The PACE data have been released (9 Sept 2016)

[Yogi]

Good summary of last week

https://twitter.com/i/web/status/774981787915259904

https://sarahatsaje.wordpress.com/2016/09/10/why-pace-trial-is-a-big-deal/

 

[worldbackwards]

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.

Absolutely. It's through following the course of politics and economics since the 2008 crash that I've come to the opinion that nothing ever changes unless the current situation genuinely becomes intolerable for everyone in charge.

It is a common misconception that everyone knows and understands what they're doing, which I think is why people get into conspiracy theories. I think it much more accurate to assume people are simply lazy, stupid and wrong.

 

[J.G]

2) Peer review? What peer review? Were the peer reviewers bribed in any way?

Bribed I think not (risky). Preferential selection of peer reviewers is a possibility. But perhaps no overt foul play was necessary at all, since peer review practices are totally broken, to put it mildly. The Economist wrote a solid article on this a few years back, see here.

 

[Dolphin]

Bleijenberg & Knoop wrote an editorial with the Lancet paper. I've heard it said before that people who write editorials with papers are usually reviewers who offer to write an editorial.
It seems more likely than usual in this case one of them was a reviewer as the peer review was fast tracked so there wouldn't be much time for somebody outside to write an editorial.

Bleijenberg & Knoop are CBT for CFS fanatics.

 

[alex3619]

https://sarahatsaje.wordpress.com/2016/09/10/why-pace-trial-is-a-big-deal/

Nice blog.

 

[alex3619]

I think it much more accurate to assume people are simply lazy, stupid and wrong.

I think this explains maybe 90% of it, when you consider that they are supported by others who are have vested interests, or lazy, stupid or wrong. The other 10% of the time there is something to it, and less than 1% the conspiracy is spot on. Yet if nobody looks even that 1% would get missed.

 

[Dolphin]

Short blog post by Sally K Burch

PACE data: QMUL disclosure under FOI
http://sallyjustme.blogspot.ie/2016/09/pace-data-qmul-disclosure-under-foi.html

 

[picante]

Have you all seen this blog post by @sarah darwins? Warning: it's unsafe to drink anything while you read this. I nearly snorted my tea.
http://forums.phoenixrising.me/index.php?entries/the-dead-trial-sketch.2011/

 

[JayS]

Bleijenberg & Knoop wrote an editorial with the Lancet paper. I've heard it said before that people who write editorials with papers are usually reviewers who offer to write an editorial.
It seems more likely than usual in this case one of them was a reviewer as the peer review was fast tracked so there wouldn't be much time for somebody outside to write an editorial.

Bleijenberg & Knoop are CBT for CFS fanatics.

They sure are.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(02)08577-X/fulltext

(you've seen this, Dolphin, but others may not have. The emphatic claim that they regard CBT as 'curative' in CFS still stands out to me as one of the more outlandish statements made on this issue.)

 

[JayS]

And this is off-topic, a bit, but...just for shitsngiggles...
http://forums.phoenixrising.me/inde...bt-in-me-cfs-compiled-by-tate-mitchell.15184/

 

[sarah darwins]

Have you all seen this blog post by @sarah darwins? Warning: it's unsafe to drink anything while you read this. I nearly snorted my tea.
http://forums.phoenixrising.me/index.php?entries/the-dead-trial-sketch.2011/

Oh, bless you, picante. I needed an agent! (so long as you don't want paying!!)

 

[worldbackwards]

I think this explains maybe 90% of it, when you consider that they are supported by others who are have vested interests, or lazy, stupid or wrong. The other 10% of the time there is something to it, and less than 1% the conspiracy is spot on. Yet if nobody looks even that 1% would get missed.

I agree, I just feel that too often conspiracy seems to be the first port of call these days. I think it's probably that 10% that is the most interesting, and which is where I would lay PACE.

I'd be extremely surprised if Sharpe and co set out to defraud anyone initially, given that they set themselves a protocol that they couldn't beat. I expect the conversation went something along the lines of, "we need change things to demonstrate the power of the treatment", which of course everyone would understand if only they were given the chance, if only they could see!

I doubt they've ever considered themselves to be in the wrong, even when it came to blithely ignoring the massive inflation of their figures ("But we know it's true") or their inability to beat controls ("it was probably the swappers, of course it was"). I suspect that if they're motivated by anything anymore it isn't their careers or some insurance company, but blind rage that some people just won't do what's good for them, which of course they are the exclusive arbiters of.

 

[TiredSam]

I doubt they've ever considered themselves to be in the wrong, even when it came to blithely ignoring the massive inflation of their figures ("But we know it's true") or their inability to beat controls ("it was probably the swappers, of course it was").

I agree with what you wrote, but it should also be pointed out that their complete disregard for the scientific method, which is there to eliminate human bias as much as possible, disqualifies them from calling themselves scientists. If they want to peddle a belief system which their intuitive wisdom tells them must be true, they can join the ranks of homeopaths, astrologers and reiki practitioners.

When you look at the millions of lives they have wreaked havoc on by dressing their quackery up as science, "but we were only trying to help!" just doesn't cut it for me. The road to hell and all that.

