Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

[Sean]

A procedural quibble, a procedural quibble,
My kingdom for a procedural quibble

 

[Mrs Sowester]

What I dont understand why are they behaving like this? Shame on them. What they will do when we will finally prove that this PACE misery study and GET make a big harm to the patients? They will just say sorry? But this will not be enough. The only excuse for me would be to invest all their money for ME biomedical research. And this we should demand after everything is proven.

I'm certain they truly believe they are right. They are so entrenched and invested in their beliefs that they can't see the wood for the trees.
As @TiredSam alluded to in a previous post their beliefs could be seen as a tad paranoid!
People who are attracted to the psychiatric and psychological professions are, in my experience, usually people with a history of personal emotional pain or who have maladaptive behavioural traits where they believe they have a duty or right to correct the emotional pain they perceive in others.

 

[natasa778]

QMUL has shared data from the PACE trial with other researchers only when there is a confidentiality agreement in place ...

Then why didn't they simply ask from whoever requested their data to arrange/sign confidentiality agreements, so that patients are not identified?

Or could they possibly be subconsciously referring here to confidentiality regarding other matters? (for example ' should my analysis of your data reveal anything dodgy I solemnly swear not to reveal it' type thing)

... and an agreed pre-specified statistical plan for data analysis.

This is a teeny bit patronising, innit? 'Agreed'? 'Pre-specified'? Your are a good researcher and we'll share our data with you only if you agree to play by our rules and you do exactly what we say, right?

 

[ukxmrv]

I wonder if the money to fund the case comes from insurance that the university or the individual researchers have. When a doctor (as an example) is sued there is normally an insurance policy that covers their expenses in the UK. This is often through the hospital they work for or the doctors professional body.

 

[natasa778]

I know, it is speculation but I can't help wondering the same thing. UK universities are generally pretty hard up surely far too hard up to be wasting money in this way - but financial arrangements with private industry can muddy the waters. At the risk of sounding vexatious, I wonder if an FOI request could clear this matter up. If, just if, these appeals are being funded by an undisclosed third party it is something of which any future tribunal ought to be aware. Mind you, I imagine clever accounting could obfuscate the link anyway.
Hope I don't sound like an activist....

It would likely be listed under 'UK industry and commerce' income, see p28 of their latest financial statement http://www.finance.qmul.ac.uk/docs/168636.pd . But as an exempt charity they are probably not required to submit detailed accounts to Charity Commission. The legal costs will probably be listed in the 'Professional and other fees' basket, p30

Hope I don't sound like an activist....

 

[sarah darwins]

I know, it is speculation but I can't help wondering the same thing. UK universities are generally pretty hard up surely far too hard up to be wasting money in this way - but financial arrangements with private industry can muddy the waters.

For anyone who enjoys things like financial statements (they make my eyeballs bleed) QMUL's are available here:

http://www.finance.qmul.ac.uk/statements/index.html

A quick glance at the 2014/15 one suggests it's a £380 million / year enterprise, so well over half a billion of your US dollars. Grants and research contracts make up more than half of that.

 

[Tuha]

I'm certain they truly believe they are right. They are so entrenched and invested in their beliefs that they can't see the wood for the trees.
As @TiredSam alluded to in a previous post their beliefs could be seen as a tad paranoid!
People who are attracted to the psychiatric and psychological professions are, in my experience, usually people with a history of personal emotional pain or who have maladaptive behavioural traits where they believe they have a duty or right to correct the emotional pain they perceive in others.

Yes, but they are responsible for their behaving and steps. They are not amateurs but professionals and scientists. They have to be responsable for their harms and unethical behaving. The years patients say that the GET make them harm but they still push this theory. If I would be a scientist and there will be such a problem I would try to talk to patients, other scientists from other field and doctors and GPs and try to solve the problem in the best interest of patients.
If you push a theory which doesnt have any impact on people then I will say ok, but if you influence a lot of people negativly for years you have a big responsibility and you cannot say on the and well we were just wrong. Let´s forget about and we will move further. You have to carry the consequences. I think in the future we should ask excuses from the psychiatrists and large financial compensation which we could use for ME activities.

 

[sarah darwins]

@natasa778 - sorry, our posts sort of crossed.

 

[Flash of Hope]

The mentality that they can still do whatever they want is perverse, under the pretence of whats best for trial participants and researchers. Its nauseating.

I would like to hear PACE authors explanation how holding data from bona fide researchers is best for science? We have Ronald W. Davis, Jonathan Edwards, James C. Coyne, David Tuller + 40 more signatories in open letter. This just proves that it is not about science or benefit to everyone.

 

[Dolphin]

One response:

Brilliant news - fingers crossed they dont go to second tier.

Disgraceful waste of uni funds - as an alumna of Queen Mary college when it was part of London uni I am appalled they waste it like this, then have the cheek to ask alumni for donations!

 

[Sasha]

One response:

Who said that?

