Rat fleeing sinking ship (Peter White retiring from Barts/HMS PACE)

[A.B.]

In a tribunal White would probably be found guilty of research misconduct because there is evidence he knew exactly what he was doing with the PACE recovery thresholds. A previous paper he authored with Dutch researchers noted that recovery thresholds defined in that manner would be misleading.

I believe research misconduct isn't a criminal offense even though it should be as nicely demonstrated by PACE. There has to be better ways for the public to fight against research misconduct.

The situation concerning GET harms is murky but ultimately there may still be legal consequences.

 

[Quilp]

The thing most likely to let the PACE researchers get away with their dodgy research is patients making over-blown claims that allow them to play the victim card and present patient critics as unreasonable. This is what they're trying to do amongst their allies in UK medicine, and we already face a lot of bigotry here, so need to be careful not to do things which will make it worse. I'm confident that I can show White is a quack, but I don't think he can be shown to be a criminal.

By definition a criminal is someone who has broken the laws of the land. Many are prosecuted, some are not. Many face justice, some do not.
Whether he can be shown to be a criminal or not, I do not know. But i do know that he has helped make my life and many more like me, immeasureably more unbearable than it already is. How many criminals can say they have managed that ?

''The thing most likely to let the PACE researchers get away with their dodgy research is patients making over-blown claims that allow them to play the victim card and present patient critics as unreasonable''

The victim card ? When in front of the ICO they could present no evidence ? That no-one has been prosecuted for harassment, intimidation, militantcy. I think that it would be more accurate for you to say that M.E patients have, for over thirty years, shown a remarkable degree of restraint in the face of overwhelming provocation.

It's a propoganda war, that we can agree on, only I have come to learn that they don't need us to feed them. They already dine on inaccuracies, distortions and mistruths with a select network of guests who already made up their mind about us long before they got to dessert.
If you think that by throwing a mouldy cheese sandwich at them once in a while has allowed them to get away with their dodgy research for over thirty years, I am afraid you place too much faith in the said sandwich.....even if it did hit Peter White on the head now and again.

 

[user9876]

The victim card ? When in front of the ICO they could present no evidence ?

The ICO has believed their evidence and not allowed reasonable requests for data on the basis of it. When they were challenged in the information tribunal they could not back up their claims but other FoI requests that didn't go to court were turned down with claims of harassment.

The difference in the one for PACE data is that the ICO backed the case and there was a lawyer who could ask questions and expect evidence rather than second hand reports.

 

[Esther12]

''The thing most likely to let the PACE researchers get away with their dodgy research is patients making over-blown claims that allow them to play the victim card and present patient critics as unreasonable''

The victim card ? When in front of the ICO they could present no evidence ? That no-one has been prosecuted for harassment, intimidation, militantcy. I think that it would be more accurate for you to say that M.E patients have, for over thirty years, shown a remarkable degree of restraint in the face of overwhelming provocation.

It's a propoganda war, that we can agree on, only I have come to learn that they don't need us to feed them. They already dine on inaccuracies, distortions and mistruths with a select network of guests who already made up their mind about us long before they got to dessert.
If you think that by throwing a mouldy cheese sandwich at them once in a while has allowed them to get away with their dodgy research for over thirty years, I am afraid you place too much faith in the said sandwich.....even if it did hit Peter White on the head now and again.

At the recent tribunal they clearly thought that they could bluff through with a couple of articles from the Guardian and BMJ that made things sound worse than they were. That's not to say that they could present no evidence, it's to say the they evidence they did choose to present was very weak, and it also seems that they were facing a rather skilled opponent in Mr Matthees. I do not think that they have the evidence needed to support their claims about some network of extremists that is in any way comparable to that seen with animal rights, but they do have, and have been collecting, examples of a tiny number of patients who write unreasonable things on-line.

