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Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

Mrs Sowester

Mrs Sowester

Senior Member
Messages
1,055
Tuha said:
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.
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Please don't think I'm defending them - I absolutely agree they are responsible for a whole mountain of harm and their personal world views don't absolve them of their responsibility. But I don't believe they will be called to account unless clear evidence of wilful misconduct or fraudulence is uncovered and pursued legally.
There is a long history of diseases that were viewed as psychosomatic until new evidence came to light; MS, Crohnes, AIDS and stomach ulcers to name a few. Was anyone ever called to account for the poor treatment of people with these diseases after the biological cause was discovered?
They will defend themselves with the argument that they did the best they could with the scientific knowledge available at the time.
 
W

worldbackwards

Senior Member
Messages
2,051
DWP said:
"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."
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This is probably the most blatant example of policy based evidence that I've seen.
 
T

Tuha

Senior Member
Messages
638
Flash of Hope said:
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!]
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I know that it would be difficult to prove the harm. But they are especially guilty because they modifyied the results of PACE study, they did their own misinterpretations of the results which they know were incorrect and the science will prove soon that to push the patients for physical activity is the worst. So they are completly guilty in my eyes. There are only 2 reasons - they pushed their interpretation because they wanted to make profit from it - so they are completly guilty or they are totaly incompetent and really bad scientists - but here they are also guilty because they didnt listen to patients community and experts. Their behaving is totaly unprofessional because if you want to do the best for the patients (and they are paying also from our taxes) then you dont hide the data, you try to cooperate and so on. They are completly guilty and there is no excuse for them. They have to pay for it. It´s still unbelieveble that we have to fight with such things in the 21st century!!!
 
T

Tuha

Senior Member
Messages
638
Mrs Sowester said:
Please don't think I'm defending them - I absolutely agree they are responsible for a whole mountain of harm and their personal world views don't absolve them of their responsibility. But I don't believe they will be called to account unless clear evidence of wilful misconduct or fraudulence is uncovered and pursued legally.
There is a long history of diseases that were viewed as psychosomatic until new evidence came to light; MS, Crohnes, AIDS and stomach ulcers to name a few. Was anyone ever called to account for the poor treatment of people with these diseases after the biological cause was discovered?
They will defend themselves with the argument that they did the best they could with the scientific knowledge available at the time.
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no worry i think no ME patient will defend them. I dont know all the history of other sicknesses. But I think there were all the signals that they were wrong and they didnt want to accept it. And what is modification of the result, bad interpretation of the results (if you harm someone because you claim to be a proffesional you are responsable for it) which you force like the best way to treat ME patients, bad communication with patients, no cooperation with ME experts and I could continue. There cannot be excuse for these people. Many patients already died and suffered because of these psychiatrists and also other medical community
 
Cheshire

Cheshire

Senior Member
Messages
1,129
Retraction watch:

A tribunal in the UK has rejected an appeal by Queen Mary University of London, who sought to reverse a previous order that they release data from a controversial 2011 paper in The Lancet about chronic fatigue syndrome (CFS).
The decision is one in a long series of judgments about the so-called PACE trial, which reported that two treatments — known as cognitive behavioral therapy and graded exercise therapy — helped alleviate the symptoms of the condition. But ever since The Lancet article and follow-up papers have been published, patients and critics have questioned the conclusions and clamored to see the raw data.
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http://retractionwatch.com/2016/08/...controversial-chronic-fatigue-syndrome-study/
 
eastcoast12

eastcoast12

Senior Member
Messages
136
Location
Long Island ny
As much as I am totally excited, happy, etc, I am fucking pissed man. How many newspaper articles, journal articles and other various scientific/non-scientific outlets reported on the claims of death threats and threats of violence against researchers by us. The whole god damned thing was totally fabricated by the researchers and the school. It was a lie that was reported to the media to foward their agendas the harm of patients. That sounds illegal. I wish there was some legal recourse we as a community could take (maybe there is).
It's unbelievable how weak QMUL's defense was it really makes you wonder what they're hiding. I can not wait to see what gets dug up once people start going through the data.
 
C

Chrisb

Senior Member
Messages
1,051
@Wildcat

Thanks for the confirmation.

There is an interesting ruse at play here. Pretend all funding came from the MRC and it appears that the sole interest is in medical matters and the health and recovery of the patient.

Admit that funding came from the DWP and the interests involved look entirely different.

I had forgotten when the DHSS was split, but it appears to have been 1988. DWP came into being in 2001.

The information in the judgment would have come from the evidence provided to the Tribunal. It is not the Tribunal's error.
 
