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The PACE data have been released (9 Sept 2016)

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Criminality in the UK requires mens rea (intention) and actus reus (an actual act or omission). You have to have both.

This means that people who intend to hurt someone or something but don't actually do it, they aren't criminals (ie thinking how nice it would be to brain the noisy neighbour isn't criminal, until you actually do it).

Also means that people who hurt someone unintentionally aren't criminals (for example if I dropped a brick on your foot - it would be an accident).

Of course that doesn't mean that the brick dropper can't be indicted for something else, like negligence for the brick dropping etc.

So I think they can't be done as criminals, because they didn't intend to hurt anyone and had measures in place for what to do if people deteriorated. Also it's a medical trial, so there are risks inherent in that.

Mens rea just means mental state, it doesn't have to be intention. You don't have to prove intention for manslaughter, recklessness will do. Negligence will do for other crimes. There are even some crimes of strict liability without a mens rea where you don't have to prove any mental state, eg possession of drugs (this was true when I studied law in 1984, I don't claim to be current).
 

Chrisb

Senior Member
Messages
1,051
I am interested in what we can prove, not suspect. I want actionable evidence.

With respect, there is no point in regarding a subject as being of valid interest only at the point when it can be proved. First you have to suspect, and then to investigate.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Not sure if this has been posted elsewhere, but as I was drinking my morning coffee just now a little bird told me that a (reliable) little bird told them that Prof Peter White retired from his clinical practice the day before the data was released.

I guess that he is now concentrating entirely on his 'research' and the defence of PACE.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
With respect, there is no point in regarding a subject as being of valid interest only at the point when it can be proved. First you have to suspect, and then to investigate.
To be actionable it has to be something we can investigate. Investigating is an action. We need a path, a clear goal. If something were already proven we would not be discussing, we would doing something about it, as in advocacy.

Malcolm Hooper compiled a detailed document in Magical Medicine, demonstrating a huge number of questions and implications. To date its still largely ignored except by us. Past questions and findings have been ignored. Currently the questions raised by some leading scientists and investigators are being ignored. We need to find things where we can make a difference. We can highlight non-answers though.

We have decades and thousands of pages of suspicions and implications. We also have the recent findings from PACE. Those are worth pursuing. New questions need to be asked. In the meantime we can add a tiny bit of political pressure with petitions etc.

I have been having these discussions for about seven years now. There is new research, new advocacy, new results, but old claims have not advanced much in a long time. The reanalysis of PACE by the authors, and the release of data, is where new action might come from.
 

Chrisb

Senior Member
Messages
1,051
The reanalysis of PACE by the authors, and the release of data, is where new action might come from.

This would certainly provide a new focus of attention. The apparent discrepancy between the former figures and the new ones is sufficient to merit the attention of the least cynical.

It would seem that the time period in need of examination would be that between the early provisional findings coming in and the decision to change the protocols. Does anyone know when this is likely to have been and whether any documents are in the public domain regarding the reasons for the alterations to the protocols. I don't recall having seen much about this.
 

worldbackwards

Senior Member
Messages
2,051
It would seem that the time period in need of examination would be that between the early provisional findings coming in and the decision to change the protocols. Does anyone know when this is likely to have been and whether any documents are in the public domain regarding the reasons for the alterations to the protocols. I don't recall having seen much about this.
I remember David Tuller saying something about this, how it happened round about the time the FINE results came in, when it was becoming apparent that things weren't going well. Don't ask me to wade back through all that again though. :)
 

Yogi

Senior Member
Messages
1,132
Great discussion between @alex3619 and @Large Donner pursuing the PACE trial legally.

I agree with @Large Donner that we really need to gather all the evidence on this as the PACE authors have given us so much that it can't really be defended as a mistake as they were given a decade to rectify these mistakes and ignored the critics.

I don't like to use word conspiracy given the negative connotations with that. However it appears there has been a conspiracy to defraud.

Remember this one? i just saw today on twitter.

 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I agree with @Large Donner that we really need to gather all the evidence on this as the PACE authors have given us so much that it can't really be defended as a mistake as they were given a decade to rectify these mistakes and ignored the critics.
From a scientific and not legal perspective they have had at least five years to correct, acknowledge and highlight mistakes since publication. It makes sense to compile a detailed and referenced list of problems. In part we have been doing that here since even before the first PACE trial paper came out, and others have been doing it, I think mostly in the UK, since the early 2000s, maybe 2003. David Tuller and others have written excellent and careful articles highlighting some of those problems.

I think a case might be made that claims have been misrepresented. If the claimed paper showing the bias in their use of standard deviation exists, and says what we expect, I think we have grounds to move toward having this investigated. If the analysis shows harms featured prominently then I think we will have further evidence to claim issues with misrepresentation, particularly if the declines are skewed to GET or CBT.

I am having trouble keeping up with all the good articles covering PACE. There were three today that caught my eye, and I am probably missing many more. Much of this is from researchers or from journalists who have communicated with scientists and researchers other than the usual few. Its finally the case that more and more biomedical researchers are speaking out about the PACE trial in public, instead of in private discussions. I first ran into anti-CBT/GET arguments, in private online discussion with researchers, in the early 2000s.

Having two of my local researchers cited as claiming anyone who uses CBT/GET for ME should have their practices closed and be sued is particularly nice.
 
Messages
2,158
Not sure if this has been posted elsewhere, but as I was drinking my morning coffee just now a little bird told me that a (reliable) little bird told them that Prof Peter White retired from his clinical practice the day before the data was released.

If it's true, part of me says hooray, but part of me says what a totally unethical thing to do (along with everything else he's done).