With the ICO they have presented quotes from this forum as evidence of a vexatious campaign, and the ICO has used this to rule against requests for infomation about PACE. They have also been using selected quotes at conferences and behind closed doors, when other researchers tend to just trust their fellow researchers complaints. I'm not blaming patients for the way their quotes have been misused: some reasonable quotes have been misused out of context; some unreasonable quotes have been twisted to seem even worse than they are; and just posting on this forum has been used to claim some individuals' requests for data ar vexatious. But I am saying that I'm quite confident that we would be in a better position now if it were not for a tiny number of people posting unreasonable things, which has helped Wessely/White/etc create this 'militants' narrative around the patient critics of their work.

Also someone was prosecuted for something (harassment?) against Ellen Goudsmit, although I think that this person was not a patient, and Ellen is herself critical of Wessely, White etc.

I'm worried that some people underestimate what we're up against, and the need to play things carefully if we want to make progress. I certainly understand people feeling frustrated and angry. If you want to punch a pillow - that makes sense. But when posting on an open forum, or writing anywhere about PACE, etc, that's not the time to give yourself a fun emotional release. If we want to move forward with PACE etc, we need to get on-side many of the influential people in UK medicine who have shown themselves to be happy to be guided by prejudices against us, rather than taking the time to look at the actual evidence and arguments. We need to do everything we can to avoid giving them any excuse to do that. And I'm sorry that this is the case. It would be nice if we could be confident that patients blowing off steam on-line will not affect such important matters. It shouldn't. But what I've been hearing from people involved in discussions with researchers is that this is not the case though. The PACE team may be unable to win any public debate, but the real decisions are made behind closed doors where caricatures of patients' concerns are often used in our absence.

Do we want to use the opportunity we have to make real progress, or just enjoy writing angry over-blown things about those researchers who have done real harm? I'm afraid that there is a conflict between the two.

PS: There's a lot of stuff about PACE, etc that is intensely frustrating. Don't think I'm not swearing to myself about some of these people on a semi-regular basis. I'm sure that I also sometimes go too far in what I write, in ways more likely to do harm than good. It's hard to get right. But it is important to think about and try to get right, and to have a culture where peope speak up if they think that someone has gone too far, rather than just leave them to it because we all know White is an arse.

 

[BurnA]

@Esther12 I don't disagree with most of what you say, in general, however the fact is, you nor I, nor anyone else will ever police the internet.

The reason I speak up when you question other people's posts when they speak out, is that I am afraid you are sending the wrong message. Or at least it might be interpreted incorrectly.

There are plenty of patient lurkers on these forums and there are plenty of patients who only post from time to time.

If you attempt to quieten down criticism of the PACE trial or it's authors just because you don't like it, for whatever reason, think about the message that might be sending out to other patients.

They might now be afraid to criticise the PACE trial.

That could be far more detrimental than any hypothetical researcher who was going to save us all but decided not to because they read a couple of questionable posts.

To sugest we would somehow be in a better place were it not for a tiny minority of patients is just nonsense in my opinion. Do you not think Wessly and the SMC and everyone else wouldn't have dreamt up whatever they needed to, in order to protect their careers. Of course they would.

 

[Esther12]

@Esther12 I don't disagree with most of what you say, in general, however the fact is, you nor I, nor anyone else will ever police the internet.

Of course. I never try. I just want to explain why I think that certain things are unhelpful. I'm not trying to ban things that I think are counter-productive, I just want to explain why I think they should be avoided.

The reason I speak up when you question other people's posts when they speak out, is that I am afraid you are sending the wrong message. Or at least it might be interpreted incorrectly.

There are plenty of patient lurkers on these forums and there are plenty of patients who only post from time to time.

If you attempt to quieten down criticism of the PACE trial or it's authors just because you don't like it, for whatever reason, think about the message that might be sending out to other patients.

They might now be afraid to criticise the PACE trial.

That could be far more detrimental than any hypothetical researcher who was going to save us all but decided not to because they read a couple of questionable posts.

I think that some claims go too far, are unreasonable and inaccurate. I think that this is a bad thing. I think that it would be good for lurking patients to realise that while it's important that we are speaking out about the problems with PACE, etc, that some forms of criticism can be counter-productive. Better to have patients making cautious but pointed criticism that they can actually back up than throwing around criticisms which, if they are called on, will make them seem unreasonable or untrustworthy.

