Peter White writes to Wall Street Journal

[Esther12]

I'd be surprised if the WSJ was keen to help them co-ordinate it.

They've got so many critical pieces of PACE to respond to that it's not that surprising their responses will co-incide with new criticism being published!

 

[Comet]

One thought that keeps me alive is my desire to see the Wesseley School held to account in a court of law.

IMO, not only are they directly responsible for harming patients with GET and CBT, they are also indirectly responsible for the harm caused by lack of real treatment and also for feeding the attitude of the medical community that we are not really sick.

 

[Snow Leopard]

I'd be surprised if the WSJ was keen to help them co-ordinate it.

They've got so many critical pieces of PACE to respond to that it's not that surprising their responses will co-incide with new criticism being published!

That's one way of looking at it!

 

[Art Vandelay]

They don't mention that they have shared with friendly academics but not those who may look too deep

If White's argument is correct and they don't have consent to release the data, then they have breached privacy laws by sharing it with these friendly academics.

Obviously this is just another tactic in a long line of excuses, obfuscation, lies and unethical behaviour. If there was really an issue with privacy rules, they would have said this in the first place. Instead, they've argued that those patients seeking data were vexatious and harassing. Now that academics have requested the data, they've had to come up with a different lie.

 

[user9876]

False.

Edited to add: And here's a link to the consent forms to prove that what Peter White claims is not true.
https://www.whatdotheyknow.com/request/203455/response/508208/attach/3/Consent forms.pdf

Edited to add further: Well, technically, it is true in that the consent forms do not expressly permit data to be released. But this would not be required for non-personal data anyway. The important point is that there is no clause in the consent form that prohibits the release of non-personal data.

Edited to add yet further (and this is my last one, I promise): you'll note that there also isn't a clause about the release of personal data. That doesn't mean that personal data can be released: individuals are protected by the Data Protection Act 1998. As the DPA does not apply to non-personal data, and the consent form is 'silent', the only relevant legislation that should apply is the Freedom of Information Act.

They already released individual patient data in the form of SAEs I think in the appendix of their original trial paper when they list incidents.

 

[Justin30]

This quick response by Peter White to WSJ is curious as it is published on the same day as a very bright article has been published in Stat.

This has been a pattern of them, British Psych lobby. The minute there are good news in ME world, or threat to their credibility, then there are a few possible choices to counter attack:

- claim death threats or scientist abuse
- worldwide press release
- attempt to restrict FOI law.
- create a diversion

Someone or one of our organizations should gather all of this relevant data as per what @Kati has listed summarize it with dates.......then send it out to media everywhere.....

Whats so sad about all this is that the majority of the "Sane" people are the ones chatting on PR and our Real Experts.

The ones clearly "Insane" and inhumane are the Psychs that deny this falicy of Study: PACE

The people involved in PACE that changed and tampered with data should be jailed for the worldwide suffering this study has caused to people with ME/CFS.

 

[A.B.]

The ones clearly "Insane" and inhumane are the Psychs that deny this falicy of Study: PACE

Bad science can sometimes only be understood in the context of politics and conflicts of interest. What PACE authors did makes no sense, if we look at research as pursuit of truth. If we look at research as means to justify certain policies then it all starts to make sense. Truth was never the goal. The goal was to promote a therapy and portrait CFS as behavioural disorder so that insurance companies and the health care system can deny patients financial support and medical treatment, and so that the authors can enjoy the prestige and financial benefits of being experts in the only "effective" treatment. All the mistakes and errors by the PACE authors are not incomprehensible accidents but necessary to distort the truth so that the desired conclusions can be made.

 

[Justin30]

Bad science can sometimes only be understood in the context of politics and conflicts of interest. What PACE authors did makes no sense, if we look at research as pursuit of truth. If we look at research as means to justify certain policies then it all starts to make sense. Truth was never the goal. The goal was to promote a therapy and portrait CFS as behavioural disorder so that insurance companies and the health care system can deny patients financial support and medical treatment, and so that the authors can enjoy the prestige and financial benefits of being experts in the only "effective" treatment. All the mistakes and errors by the PACE authors are not incomprehensible accidents but necessary to distort the truth so that the desired conclusions can be made.

Well said

 

[ScottTriGuy]

IMO, not only are they directly responsible for harming patients with GET and CBT, they are also indirectly responsible for the harm caused by lack of real treatment and also for feeding the attitude of the medical community that we are not really sick.

I would also add that the harm includes trauma.

Having serious, complex physical symptoms invalidated and psychologized by doctors may either create trauma - or deepen the trauma of having an illness with myriad intense symptoms (sometimes described 'as dying') - compounded by no discerned cause, no treatment, no support.

When framed from the patient perspective, the harm seems self-evident. When experienced by the patient, the harm is real and enduring.

 

[jimells]

Truth was never the goal.

From a non-lawyer's point of view, this looks like a fraudulent use of five million pounds of public money. In an era of crushing austerity for working people, I should think the honest Tories would find this appalling.

 

[A.B.]

From a non-lawyer's point of view, this looks like a fraudulent use of five million pounds of public money. In an era of crushing austerity for working people, I should think the honest Tories would find this appalling.

It looks like it, but it's hard to prove malicious intent. Maybe with the raw data... or with a whistleblower.

 

[JoanDublin]

He conveniently omits to mention that the FOI commission have already debunked this privacy argument and that he and his co authors are now appealing THAT decision. Methinks they doth protest too much indeed.... Anyone here have a subscription to WSJ so they could post this FOI commission response as a reply to his comment?

https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1560081/fs_50565190.pdf

 

[alex3619]

It looks like it, but it's hard to prove malicious intent. Maybe with the raw data... or with a whistleblower.

You need witnesses to go for intent. Demonstrating deliberate distortion of results is much easier. The facts can be shown, what people thought about them is much much harder to demonstrate, and without a whistleblower is most likely a waste of time.

Its even easier to show flawed research. Its already been done. So we just need to push that as far and as hard as possible, and mention it in comments every single time the notion of PACE is raised in the media, together with references if we can.

 

[Kati]

From Hillary Johnson on Twitter:

Hillary Johnson (@oslersweb)
2016-03-24, 1:59 PM
Peter White tells WSJ he can't release Pace data 'cause no permission from patients; has he asked them? wsj.com/articles/publi…