 

[Living Dead]

Statement from Queen Mary University of London (QMUL):
...
The PACE trial was carried out according to the regulatory framework for UK clinical trials, which aims to ensure that trial participants can be confident that their information is only ever used according to their consent.

The participants gave consent to the original protocol, not the one with modified outcome measures. So they already used the information in a way that was not according to the consent.

 

[Dolphin]

Who said that?

A patient in an ME discussion group.

 

[Chrisb]

I was surprised at the statement on Page 18 of the judgment that the PACE trial was funded by a grant from the MRC .Have I been wrong for many years in believing that, in a unique arrangement,(EDIT-part of the) funding was provided by the DHSS, or was the money channelled via the MRC?

Given the force of the ruling (and the exceptional comments regarding the major witness for QMUL) it may be of lttle significance, but it may be that in the event of an appeal clarification would be appropriate.

It has always seemed the most damning part of the affair that the results so closely accorded with the interests of the DHSS, or whatever it called itself at the time.

 

[Dolphin]

For those of us who aren't lawyers, what would a "point of law" look like in a case such as this?

I know it isn't your intention, but I'm not sure we should be revealing any ideas that QMUL could use.

 

[Art Vandelay]

A quick glance at the 2014/15 one suggests it's a £380 million / year enterprise, so well over half a billion of your US dollars. Grants and research contracts make up more than half of that.

Bureaucrats and bureaucracies virtually never apologise or admit fault and they always cover for one another (regardless of what they think of one another in private). It takes a large amount of public outrage and perhaps an order from the government for them to finally admit that they were wrong.

Why? Well, they don't want to jeopardise the flow of the taxpayer money into their empires. They don't care that the BPS crowd are pseudo scientists who are pursuing some very dodgy research. They'd even be supportive of an Astrology Department that claimed to predict the future if it guaranteed the university lots of grants and subsidies.

My gut feeling is that if the data is eventually released (they will stall and delay for as long as possible to keep the gravy train going... perhaps they'll blame 'database issues'), their next tactic will be to try and smear and sideline anyone who tries to publish any analysis.

 

[Snowdrop]

Their statement smacks of disrespect. Its more like a response to an initial foi request, not an official court ruling. The mentality that they can still do whatever they want is perverse, under the pretence of whats best for trial participants and researchers. Its nauseating.

How low can you go QMUL?


B

"This has been a complex case and the Tribunal’s decision is lengthy."

(We employed every argument we could think of, and much to our frustration the Tribunal has comprehensively rejected them all.)

"We are studying the decision carefully and considering our response, taking into account the interests of trial participants and the research community."

(We are going to go through the decision with a fine toothcomb, looking for a point of law - any point of law - we can appeal on. As we do so we will continue to pretend that we are doing this to defend the rights of trial participants and the research community, rather than desperately attempting to protect our own personal and institutional prestige.)

My thanks to @Ben Howell and @Stewart for speaking my mind. I'm not so good at it any more.

Yes, but they are responsible for their behaving and steps. They are not amateurs but professionals and scientists. They have to be responsable for their harms and unethical behaving. The years patients say that the GET make them harm but they still push this theory. If I would be a scientist and there will be such a problem I would try to talk to patients, other scientists from other field and doctors and GPs and try to solve the problem in the best interest of patients.
If you push a theory which doesnt have any impact on people then I will say ok, but if you influence a lot of people negativly for years you have a big responsibility and you cannot say on the and well we were just wrong. Let´s forget about and we will move further. You have to carry the consequences. I think in the future we should ask excuses from the psychiatrists and large financial compensation which we could use for ME activities.

That would be the reasonable and responsible thing to do. You are a good person.

I think of it this way--they treat their jobs like a criminal lawyer might. Is the client guilty? Doesn't matter the job is to defend them. Similarly I think that the BPS group is beholden to industry--they have certain agreements and there is no way out defending that position is now just 'the job'. I also think that is what is driving the vitriol toward patients --the fact that we are not just laying down and taking it is making their lives somewhat less exceptionally pleasant then they could be. Nasty, filthy, ungrateful (some more severely ill thanks to promotion of GET) patients.

 

[Wildcat]

.
Freedom of Information request about why the DWP funded the PACE Trial (with the DWP response). In my view the DWP response is pure Biopsychosocial ideology a la UNUM.

"We believe that the findings of the trial will contribute to the
continuingly growing evidence base, which informs the development of
health and work related policy, policy based on the large body of
evidence showing that work is good for physical and mental wellbeing and
that being out of work can lead to poor health and other negative
outcomes."

The "previous Departmental Chief Medical Advisor" referred to was Prof Mansel Aylward.

.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




https://www.whatdotheyknow.com/request/part_funding_of_the_pace_trial_b

Dear Department for Work and Pensions,
Please could you explain why this department was involved in part funding the recent PACE trial into the use of CBT & GET on ME/CFS sufferers?

How many other studies, with regard to particular illness' has the DWP been involved in with funding prior to this?

If this is the first study that the DWP has helped to fund, why this trial?

