjective measures. They then inflated the effect with statistical tricks, "accidentally" made a major statistical error while defining recovery thresholds, selectively reported information that fit their preferred conclusions, suppressed inconvenient data, further exaggerated these results in the press while associating critics with violent extremists (which may not even have existed)
How they got through peer review is still a mystery, but they do seem to have friends at the Lancet and Cochrane.
The study was then used to promote and sell CBT and GET training packages for health care professionals, for rejecting and delaying disability claims, and to minimize medical investigation of patients. The authors probably enjoyed prestige and a variety of material rewards for being considered the experts behind the only evidence based treatment for the illness.
The 2.5 year followup is entirely consistent with this interpretation since there were no differences between the groups. The authors bizarrely proposed that the lack of differences was due to patients in other groups receiving CBT and GET, but their own supplemental material disproved this explanation. Due to the other groups receiving CBT and GET according to their preference, there no longer even exist any clearly defined treatment groups. At this point the study is truly uninterpretable, which is very convenient if the only reasonable interpretation contradicts the preferred conclusion of the authors.
Science, in particular in the UK, is so dysfunctional in this area there were and still are almost no objections.
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Research 1st
Severe ME, POTS & MCAS.
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- 768
Sorry for my mistake Dr Speedy, but then if the result is null (zero) I think we alI want answers before more patients suffer and even die from their ignored neuroimmune diseases hidden inside the umbrella of a fatigue based diagnosis using no test to confirm it present (dangerous way to 'diagnose' disease).
eastcoast12
Senior Member
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- Long Island ny
Just wanted to change something. I put it in caps cause I don't now how to put it in bold. These people suck at life.
BurnA
Senior Member
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- 2,087
Is this a big concern - if so what can we do about it ? How many other trials would there be ?
The FINE trial had null findings. I think this is worth highlighting.
The PACE was the largest of its kind so it would be kind of hard to point to a smaller trial and say "see I told you so "
Presumably all or a lot of the other trials were just as flawed with no blinding and subjective outcomes ?
For me the personality type "research" is the most hurtful - I wouldn't mind laying into those papers sometime.
Just reading the CIHR response makes me realise how many papers there are portraying us in such a flawed fashion.
Still, one ridiculously flawed pseudoscientific paper at a time, as the expression goes.
For my money, I think we will be impressed by how quickly this rickety edifice comes tumbling down with the right discovery. I think it comes down to money and if it becomes cheaper or more profitable to treat us rather than ignore us things will move so fast it'll make our poor knackered heads spin.
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@Dr Speedy what is the 'ridicule' towards patients from BPS that your latest piece refers to?
Large Donner
Senior Member
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- 866
I asked the question about Alem Mathees distributing the data that he's receives from QMUL of a relative who is a practicing barrister, albeit one not specialising in FOI issues. His answer is
So use that as you will
I am pretty sure that the requested PUBLIC info will have to be handed to the court (at least one copy as it is the court who have made the order) as "agents" of Mr Mathees and therefore the information by default comes into the public domain and any person who requests a copy from the court will at most just have to pay a small admin fee to receive it.
Other wise any person who has been given a court demand for money or information could just claim they had handed it over to the requester.
I am not sure though.
Secondly the alternative way to obtain the info would be to make a request for the exact same info to QMUL as it has already been judged to have no protection of release under the FOI act.
I am pretty sure people make the same request for the same info all the time under the FOI act to public bodies and may not even be aware of each other or each others request. It just stands to reason.
For example:
Dear government please can I have the unemployment figures for the months x y z for the year.......
Response:
No sorry we have already given them to someone else.
That's just not the definition of public information.
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It occurred to me that Julie Rehmeyer did a great presentation at a conference of statisticians. It sounded as though they were intrigued - might that be a way to get interested professionals to re-analyze the data released to Mr Mathees? Also even though she is not a statistician, Rebecca Goldin might have contacts as well.
worldbackwards
Senior Member
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I don't think this is true. Zombie ideas have a grip on people way beyond their actual utility. Never discount the desires of people for things to remain the way they always have been, as opposed to the hassle of changing everything about and getting rid of all that you think you understand.
Tom Kindlon
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actup
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This is an excellent table of wildly differing interpretations of Chalder's physical function scale (used for the PACE trial) by researchers associated with the PACE and FINE trials. Evidently NO ONE can make sense of this scale. I think we can be excused for thinking it beyond absurd that this scale would be used in any research setting.
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slysaint
Senior Member
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The physical function scale is not Chalder's but it is one of the subscales from sf36. It is used quite a lot but in my mind isn't good.
Chalder's scale is the fatigue one which is really really bad and has two different marking schemes which mean in the FINE trial some patients fatigue both improved and got worse based on the same questionnaire.
AndyPR
Senior Member
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- 2,516
Kind of random, but I think it'll be of interest. This screenshot is from the recent Dr Unger webinar, which I'm working on at the moment, and shows the SF36 scoring from the patients that they've been testing only, so no attempts at 'treatment' (as I understand it). I think it's self-explanatory other than that.
Stewart
Senior Member
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- 291
This is pretty much the central tenet underpinning how politics is conducted in the UK - one of our major political parties even has a name that means "averse to change or innovation". General Elections in the UK usually see the major parties compete to see who can do a better of job of reassuring the voters that they're a safer pair of hands who won't do anything too radical.
I don't think it'll be enough just for PACE to be discredited - people in positions of authority will have to embarrassed into action. Thankfully it looks like there's going to be quite a bit for them to be embarrassed about - and the recent work by Davis, Naviaux etc might also encourage them to conclude that it would be better to change direction sooner rather than later.