PACE trial: fraud or incompetence?

[Laelia]

I think there has been some cross posting with this one:
http://forums.phoenixrising.me/inde...ce-study-please-contribute-to-comments.50179/

Perhaps these 2 threads need to be merged? I'd be happy if this thread were to be migrated over to the other post and we lose the title of this one.

@Esther12

Forget that, stupid suggestion. My brain was obviously not in the right gear when I posted that comment!

 

[user9876]

If, in due course, if it can be proven the PACE investigators wilfully manipulated the data to knowingly publish results that were seriously flawed, and then knowingly influenced how ME sufferers were treated - medically and otherwise, then I suspect there my be fraud. But getting to that point would be along way down the road. A public enquiry would be a good starting point.

Fraud involves an intent to make money or cause loss or risk of loss. So you would have to demonstrate that the manipulation was done to make money or cause loss or risk of loss.

 

[alex3619]

Fraud involves an intent to make money or cause loss or risk of loss. So you would have to demonstrate that the manipulation was done to make money or cause loss or risk of loss.

I think that sums up the legal side of things, however scientific fraud is not always about legal issues. MMR vaccine and autism research by Wakefield was, rightly or wrongly, not a huge legal issue. It was a scientific issue, and resulted in severe damage to scientific reputation etc.

Fraud in a legal sense will be almost impossible to establish without a whistle-blower or some as yet unfound secret document that establishes the case. In other words its not going to be established on current evidence.

As I currently understand it any infraction on the scientific side is called scientific misconduct. Its the popular description by the public and press when they talk about fraud.

In scientific fraud, again my interpretation, there is intent to decieve.

The problem is that within psychogenic psychiatry, which might be considered a strong-psych subset of BPS, there is a huge grab bag of unreason, evidence-less conclusions, biased methods, biased analysis, etc., going back to the original claims of Charcot and Freud.

Charcot, were he alive today and out of his time, would be treated as a medical quack. Freud would be considered at least a quack, and possibly have to face other allegations, including drug abuse and fraud. He most definitely provided a very false report on Anna O.

Things just continued in bad form right up to the current day. Taken within the context of where psychogenic psychiatry has gone, then very little done by Wessely, White etc., can be considered to be outside the realm of established practice. This is not however an endorsement of the psychogenic proponents. It undermines the credibility of psychogenic psychiatry, which was never good anyway, and undermines any form of strong-psych biopsychosocial claims.

Using such cultural and authoritative claims gives rise to what I think is a justifiable analysis that psychogenic medicine needs to be taken out of medicine entirely and into the realm of pseudoscientific unproven claims.

Now as I have said, if we can get strong evidence of actual fraud, things which cannot have other interpretation and will stand up as evidence in legal settings, then things will change. Right now we do not have that evidence.

We do have oodles of evidence (oodles = technical term ), that the PACE trial is a kludge of bias and implication and has no place in the scientific record.

 

[Barry53]

Public inquiry in the UK can be like walking in a minefield ... it would be like asking Sean Spicer to investigate Trump's ties with Russia...

Agreed. Especially as DWP have their sticky fingers in this pie.

 

[Barry53]

Fraud involves an intent to make money or cause loss or risk of loss. So you would have to demonstrate that the manipulation was done to make money or cause loss or risk of loss.

The definitions I have looked at talk about fraud being for financial or personal gain. I would think that knighthoods, public / professional acclaim, etc would warrant as personal gain, but I am not a legal eagle, so maybe professional malpractice or something.

 

[ladycatlover]

Things just continued in bad form right up to the current day. Taken within the context of where psychogenic psychiatry has gone, then very little done by Wessely, White etc., can be considered to be outside the realm of established practice. This is not however an endorsement of the psychogenic proponents. It undermines the credibility of psychogenic psychiatry, which was never good anyway, and undermines any form of strong-psych biopsychosocial claims.

Using such cultural and authoritative claims gives rise to what I think is a justifiable analysis that psychogenic medicine needs to be taken out of medicine entirely and into the realm of pseudoscientific unproven claims.

