TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

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Chrisb

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I like to think of myself as a fair minded man. Others may not concur.

I do think it would be a shame if at this time we fail to remember the unmoved mover, who skulked off to his lair amongst the fastnesses of the Principality to mind his hoard. We should insist that he be allowed his time on the red carpet along with the others of the Gang of Five. No-one should be deprived of their due share of opprobrium.

It is such a shame that we seem not to know the names of so many others who must have contributed, slaving over a hot desk in Whitehall, Leeds or wherever. All must have awards, in line with the standards of the times.

But please, no abuse.
 
Snow Leopard

Snow Leopard

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I think the PACE trial used the latter statistical model.

paranormal distrubution.jpg
 
TiredSam

TiredSam

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Snow Leopard said:
Seriously though, please don't joke about abuse. Online harassment and abuse is a serious thing and we don't want to be associated with that here.
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We are not associated with it here. It is the ridiculous attempts of the psychoquackers to associate ME patients with online abuse that is the subject of the joke. They've tried it before as a distraction, but produce no evidence of it. It's getting to be a predictable device they use whenever they start to feel the heat about factual matters.

As far as I'm concerned, until I see evidence of online abuse rather than hints of it from people I don't trust, there is no case to answer.
 
Snow Leopard

Snow Leopard

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TiredSam said:
As far as I'm concerned, until I see evidence of online abuse rather than hints of it from people I don't trust, there is no case to answer.
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Some people believe it is not possible to bully those who have power over you (hitting up so to speak). But it is still violence and it doesn't help our cause at all. Demanding "evidence" doesn't help either. Regardless of how uncommon it is, it isn't helping our cause.
 
TiredSam

TiredSam

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Snow Leopard said:
Some people believe it is not possible to bully those who have power over you (hitting up so to speak). But it is still violence and it doesn't help our cause at all.
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It isn't violence if it never happened.

Asking to see the evidence (and there must be some in this particular case - email copies, screenshots, phone records, complaints to the police) is a way of helping decide whether the complaint is legitimate and should be taken seriously.

Until the complaint is shown to be legitimate, and it is for the complainant to show that it is, then we should not regard ourselves as having to defend ourselves in this matter, prove we haven't done it, that it isn't associated with our cause, or take on the task of warning other people not to do it. I just don't accept the role that the supporters of the PACE trial are trying to assign to us in this regard.

I quite agree that online abuse is serious and never acceptable.
 
Wildcat

Wildcat

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But no one has actually seen the so called "abuse" on social media that the PACE Trial authors say they are receiving in the last few days. If its on social media then its in the public sphere - where is it? Has anyone seen it? Lets see how bad it is.

Fiona Fox of the Science Media Centre, who says she orchestrated the 'harassment' media stories in 2011 and 12, also is on record stating that the worst of the claimed harassment of scientists was Freedom of Information requests (some about the PACE Trial) and Parliamentary Questions. So lawful actions were conflated with, and so constructed as, 'harassment'. Patients writing to the National Research Ethics Committee (as invited to do so by the NREC) to give reasons why the NLP Lightning Process trial on children (Dr Esther Crawley's SMILE Trial) should not be given ethical approval....... constructed as 'harassment' by the SMC and Professor Wessely.

No one condones abuse or harassment.

But the PACE Trial authors and Prof Wessely, and their medical/media supporters, have a history of playing the victim in the national media at critical points in time, that co-incide with landmarks of ME bioresearch, the publication of the ICC, material that demolishes their research and policy.

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Effi

Effi

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Snow Leopard said:
Some people believe it is not possible to bully those who have power over you (hitting up so to speak). But it is still violence and it doesn't help our cause at all.
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TiredSam said:
Asking to see the evidence (and there must be some in this particular case - email copies, screenshots, phone records, complaints to the police) is a way of helping decide whether the complaint is legitimate and should be taken seriously.
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I agree that any kind of abuse should not be tolerated, online or in the real world. They claim this is happening on social media, but why has nobody seen it then? My impression is that they are using their abuse accusations as a shield to bully us even further. Pretty clever bullying tactic...
 