If he had a shred of decency he'd be in there full time, re-writing their manuals for patients, retraining staff to deliver proper pacing and support and liaising with the London or Birmingham metabolomics labs to get good research done on the patients. And writing to all past and present patients to apologise for misleading them about the 'benefits' of GET and telling them he was wrong about false illness beliefs. And inviting any made worse by his 'treatment' to apply for compensation.

And he'd be withdrawing all his papers about PACE and publishing the real results.

I'm dreaming again!!!

If you're reading this, Peter White, Trudy Chalder, Michael Sharpe or Simon Wessley, you know what to do. I challenge you to do it.

As Harry Potter said to Lord Voldemort just before their final duel:

'show some remorse'

Edit: I know it won't do a blind bit of good writing this. But it sure felt good writing it!
 

Chrisb

Senior Member
Messages
1,051
It was interesting that at PMQs today an MP raised the issue of the contaminated blood scandal, which has been ongoing, and with more serious consequences for those affected, for longer than the ME scandals.

In relation to this I once read remarks attributed to David Owen that when he called for departmental papers that had "crossed his desk" when secretary of state, to refresh his memory and discover why decisions made had apparently not been implemented, it seemed that they were no longer available. It was, I think, alleged that Whitehall shredders had seen heavy duty in the early 1990's.

It is a general rule in this country that scandals can only be investigated when most of the participants are dead.
 
Messages
65
Location
UK
To fulfill the court order, it would have to be in his hands before teh deadline.

If they haven't, depending on what the order said, it is enforceable either in that tribunal or a different court. But I can't imagine they'd not fulfill the order, QMUL that is.
 

worldbackwards

Senior Member
Messages
2,051
Not sure if this has been posted elsewhere, but as I was drinking my morning coffee just now a little bird told me that a (reliable) little bird told them that Prof Peter White retired from his clinical practice the day before the data was released.

I guess that he is now concentrating entirely on his 'research' and the defence of PACE.
I'd like to hope that would mean that the Barts clinic won't poke it's oar into others clinics' business so much as it has done previously, though I won't be holding my breath. I suspect very little will change for patients there.
 

Large Donner

Senior Member
Messages
866
On the issue of intent, and I am just thinking out loud here, if a haulage company falsified their trucks safety checks and more than one person was involved in this and did it together then one or some of the trucks went on to injure people because they had mechanical faults I am pretty sure there could be some kind of conspiracy to cover up etc charges brought against them.

Also remember that conspiracy is not just about personal injury it also a criminal offense to gain monies by deception or help to cover up fraud and if you do it on the public purse the consequences are usually dire for a private individual, like someone fraudulently claiming disability benefits etc.

If the new data reveals the recovery data to be dire then a whole host of people and chiefs who have tried to block the data release will have to be questioned about why they didn't volunteer to retract themselves and put immediate steps into place to rectify the damage done by their university, for one example, QMUL.

I am pretty sure at that point they would plead ignorance and throw Peter white under the bus.

If the "worsers" figures are significant and they are in big trouble, "we didn't know Gov" is not going to be a good defense.

All this nonsense form QMUL about not wanting to release the data because it could affect them financially is all very bizarre and they need to be questioned on what they knew, when they knew it and why they didn't rectify it, instead they just seem to have attempted to cover it up...with Peter white....hence more than one party.....hence potential conspiring.

QMUL only defense would be a claim of negligence, yet it would be even more negligent of them not to have questioned Peter White over potential "missed harms" from the PACE trial at the point they employed a team of lawyers to try to block the release.

In our favour also is the fact that it has already been judged that the reasons given for blocking of FOI requests had no validity so there is obviously something they didn't want coming out.

Did they know what these things were separate from Peter White and never discuss them together? Unlikely.
 
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JES

Senior Member
Messages
1,320
If we look at the latest developments of the Macchiarini scandal, I wouldn't be too hopeful that PACE will have any legal consequences. It wasn't until recently when a TV documentary was aired that was watched by over 10% of the whole Swedish population before things started moving forward and Macchiarini together with some other people got fired from Karolinska Institutet. And this is in Sweden where corruption is low and things are usually handled with transparency.

Macchiarini's experiments with artificial windpipes have caused death of six people from complications, and yet people were still willing to support him in certain circles. Lancet has issued an expression of concern, but all his articles are still available and none have been retracted by Horton. It's clear that these people are fine with treatments causing death of patients, so it will be extremely difficult to get the PACE articles retracted.
 

Large Donner

Senior Member
Messages
866
If we look at the latest developments of the Macchiarini scandal, I wouldn't be too hopeful that PACE will have any legal consequences. It wasn't until recently when a TV documentary was aired that was watched by over 10% of the whole Swedish population before things started moving forward and Macchiarini together with some other people got fired from Karolinska Institutet. And this is in Sweden where corruption is low and things are usually handled with transparency.

Macchiarini's experiments with artificial windpipes have caused death of six people from complications, and yet people were still willing to support him in certain circles. Lancet has issued an expression of concern, but all his articles are still available and none have been retracted by Horton. It's clear that these people are fine with treatments causing death of patients, so it will be extremely difficult to get the PACE articles retracted.

The system only acts when people push it from the outside. No one is going to do it for us is the harsh truth. There has to be an active group willing to keep pushing.

There has to be party with interest in continuing the fight not just lots of people who have no direct involvement yet are disturbed by the story.

Hillsborough is one example.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I think we shouldn't underestimate the momentum that has been gathering outside the ME community for things like open data, and no tolerance for accepting the 'old boys network' of doing business as usual. Increasingly people are speaking out about this including some scientists and there are watchdogs like retraction watch adding their part to this momentum.

I think that PACE could be attractive as the trial that is held up as an example of the need for change. This takes it beyond a legal issue where it may be more safe from harm and into the realm of public opinion. Being damned by public opinion would be no small thing.