K

Keith Geraghty

Senior Member
Messages
491
Given Prof. White has worked for the DWP on disability assessment manuals and protocols , the issue of conflicts of interest might arise, as the trial is part funded by the DWP - one could argue the DWP is part funding their employee, if Peter White continued to work for the DWP during the trial.

I wonder if anyone has explored this with the DWP or Prof White? Did Prof. White work for the DWP at any stage during the trial and pre-trial when the funding was being awarded? this would be an abvious question to ask the DWP -

the issue of funding trials with tax payers money to test treatments that may change health policy and guide sickness benefits is of such public importance there would be a strong need to maintain independence and have fully independent researchers assess efficacy
 
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Mark

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Deepwater said:
UK universities are generally pretty hard up surely far too hard up to be wasting money in this way...
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Are you sure about that? QMUL's latest published financial statement gives a balance sheet at 31 July 2015 (on p.22) stating both total funds (reserves) and net assets of £332m. Surpluses (income minus expenditure) for 2014 and 2015 are stated on p.21 as £17m and £19m respectively.

I can think of organisations that are more hard up than QMUL.
 
Seven7

Seven7

Seven
Messages
3,444
Location
USA
Mrs Sowester said:
They will defend themselves with the argument that they did the best they could with the scientific knowledge available at the time.
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One thing is what evidence you have and another is to tamper with evidence. They need to bring to justice and malpractice. The message has to be clear. There is a cover up effort way to intentional to allege ignorance.
In my eyes:
Crime against humanity (all the psy wards abuse due to this charlatans).
Malpractice
Temper with evidence and public funding manhandling
abuse of power
ME patient defamation of character
.............. The crime list is big.
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
eastcoast12 said:
How many newspaper articles, journal articles and other various scientific/non-scientific outlets reported on the claims of death threats and threats of violence against researchers by us. The whole god damned thing was totally fabricated by the researchers and the school. It was a lie that was reported to the media to foward their agendas the harm of patients. That sounds illegal. I wish there was some legal recourse we as a community could take (maybe there is).
Click to expand...

When you impugn one person's reputation without proof, it's libel, and you can sue. When you do that to an entire population, it's an '-ism': racism, sexism, ableism. Bias.

I don't know anyone has been successfully sued for painting an entire group of people as violent malcontents without reasonable evidence, and doing so in the public view.

Presumably these scientists knew no one had physically threatened them. I imagine they felt bad, even attacked, that their research was coming under such public scrutiny. I imagine that was very uncomfortable, and I don't begrudge them that feeling: it has to be awful. At the very least, it's an incredibly public shaming.

But here's where we run into a problem. Feeling threatened and being threatened are not the same thing. You don't get to claim they are the same thing, much less in public. ("I feel unsafe" is not equivalent to "someone has threatened to hurt me". That's not the same as claiming to be threatened or saying you feel safer in a war zone.)

eastcoast12 said:
It's unbelievable how weak QMUL's defense was
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I really did believe that someone must've threatened them. I mean, there are millions of PWME worldwide -- there have to be some who are a bit off their game, especially if they've been abused by the medical industry. But when it came down to it, they had nothing.

Let's reframe that more clearly.

In order to protect their reputation, these researchers mischaracterized people they'd already mischaracterized as mentally ill in order to paint them as mentally ill and violent.

Perhaps the BPS school has been internally influenced by this idea that your emotions shape your reality, but emotions are not the same as facts. You can't claim that because you were made to feel bad, you have been put into physical danger.

That they tried to do this is no more or less crazy-mindblowing than the rest of it, I suppose.

Can you go any lower?

Kati said:
Has anyone noticed how eerily quiet The Lancet has been through all this? Not a peep!
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If I were their editor, I would backpedal as fast as I possibly could.

Mark said:
https://pacetoday.com.au/scientists-inventing-invisibility-cloak/
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....I'll refrain from piling on to the previous Harry Potter metaphors. ;)

-J
 
Nielk

Nielk

Senior Member
Messages
6,970
l
JaimeS said:
When you impugn one person's reputation without proof, it's libel, and you can sue. When you do that to an entire population, it's an '-ism': racism, sexism, ableism. Bias.
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When you can show a cause and effect of harm to a group of people, you can start a class action lawsuit. This is done all the time in the US.

There are class action suits for drugs that have unexpected adverse effects. There are class action lawsuits for malpractice.

As long as you can prove that it caused harm to the health of people involved - which in this case, the fact that their cover up of information has caused the recommendation of harmful treatments us really relevant.

Even after the knowledge of the harm has been evident, they continued the cover up. This is a crime and they should be held responsible for it.
 
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