"Closing the Door on Freedom" (May 1)

Dolphin

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aaron_c

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I would love to see a Huffingtonpost article with a title like "UK Commissioner: PACE Trial Critics Guilty of Conspiracy by Using Social Media" or "UK Commissioner: Group Commits Conspiracy By Talking On Social Media."
 

Hilary

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The Information Commissioner should have a good read of Prof Hooper's letter to the editor of the Lancet. That might shine a light into the murky waters..
 

Chrisb

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Given the current state of my brain, I should probably not comment. But....

There must be some doubt as to whether the Commissioner has adequately considered, or has misdirected himself on, certain matters.

Mr Spoonseeker has referred to and dealt with the point about the sheer weight of requests but I think there is another point.

The Guidance apparently states that "if a public authority has reason to believe that several different requesters are acting in concert as part of a campaign to disrupt the organisation by virtue of the sheer weight of FOIA requests being submitted......"

This guidance appears to be primarily, and quite reasonably, directed at and applicable to an entirely different type of campaign where the object is to bring about the disruption of the organisation, rather than a bona fide attempt to obtain information. Has any evidence been presented with the purpose of demonstrating that the requesters intent was disruption of the organisation of QMUL rather than obtaining the information which we believe to be the real object of the request?

Given the Commissioner's acceptance that this particular request on its own would not impose a significant burden, the onus of proof to establish whether the person was acting in concert with others, whose intent was disruption, ought to be significantly higher.

In order to show that the request constituted part of a campaign one might expect it to be necessary to adduce evidence of a campaign predating the request. It seems to me that the examples quoted by QMUL probably were made after the request and in response to the initial refusal. Alternatively one might attempt to show a link to subsequent requests, but as I recall it there was no such attempt.

Of course I may be wrong. Words never likely to be heard in certain other circles.

Incidentally I read yesterday of a cardiologist being refused access to the raw data from the trials of statins. Sometimes it is easy to forget the broader significance of this battle, and the vested interests involved.
 

Large Donner

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Let me be clear - anyone making these claims that we have a conspiracy are themselves conspiracy theorists. What we do is nearly all in the public eye. We explain when asked. Most don't bother asking.
Those who carry out the official conspiracies invented the meme of "conspiracy theories". Its double talk, a way of chainging the very meaning of phrases and words to place into the public consciousness that their is no legal definition of a conspiracy, which is simply two or more people combining to cover up a crime.

This way the legal definition of conspiracy is disappeared in the pubic understanding and instead propaganda can be carried out to the highest level by simply throwing around the "conspiracy theorist" slander at those who point at the original conspiracy.

This is often also used as a way to stop more people joining the "conspiracy theorist side" as it plays on the need for people not to be seen as "mad or crazy as those people who believe the government would do x, y or z".
 
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Large Donner

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I'm pretty sure from seeing some US FOI appeals etc that there is no defense not to release info based on the assumed intent of the person making the request.

I am not sure what the wording is here in the UK over such a refusal but it just seems bizarre that we can have a FOI act whereby the public body can basically say, "what do you want the information for," and then beyond that can even claim they already know why someone requires the info and therefore by default they are not obliged to release it.

Their defense has even moved onto... paraphrasing,

....."they only want the data from a publicly funded scientific trial so that they can evaluate it then critique our conclusions and because there is lots of people who want this info we can use the word campaign to have a negative connotation".

Another use of double talk. First they use the "conspiracy theory" meme which by default can allow for a conspiracy to be carried out whilst falling back on shutting down any critique by disappearing the very notion of the legal definition of a conspiracy.

The second use of double talk is by using the word campaign, as if by some magic, "campaigning" is anti truth. Even if a "campaign" is not the actuality of a number of FOI requests for data etc.

When actually they brainwash people into not realizing in this context they use the word campaign to have negative connotation as many people are stuck in Stockholm Syndrome with the false notion of an appeal to an assumed authority.

And even if there is an organised campaign for truth and data sharing, so what!!!??

What exactly do they think the scientific process is?
 
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Dolphin

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The complainant, for instance, was found to be at fault for being on Phoenix Rising. But PR is not just a discussion group about PACE. It is a mutually supportive forum where people with ME can discuss all matters related to the condition. Are people expected to stay away from such supportive forums if they wish to be advocates?
 

Dolphin

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Of course, this workload could easily be alleviated if QMUL would simply release the anonymised data in its entirety, as a growing number of patients, patient groups, scientists and clinicians have requested. QMUL protest that the FOI requests are still coming in after five years and the implication is that it is time that concerned patients moved on. Yet the point is that the PACE investigators continue to publish papers based on the PACE data and continue to make misleading claims based on these which are then reported in the media to the detriment of patients. PACE is not a thing of the past. It is very much alive and kicking and the misinformation it continues to engender has a negative impact on the lives of many patients.
 

Dolphin

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QMUL argued that ‘there was no overriding public outcry that CFS/ME research or treatments should subjected to such scrutiny’ and that only ‘a vocal minority’ were unhappy, ignoring the fact that over 12,000 people signed the petition requesting the release of the PACE data and the retraction of its claims. The implication from QMUL is that a small group of patients are obsessively picking away at the fine details of the trial, issuing FOI requests in a desperate attempt to find some way to discredit it. The Commissioner seems to accept this perspective and indeed it seems unlikely that he has any idea of the real situation: that very sick patients, sometimes working from their beds, have painstakingly dissected the fine print of the trial to expose a substantial number of often astonishing irregularities and have thereby attracted the attention of, amongst others, investigative journalist David Tuller and Rebecca Goldin, Professor of Mathematical Science & Director of Stats.org, who have both produced detailed and damning critiques of the study. Goldin concluded that the flaws in PACE’s design ‘were enough to doom its results from the start’, while eminent researcher Dr Ronald Davis of Stanford has remarked: ‘I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review’. Patients are therefore requesting release of the data not in a desperate attempt to find minor errors but as final confirmation of the trial’s ineptitude.
 

Dolphin

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Lots of quotable things in this I think. Here's another:
So there you have it. Just to recap, the argument seems to go like this: in spite of the fact that this specific request is not onerous and in spite of the fact that the complainant has not previously made an FOI request, he has been adjudged to be part of a coordinated campaign to discredit PACE (because he has talked to other people about PACE on the internet). Therefore the issue has been judged not on this specific request but on the overall burden of PACE-related FOI requests on QMUL, which are accepted not to be overwhelming but have nevertheless caused ‘disproportionate irritation and stress’ to Prof White and his team and are therefore vexatious. Therefore the request for this important piece of information is refused.
 

Dolphin

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One does wonder how many pages of social media activity they had to plough through to find that quote, and how much burden QMUL placed upon themselves by deciding to trawl through the conversations of patients in that way: a strange thing for an organisation apparently under such a distressing administrative burden to take upon themselves.