Also, in terms of the 'target audience' for criticism, and those who need to be reached, British academics/medical researchers are much more important to persuade than anyone else. By far. I think we're at the point where the most important people for us to get on-side are, unfortunately, the sort of people steeped in the prejudices promoted by the PACE team. Getting more of this group to be more speak out about the problems with PACE is going to be necessary for us to make real progress on PACE in the next few years.

I think that we're already at the point where its reputation in America is pretty fatally damaged, even if most there would rather avoid the topic than speak out about it. But it's the power structures in UK medicine that are going to keep us from the sort of victory that would allow really rapid progress. Most people in society are so uninterested that I think we're going to struggle to get enough pressure from outside to really bring PACE down, particularly when the UK science media is against us in the way it is, and we need to do more to get UK researchers to feel they have some responsibility to speak out about the problems here, even though they really do not want to.

Researchers using the 'heat', 'tone', 'abuse' around PACE as an excuse to avoid looking at the details is a real problem. So why not do all we can to take that card away from them?

Maybe we'll get some breakthrough somewhere else but at the moment my view is that PACE are working towards a messy draw, with the judges in their pockets, and might be able to get away with it.

To sugest we would somehow be in a better place were it not for a tiny minority of patients is just nonsense in my opinion. Do you not think Wessly and the SMC and everyone else wouldn't have dreamt up whatever they needed to, in order to protect their careers. Of course they would.

If there had never been any unreasonable comments from patients, we'd be in a vastly better place. When patients have been mistreated for so long, it's inevitable that some were going to post some really angry and over-blown comments about those researchers responsible for dodgy research. Even then though, I still think that we'd be in a better place if it wasn't for the fact that there are a much more common scattering of less seriously over-blown comments that can make patients seem unreasonable and be used as an excuse by those who want to avoid the inconvenience of standing up against abuses of power.

A lot of those we're up against will do all they can to undermine us. I'd like to try to avoid making it any easier for them. There's nothing to be gained from exaggerated claims, so why not speak out about them?

 

[HowToEscape?]

"With the ICO they have presented quotes from this forum as evidence of a vexatious campaign, and the ICO has used this to rule against requests for infomation about PACE."

This is a matter of having the verdict set, and fishing for a peg to hang it on. Among normal people, random veting on der intertubes has zero judicial standing. You can find someone, or an account posing as someone, venting about virtually anything on the net, e.g. comments that older Europeans need to hurry up and die so that x,y or z may take their place faster, atheists venting against religion, or religionists venting against all religions other than their own.

If all of these anonymous posts indicate that the group a complainant assigns them to is guilty of harassment, then every group is a witch provided you get to the witch-assignment tribunal ahead and are affiliated with the judge.

When you already have the label of witch in mind and a venue to amplify your views, any excuse to convict is perfectly good.

 

[Valentijn]

That's not to say that they could present no evidence, it's to say the they evidence they did choose to present was very weak, and it also seems that they were facing a rather skilled opponent in Mr Matthees.

They had several lawyers representing them, and "crazy patients" was one of the cornerstones of their defense of hiding data. If the best evidence they could present was a newspaper article of Sir Simon Wessely smearing a group of disabled people, then that's the best they have.

I've seen very few comments on this forum that I'd consider over the top to an inappropriate extent. In fact, I can only think of one, off-hand. Admittedly, I'm one of those quoted somewhere as an example of how awful ME patients are

 

[Skippa]

Hmmm, is scientific fraud, if proven, a crime?

(I don't know)

What about conflicts of interest? Eg, getting paid privately for one role, and acting publicly in another related role?

(I don't know)

 

[boombachi]

I have mixed feelings about this subject. On the one hand I don't think it is fair to tell people they can't express their anger and frustration publicly. However, I also know that when we feel emotional, we can loose sight of the facts. When we don't have all the information, it is human nature to fill in the gaps ourselves. We then present an opinion which is easily discredited.

An example of this is the reaction to Ron Davis' interview with the bbc. Assumptions were made about the intention behind the interview.

Advocates need to be skilled communicators who focus on facts and choose their targets strategically. The ordinary population should be able to express themselves and their emotions and it is the job of institutions and services to engage with people and tease out the facts from the emotions and why one has led to the other.