I just started another Weasel thread you might be interested in? At least it gave me a smile! I may well have posted in the wrong place - still not up to speed on it all.

http://forums.phoenixrising.me/inde...entioning-our-friend-simon.50242/#post-828486

 

[Barry53]

Of course not. But I'm absolutely certain there's nothing to gain by encouraging dozens of people to comment about fraud on his article.

If a potent legal expert is fighting on our behalf, and gently indicates we should not talk about fraud on their blog in this regard, then I think it makes sense to bow to his better judgement, and trust his legal knowledge and instincts. I would hate to inadvertently undermine Steve Lubet's efforts.

 

[Laelia]

I just started another Weasel thread you might be interested in? At least it gave me a smile! I may well have posted in the wrong place - still not up to speed on it all.

http://forums.phoenixrising.me/inde...entioning-our-friend-simon.50242/#post-828486

This article has been posted already in this thread:

http://forums.phoenixrising.me/inde...aigns-standing-up-for-science-29-march.50062/

It was posted towards the bottom of page 1 of the thread where you'll find some comments about it. You weren't the only one it raised a smile to!

 

[ladycatlover]

This article has been posted already in this thread:

http://forums.phoenixrising.me/inde...aigns-standing-up-for-science-29-march.50062/

It was posted towards the bottom of page 1 of the thread where you'll find some comments about it. You weren't the only one it raised a smile to!

Thanks Laelia - am hoovering up the comments there now and enjoying! Yum yum!

 

[Snow Leopard]

Fraud involves an intent to make money or cause loss or risk of loss. So you would have to demonstrate that the manipulation was done to make money or cause loss or risk of loss.

It is not merely about money, but any sort of gain, whether it be keeping your job, gaining power over something or someone etc.

 

[Laelia]

If a potent legal expert is fighting on our behalf, and gently indicates we should not talk about fraud on their blog

It was not obvious that Steven Lubet was indicating that we should not talk about fraud on his blog. He merely said "let's be careful about the word fraud"

I only mention this because I feel I'm being made to look like I was being disrespectful towards him which was not the case!

As I said already, I agree with the argument that it would be safer for patients to avoid discussing fraud on his article. I would also hate to undermine Steven Lubet's efforts.

 

[jimells]

Here is a message for our dear friend Sir Simon:

Dear Regius Professor Sir Simon Wessely: Thank-you for bringing us the PACE trial. I wonder if you still think it is "a thing of beauty". Your grand scheme for fame and fortune has turned into Frankenstein's Monster, and it is coming for you. Without PACE, we would still be limited to playing wack-a-mole with the new psycho-rubbish studies that are inflicted on us nearly every day. Instead you have given us a giant target with a glow-in-the-dark bulls-eye. And that target is getting bigger every day...

---------------
There's no need to prove fraud in a potential Section 504 action against US federal agencies. We would need to prove US agencies have discriminated against a group of disabled people, and we are about as disabled as they come. The public record easily supports a claim of discrimination. I dare say we have been excluded from the benefits of proper research by the NIH. The phrase "deliberate indifference" comes to mind.

Section 504 of the Rehabilitation Act states in part:

"No otherwise qualified individual with a disability in the United States ... shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency..."

This law is more typically used to force state and local government agencies to provide adequate resources to schoolchildren with special needs. I can't find any reason it can not be used against the feds. Unlike the Americans With Disabilities Act, the feds did not give themselves a "Get Out of Jail Free" card.

As for intent, we just happen to have a letter on NIH letterhead, sent to a CDC official, that plainly shows their intent to bury the illness and deny us the benefits of federal programs:

http://www.cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html

"I predict that fatigue itself will remain the subject of considerable interest but the notion of a discrete form of fatiguing illness will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder.

I consider this a desirable outcome."

 

[Barry53]

I only mention this because I feel I'm being made to look like I was being disrespectful towards him which was not the case!

I am sorry, I did not mean - or even think - that at all. It was just a stand-alone comment on my part, simply because I felt it was worth saying. Nothing more - promise .