Has the DWP a particular agenda with regard to ME/CFS such as disregarding the WHO classification of it being a NEUROLOGICAL disease?

Yours faithfully,

D.Benyon

~~~~~~~


.

Dear D Benyon

Thank you for your Freedom of Information request received on 2 March
2011. You asked:

'Dear Department for Work and Pensions,
Please could you explain why this department was involved in part
funding the recent PACE trial into the use of CBT & GET on ME/CFS
sufferers?

How many other studies, with regard to particular illness' has the
DWP been involved in with funding prior to this?

If this is the first study that the DWP has helped to fund, why
this trial?

Has the DWP a particular agenda with regard to ME/CFS such as
disregarding the WHO classification of it being a NEUROLOGICAL
disease?'

I have answered each of your questions in turn:


Please could you explain why this department was involved in part
funding the recent PACE trial into the use of CBT & GET on ME/CFS
sufferers?
If this is the first study that the DWP has helped to fund, why
this trial?

The funding was agreed by a previous Departmental Chief Medical Adviser,
who supported PACE due to his combined expertise and academic interest
in this area of work. In his role as Chief Medical Adviser he felt it
reasonable to support this trial, particularly as when the trial was
initially being developed, consideration was given to exploring the use
of a five point measure of work and social adjustment, which would look
at employment and social outcomes for people taking part in the trial.

Additionally, one of the secondary measures considered as part of the
trial, was the impact that the trial would have on ability for
employment and study.

We believe that the findings of the trial will contribute to the
continuingly growing evidence base, which informs the development of
health and work related policy, policy based on the large body of
evidence showing that work is good for physical and mental wellbeing and
that being out of work can lead to poor health and other negative
outcomes.

How many other studies, with regard to particular illness' has the
DWP been involved in with funding prior to this?

We are not aware of any earlier or subsequent similar trials that have
been funded by the Department.

Has the DWP a particular agenda with regard to ME/CFS such as
disregarding the WHO classification of it being a NEUROLOGICAL
disease?

The Department fully recognises that ME/Chronic Fatigue Syndrome (CFS)
has a wide spectrum of symptoms and can be a severely debilitating
condition.

If you have any queries about this letter please contact me quoting the
reference number above.

Yours sincerely,

DWP Central FoI Team

show quoted sections

.

 

[Flash of Hope]

Yes, but they are responsible for their behaving and steps. They are not amateurs but professionals and scientists. They have to be responsable for their harms and unethical behaving. The years patients say that the GET make them harm but they still push this theory. If I would be a scientist and there will be such a problem I would try to talk to patients, other scientists from other field and doctors and GPs and try to solve the problem in the best interest of patients.
If you push a theory which doesnt have any impact on people then I will say ok, but if you influence a lot of people negativly for years you have a big responsibility and you cannot say on the and well we were just wrong. Let´s forget about and we will move further. You have to carry the consequences. I think in the future we should ask excuses from the psychiatrists and large financial compensation which we could use for ME activities.

I agree with you, but I will eat my hat if this happens. Its not impossible, but so unlikely. Look at this case Mr Matthees & IC vs. QMUL. This is clear, cut and dried case of information request based on FOIA and to release or not to release. It took 2.5 years to get to this point and we are not done yet.

Now psychiatry is matter of opinions and interpretations + some statistics, brain imaging, drugs, blood tests. But the opinions and interpretations are the most important part. Showing harms that come from PACE authors actions is incredible difficult, gauging and quantifying them impossible.

Common sense tells everyone who has one, that harm was done and there should be consequences but proving them in scientific let alone in legal context is something I have grave doubts if it possible.

I think best we could ask would be have comprehensive review of psychiatry's history of malpractice and what could be learned from it and what changes need to be made. A few examples:

• Firbromyalgia had, at least in my country, identical course as ME/CFS is having now. Nothing learned from here, patients were treated with same belittling and hostility.
• 1800-1913 General paresis of the insane
• 1930-1960 Asthma
• Probably many more...

Personally I'm horrified when I read ICD-10 F45.3 codes. There can be psychiatric patients within some of these conditions but how can you be sure? As there is immense harm done to patients who do have genuine physical condition which is poorly understood, contested, under diagnosed, rare, not yet found in science. There should be ban to make new psychiatric code or diagnosis before somatic science has done everything possible to investigate the matter at hand.

I have personal experience that you don't come back form psychiatry. Many times you have been (cursory) inspect by neurologist or endocrinologist etc. and then you get referral to psychiatry "just to check that side". Problem then is that psychiatry likely can't and won't prove you don't have have mental illness and to get back to neurologist or endocrinologist psychiatrist need to have suspicion to send you there, but they are just general practitioners + psychiatrist training and if neurologist didn't find anything (in cursory inspection), then thinking goes, there is nothing there so it must be in head.

[There might be some typos here. I'm quite blind to them, as I'm not native in English. Please ask if in doubt!]

 

[ballard]

Congratulations to all involved. What a great day!