In my professional life I am sometimes criticised. The criticism hurts because I have not intended to cause distress but it is not fair to dismiss the criticism because I do not like how it is expressed. That being said, I have probably dismissed some because of my emotional reaction to how it has been expressed.

So the question that seems to be in debate here is who needs to take responsibility for this communication?

I believe people should be able to express their feelings and opinions. If someone wants to effect change through advocacy, a different approach is needed. Although individuals may make assumptions about an entire population based on the actions of a few, it has been shown this does not hold up under scrutiny in court.

 

[boombachi]

I suppose in summary of what I posted above, i am saying that I think people should be able to express their opinions and feelings but with an awareness that they are relying on the ability of others to interpret the message. There are certain communication techniques that people can use if they want to, that are more effective, especially if you can't rely on the communication skills of those you are aiming your message at.

 

[RogerBlack]

Hmmm, is scientific fraud, if proven, a crime?

What about conflicts of interest? Eg, getting paid privately for one role, and acting publicly in another related role?

In the UK (and most countries), none of the things the PACE team and advocates has done is a crime. Nor are they likely prosecutable for damages in a civil case successfully.

Only interested parties can in general sue for breach of contract - which is what most of the conflicts of interest would be, and the only other disciplinary action would be through whatever professional bodies were involved, rather than criminal or civil proceedings. The interested parties are pretty much entirely part of the problem. KCL is not going to sue the PACE authors.

Absent them actually coming out and saying 'I intentionally did it to hurt patients that I knew were ill in the knowledge that the hypothesis I was claiming was false' - nothing is going to happen.

Anything less doesn't cut it.
They have multiple layers of cut-out between them and any resultant harm to patients, all of which would need to be proved they had improper influence over.
Taking, for example, PACE.
They applied to the proper authorities in the proper way, and got prior approval for what they were going to do.

Any resultant harm to patients in a clinical trial is not their fault legally, unless it can be proved they set out to intentionally harm patients.

Note, for example, that Wakefield, who did unauthorised research on patients, including unauthorised tests and procedures, falsified research, and whos continuing claims have lead to many thousands of deaths, has only faced the loss of his licence to practice medicine.

The 'I genuinely believed my stupid hypothesis, which is why I defended it' defence is pretty much inviolable for actual prosecution.

Retraction of all of the studies in question is in principle much more likely.

 

[Valentijn]

On the one hand I don't think it is fair to tell people they can't express their anger and frustration publicly.

I think this is an excellent point. We're here as normal patients, but the quacks are attacking us for not constantly expressing ourselves as professional advocates for the ME cause. It's not fair of them to demand that of anyone, which might be why the "harassment" narrative they trotted out in court didn't use the same patient forum quotes that they use in their lectures.

 

[Esther12]

They had several lawyers representing them, and "crazy patients" was one of the cornerstones of their defense of hiding data. If the best evidence they could present was a newspaper article of Sir Simon Wessely smearing a group of disabled people, then that's the best they have.

They probably did think that it was the best they had, but that's not the same as it being all that they had. They hoped that they would be able to get away with submitting reportage of 'harrassment' from 'credible' sources in place of real evidence of a campaign of harassment. They've done a good job of having the UK the media make exaggerated and misealding claims about this and hoped to use it to their advantage, but it didn't work (this time). They are still using collected quotes from patients behind closed door and at conferences, where they can feed in to the prejudices we face, particularly when patients have no seat at the table and are unable to raise concerns about how this evidence is being used.

Having patients making over-blown comments on the internet is going to make things easier for the PACE crew.

Hmmm, is scientific fraud, if proven, a crime?

There was an article on the debate about criminalising scientific misonduct last week:

https://www.timeshighereducation.com/news/should-scientific-misconduct-be-crime

The cases discussed by academics as examples of scientific fraud are even more egregious than what we've seen with PACE. In a lot of ways, PACE is a better piece of research than many other psych RCTs. Problems that patients are quite right to refuse to accept are wide-spread and tolerated in psych research. What I think makes PACE unusually bad is 1) the refusal to correct errors, 2) the spin on recovery and 3) the way that patients and critics have been smeared as anti-science, unreasonable, motivated by an opposition to MH, etc. [edit: also, PACE was unusually good in having three more objective outcome measures, and then unusally bad in the way that they played down the poor results for these].