 

[Laelia]

I am sorry, I did not mean - or even think - that at all. It was just a stand-alone comment on my part, simply because I felt it was worth saying. Nothing more - promise .

Thank you Barry. No worries .

 

[Kati]

It was not obvious that Steven Lubet was indicating that we should not talk about fraud on his blog. He merely said "let's be careful about the word fraud"

I only mention this because I feel I'm being made to look like I was being disrespectful towards him which was not the case!

As I said already, I agree with the argument that it would be safer for patients to avoid discussing fraud on his article. I would also hate to undermine Steven Lubet's efforts.

@Laelia I am very glad you have started this discussion and i think it is a necessary one. You haven't been disrespectful towards Steven Lubet. We just took the conversation outside of his publication, and I believe this is what he would have wanted if asked.

 

[Laelia]

@Laelia I am very glad you have started this discussion and i think it is a necessary one. You haven't been disrespectful towards Steven Lubet. We just took the conversation outside of his publication, and I believe this is what he would have wanted if asked.

Thank you Kati, I appreciate your comments. I started this thread also thinking it was a useful discussion to have. But I'm a bit worried now that I have started something inflammatory and unhelpful to our cause! I just hope people will take heed of the valid concerns that have been raised and that they will err on the side of caution while discussing these issues.

 

[Kati]

Thank you Kati, I appreciate your comments. I started this thread also thinking it was a useful discussion to have. But I'm a bit worried now that I have started something inflammatory and unhelpful to our cause! I just hope people will take heed of the valid concerns that have been raised and that they will err on the side of caution while discussing these issues.

I think that people have a right to feel indignated by decades of stalling science. Some on this forum have been sick for 3 long decades and more. But for those of us sick shorter is still just as painful for missing our lives and our livelihood.

The stigma and neglect for ME stems from somewhere. These people are still cnvinced they are doing the right things and their science is perfect. Perfect to save governments and insurance companies lots of money that is.

Rallying here as patients is a good thing in my view. Because it drives us to fight for justice.

 

[denlander]

In the excellent article "How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma" (see link to article below), the author has posted the following response to comments about the PACE Trial being a fraud:

"Let’s be careful about the word “fraud.” I don’t think the PACE team or journal editors are trying to fool anyone. They are sincere in their beliefs, although that does not make them any less harmful. The history of medicine is filled with clinicians who stuck to their treatments long after they were proven ineffective or worse. This is another extremely damaging example of that."

I suspect there are some (perhaps many?) on here that might disagree with this sentiment.

What are your thoughts? Was the PACE trial a fraud or was it simply incompetence? If you think is was fraud, what is the evidence for this?

https://theconversation.com/how-a-s...-was-doctored-adding-to-pain-and-stigma-74890

[Edited to remove suggestion to post comments about this on the article itself. It might be more sensible to keep the discussion about this here]

In the excellent article "How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma" (see link to article below), the author has posted the following response to comments about the PACE Trial being a fraud:

"Let’s be careful about the word “fraud.” I don’t think the PACE team or journal editors are trying to fool anyone. They are sincere in their beliefs, although that does not make them any less harmful. The history of medicine is filled with clinicians who stuck to their treatments long after they were proven ineffective or worse. This is another extremely damaging example of that."

I suspect there are some (perhaps many?) on here that might disagree with this sentiment.

What are your thoughts? Was the PACE trial a fraud or was it simply incompetence? If you think is was fraud, what is the evidence for this?

https://theconversation.com/how-a-s...-was-doctored-adding-to-pain-and-stigma-74890

[Edited to remove suggestion to post comments about this on the article itself. It might be more sensible to keep the discussion about this here]

Dddddd

I think probably it's this one:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776285/

I can't bear to use my brain energy to read it I'm afraid, so can't offer any insight into it.

 

[Laelia]

Dddddd

Are you okay @denlander? I'm not sure this is what you intended to post :thumbdown:

 

[SilverbladeTE]

I'm one with Marsellus Wallace on this... *cough*