C

Chrisb

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It is said that a good strategist will always defeat a good tactician.

It seems clear that the SMC does not like fighting on two fronts. The tactics seem to be muddy the waters, divert all attention to false abuse beliefs. Their strategy must be to play a long game. Eventually exhaustion will set in, people will move on to other topics, and the BPS and those behind them can continue as before. It has always worked before. But the past is not necessarily a guide to the future.

One should always do what the opponent least wants. This means continue the attack on two fronts. More influential figures have taken up the attack on the scientific grounds. There seems no reason why we should not divert attention from the more serious matter of the defence of the flawed "science". Provided that it is done lawfully; and there is no reason to suppose that it has not been.

The BPS might eventually realise that there is a world outside the Institute of Psychiatry and that that world has moved on without them. It seems to really gall them that mere patients (or those who should be patients) have the temerity to criticise knights of the realm. Sad really. After all those years living with the knowledge that "ME is simply a belief-the belief that one has an illness called ME", as someone once said. Now that's what I call abuse.

Just where this will leave the DoH and DWP when everything falls apart is anyone's guess. That will be the 25 year plan gone. This no doubt accounts for the desperation of the spin. How will they tell the Treasury. This may all be fanciful, but I think government would be negligent if it did not have long term plans. As they don't tell us what they are all we can do is make judgments based on their behaviour.
 
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leela

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More bad science: Repeatedly define, dismiss and slander an entire patient population by the behaviour of one or two vocal (and deservedly) angry people.
Enough already. Move along now, fragile published scientists. Grow a pair.

If you are performing science, expect your science to be rigorously examined.
If you are performing bad science, expect your science to be rigorously examined and take it like a man.
 
A.B.

A.B.

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I imagine the story behind the PACE trial went like this: many years ago, a few inflated egos convinced themselves they knew what CFS was. After all, no biomarkers means it was all in the head, so the only thing left to do was to find out the details. They never doubted their own grandiose intuition and quickly decided they knew what the problem was. The science to test the hypothesis was never done. Careers slowly grew around these beliefs. The therapy was considered infallible, if only patients were motivated enough. But to acquire the badge of honor that says "evidence based" required a few formalities in the form of a clinical trial. So the FINE and PACE trials were set up. When the data started rolling in, they panicked and realized their hypothesis was doomed. The only thing left was to prolong the inevitable for as long as possible. Fortunately nobody except the patients seemed to notice the massive manipulations that had been required to give the superficial appearance of a positive result. Then one of the egos came up with the idea of a smear campaign against patients in the media. "I have just the right contacts for that" he said...
 
WillowJ

WillowJ

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Snow Leopard said:
Some people believe it is not possible to bully those who have power over you (hitting up so to speak). But it is still violence and it doesn't help our cause at all. Demanding "evidence" doesn't help either. Regardless of how uncommon it is, it isn't helping our cause.
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Some definitions of racism and other forms of discrimination require power "for it depends on the ability to give or withhold social benefits, facilities, services, opportunities etc., from someone who should be entitled to them, and are denied." [1]

However it's still possible to harass powered people, and I agree that this is not something that should be done or encouraged (though I get that people were just blowing steam, regarding unbalanced accusations--they can slam us all they like and essentially deny medical care we can't react? Not fair.). Still, harassment is unethical and doesn't help us.

Questioning the validity of some small instance of bad behaviour is probably not a good route to take. However we don't need to let them get away with letting them use a tiny bit of bad stuff to paint an entire movement of valid criticism falsely as harassment. We could prove them wrong by staying on target with sensible criticisms. And occasionally point out that they are muddling together these very separate things.

We could speak out strongly but avoid name-calling and anything else that seems dubious or is threatening in any manner other than pointing out, for example, the poor quality of their work. Most people who do shabby work fear repercussions at work. Not our fault. They should have done better work to begin with. Or taken appropriate steps when it dawned on them they made a mistake. Smoke, mirrors, and blaming the patients and/or their families and/or the charities is not "appropriate steps", just to be clear.
 
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