A lot of the people that we need to get on-side do not want to criticise PACE. If we give them excuses to believe the way PACE responded to critics was justified then we're undermining one of the key things that makes PACE unusually bad. Some angry comments on-line should do nothing to justify the way PACE has responded to critics, but unfortunately we cannot assume that those we need to influence are reasonable.

On the one hand I don't think it is fair to tell people they can't express their anger and frustration publicly.

Just in case anyone had misinterpreted me, I'm not telling anyone that they can't do anything that they want to do. Along with an earlier comment about 'policing the internet' I'm a bit worried some may think I'm promoting some authoritarian response, rather than a desire to have an open discussion about these issues.

Advocates need to be skilled communicators who focus on facts and choose their targets strategically. The ordinary population should be able to express themselves and their emotions and it is the job of institutions and services to engage with people and tease out the facts from the emotions and why one has led to the other.

...

I believe people should be able to express their feelings and opinions. If someone wants to effect change through advocacy, a different approach is needed. Although individuals may make assumptions about an entire population based on the actions of a few, it has been shown this does not hold up under scrutiny in court.

The trouble here is that there's often a blurred line on the internet between advocacy and the 'ordinary population'. Posting publicly can be more like a form of advocacy than just having a private rant at home with a friend. This is made even more difficult by the fact that a lot of people here are socially isolated as a result of their ill health, and places like PR can be the only place that they have to vent. It would be nice if there was somewhere people can emotinally vent without being concerned that this will be used to serve the interests of PACE, etc. I'm just not sure if there is on the internet. That is sad and unfair, but it's the way it is.

I agree with a lot of what you say but this seems a little optomistic about the job of academic institutions, that often seem more interested in just protecting their reputations and attracting greater funding: "it is the job of institutions and services to engage with people and tease out the facts from the emotions and why one has led to the other".

I suppose in summary of what I posted above, i am saying that I think people should be able to express their opinions and feelings but with an awareness that they are relying on the ability of others to interpret the message. There are certain communication techniques that people can use if they want to, that are more effective, especially if you can't rely on the communication skills of those you are aiming your message at.

Yes, and I think that it would be good to also have an awareness that some people have an incentive to interpret these messages in ways that will serve the interests of PACE and harm patients. It really seems that in UK medicine there's a lack of people really commited to getting to the truth, and instead there's often a desire to interpret things in the way most favourable to their own interests.

 

[boombachi]

@Esther12, I don't disagree with anything you have said and I didn't mean to suggest that anyone is trying to stop people doing what they want. I suppose I am trying to figure this out myself and expressing my own conflicting thoughts.

On the one hand I have seen in my professional life how easy it is to dismiss people who complain depending on how they approach it. I spent considerable time trying to get people to understand this and helping them get their message accross more effectively. On the other hand, sometimes I saw someone go off on one and get a result because of it.

It is absolutely right to point out to people the impact of posting on a public forum. We are not all social media savvy. My boyfriend is constantly pulling me up on things just before I am about to post something on Facebook that would either offend someone or embarass the children.

 

[Barry53]

PACE is the perfect epitaph to his career.

In a different way to what they mean, that may well prove to be true.

 

[TiredSam]

PACE is the perfect epitaph to his career.

Here lies Peter White.

 

[Barry53]

The sad and pathetic irony is, is that if they really were the good decent high integrity scientists/people they like to portray themselves as, they would have been the very best people to set the record straight for PwME. But somehow that seems to have fallen on stony ground.

 

[Wolfiness]

Are they in "struck offable" territory like Sir Roy Meadow? (I know he was reinstated.)

 

[Wolfiness]

They own the narrative atm. I *do* feel I have to inhibit myself from expressing my anger publicly or I would be letting fellow patients down, and that is yet another harm they have wrought on me. Yessir no sir beggin your pardon sir. It is oppression pure and simple.