 

[worldbackwards]

When you look at the millions of lives they have wreaked havoc on by dressing their quackery up as science, "but we were only trying to help!" just doesn't cut it for me. The road to hell and all that.

It isn't a question of excusing them, it's about knowing your enemy.

 

[trishrhymes]

I agree with what you wrote, but it should also be pointed out that their complete disregard for the scientific method, which is there to eliminate human bias as much as possible, disqualifies them from calling themselves scientists. If they want to peddle a belief system which their intuitive wisdom tells them must be true, they can join the ranks of homeopaths, astrologers and reiki practitioners.

When you look at the millions of lives they have wreaked havoc on by dressing their quackery up as science, "but we were only trying to help!" just doesn't cut it for me. The road to hell and all that.

i agree, TiredSam, I can just about accept that they wanted to prove their pet theory by carrying out a large trial, but their unscientific way of conducting the trial, and their completely unforgivable distortion of the null outcome, is outrageously unscientific.

Looking at the whole sorry saga, I can only see self interest (careers and kudos), medical negligence(ignoring biomedical research and the evidence of harms of GET) and even malice(blame the patient, act the victim, hide the data etc) creeping in.

 

[TiredSam]

It isn't a question of excusing them, it's about knowing your enemy.

I know you weren't excusing them, but even assuming a lack of intention, which may have been fair earlier, is cutting them too much slack at this stage. What you describe may well have been how things started, but when you consider how long it's been going on for and the depths to which they have sunk, it looks to me like at some point along the way they had to make the choice between dealing with legitimate criticism, or going all-in without regard to the well-being of patients. They clearly chose the latter course.

I have always been very skeptical of conspiracy theories, and actually find it quite embarrassing to talk about PACE to non-ME people because I know what I sound like, and what it would have sounded like to me before I got ill. But after the political education I've received since getting ME, I won't be giving the BPS crowd an inch, and nothing about them would surprise me any more.

 

[worldbackwards]

I know you weren't excusing them, but even assuming a lack of intention, which may have been fair earlier, is cutting them too much slack at this stage

Have you ever met a true bastard who was prepared to admit to the havoc that they wreaked, especially to themselves? People aren't pantomime villains, we can usually find an excuse for pretty much anything. It's probably what keeps them going.

 

[Large Donner]

If there is no conspiracy that means by definition that there has only ever been one person behind the insurance lobbying, the countless BPS organisations set up, clearly outlined refusal off data which hides the truth behind a medical treatment causing potential harm, the SMC etc etc.

I think the "lack of conspiracy claim" is disproved in itself by the clam that "one or more persons never set out to......". At the point whereby it was obvious that the claims were wrong, being spun, manufactured that in itself is the very definition of a legal conspiracy especially when one takes into account the admittance of the SMC of their orchestration of claims of harassment etc etc which they admit to being behind and getting into the national press.

How anyone can claim that no two people have ever conspired for a certain outcome short or longterm, I fail to see, as it would mean that no two people at any time had attempted to obfuscate spin of hide the facts of the BPS claims going back 30 years.

One simple example is the fact that many of us have witnessed QMUL, for one make, one illogical refusal under FOI after another under Peter White and the backing of Peter White simply because the whole fiasco of the PACE trial has been a monetary and fraud scientific fraud.

They took money from the public purse to commit this fraud. Its irrelevant "at what point they realized they were wrong" in terms of claiming there is no conspiring therefore making it a conspiracy because it is impossible that up until now they can make the claim based on the shortfalls of the PACE trial that they simply got it wrong.

At what point when QMUL hired lawyers at the expense of £250,000 after Peter White has been given them one reason to refuse the data after another that failed to make logical sense can it be claimed that this is one person acting alone to cover up fraud.

30 years of fraud and no two people every sat in a room together to plan out any kind of strategy? That in itself would be unscientific, scientists work in teams.

The PACE trail is a fraud on the public purse more than one person was involved, more than one person span out lies to the media, more than one person was involved with data sharing refusal, more than one person is involved in the BACFS, more than one person admits to manipulating claimed incidents which were put out in the media as physical attacks on their person in public, more than one person is involved in the SMC.

That is the very definition of a legal conspiracy.

Negligence is no defense in legal terms and its quite obvious that even if it was, that a monkey can see the flaws in the PACE trial and more than one person has worked on the PACE trial and more than one person has been involved in the attempted cover up of the dangers to the public known or unknown.

Not only that but all of those people work together, go to the same meetings and belong to many of the same organisations many of which they set up themselves.

 

[TiredSam]

Have you ever met a true bastard who was prepared to admit to the havoc that they wreaked, especially to themselves? People aren't pantomime villains, we can usually find an excuse for pretty much anything. It's probably what keeps them going.

That may well be, but I'm going to be booing and hissing and shouting "behind you!" all the way through what remains of their sorry performance, and when they finally get their comeupance I'll be finishing off my popcorn and joining in the singalong.

I don't care if they admit to their evil or repent, I just want to see them booed offstage with widow twanky's boot up their arse.

 

[worldbackwards]

I don't care if they admit to their evil or repent, I just want to see them booed offstage with widow twanky's boot up their arse.

I'm a bit bored with my rage, to be honest. I get it out and check it's there from time to time but it just feels a bit old these days. I just want to beat the fuckers so I can die happy.