The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

PACE trial: fraud or incompetence?

Discussion in 'General ME/CFS Discussion' started by Laelia, Mar 24, 2017.

  1. Laelia

    Laelia Senior Member

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    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]
     
    Last edited: Mar 25, 2017
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  2. Valentijn

    Valentijn WE ARE KINA

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    Accusations of fraud, even on a blog or article, can have serious legal repercussions in the UK. That's why they are almost always deleted. I'd suggest having a conversation about it on the forum, perhaps in one of the several other threads which are already discussing the article.
     
  3. trishrhymes

    trishrhymes Moved to s4me.info

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    I think, as a Law professor, Steve Lubet has to be scrupulously careful about words like fraud.

    I also think he's being too kind in saying the PACE researchers are 'sincere in their beliefs'.

    On the other hand that could be a backhanded way of saying they are too stupid to know better.

    Being called stupid, to senior doctors, is probably a greater insult than suggesting motivations such as money and careers, which could be interpreted (by some, not me) as good capitalist motivations.
     
  4. A.B.

    A.B. Senior Member

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    Of course it's fraud, but it's easier to pretend that it's just incompetence.

    The principal investigators knew exactly that they were misleading the public. People that have nothing to hide don't start a smear campaign against critics, and don't fight that hard to prevent anyone from looking at the data.

    The remaining investigators are probably incompetent and don't understand why PACE is bad science. Not that the PIs couldn't be incompetent as well. Wessely has written a book on clinical trial design though. There cannot be no awareness on his part that PACE is just bad.

    There are also seems to be a culture in psychosomatic medicine that tollerates misleading claims and poor science in general. Psychosomatic medicine seems to be some sort of collective delusion.
     
    Last edited: Mar 24, 2017
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  5. Laelia

    Laelia Senior Member

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    Does this apply to comments on articles as well? So far the accusatory comments on this article do not appear to have been deleted. Also it's not a UK website. Do you know what the legalities are for posting on non-UK based websites?

    I think there is far more value in having a discussion about in on The Conversation website if this is possible, for the reasons already mentioned.

    [Edit: I may have been wrong about this]
     
    Last edited: Mar 25, 2017
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  6. lnester7

    lnester7 Seven

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    As a professional, I will disagree. Let's say that the deceit was not intentional, then when a problem was pointed out they would of have gone out of the way to prove how right they are based on their data, The fact that they prevented the data over all cost to be shown is because they knew what was there.

    They could have alleged ignorance before, but after all the trouble they went through hold back the data, discredit patients, and now not to retract the paper. They are all guilty and have to be accountable for.

    If I abuse my degree I will be held accountable, so why are this group of plp different. They have brought uncountable and un measurable damage to this community. And if left unchallenged they will do it to any other new disease.

    It was / Is Intentional FRAUD period.
     
  7. keenly

    keenly Senior Member

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    Those behind PACE are not sincere, just like those who run 'anti quack' sites are not sincere. There is an agenda at play.
     
  8. Yogi

    Yogi Senior Member

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    Good discussion point @Laelia.

    Will make a comment later on when my head has a good think about it. I have mentioned the PACE trial being fraud a few times.

    I TRUST THIS GUY'S INTUITION

     
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  9. ladycatlover

    ladycatlover Senior Member

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    I've been and left a brief(ish) thanks on the article, mentioning my recent Silver Sickiversary :balloons: on 9 March this year. Hopefully I won't make it to a Golden Sickiversary :aghhh: - I'm 68 already so seems unlikely. :sluggish:
     
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  10. SilverbladeTE

    SilverbladeTE Senior Member

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    To make a mistake, once, is understandable
    to keep doing it in the face of causing severe harm, even death, to patients, when they and others protest about this, is not excusable.

    Links to Health insurance companies, Ministry of Defence, Department of Work & Pensions makes it completely unethical TO BEGIN WITH, an enormous conflict of interest when the primary and ONLY interest of a physician must be the care of their patient, nothing else save the honest, current limits of resources.
    The "psychobabblers" should have never been involved with duties and treatment of M.E patients and other ailments linked to these "areas", recusing themselves as you would expect of any honest professional in such circumstances.
    That pushes it into the realm of serious malfeasance, again any professional would know this and avoid such to begin with.

    note that serious ethical breaches where professionals, especially doctors, are given "largesse" for "speeches" etc has become a huge ethical issue across the world.
    Would you trust a judge who was given all expenses "junkets", £5000 for flying to Las Vegas and giving speeches that a corporation has set up to sell their products that infringe on the judges professional area?
    Such a judge would be in serious hot water and if it was ever shown they had wrongfully imprisoned an innocent person who then died in jail because of these unethical activities, they'd be disbarred and jailed themselves, possibly on murder charges.

    please note, actual real life cases in America of judges being convicted for fraudulently imprisoning almost EVERY teenager who came before their benches to a private prison facility in return for million dollar bribes!
    https://en.wikipedia.org/wiki/Kids_for_cash_scandal

    as the old saying goes:

    once is an accident
    twice a coincidence
    But three times? That's bloody deliberate!
     
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  11. Laelia

    Laelia Senior Member

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    Thank you @ladycatlover!
     
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  12. PennyIA

    PennyIA Senior Member

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    I'll be honest? The fact that they MODIFIED criteria to fit the end result (not the desired test results), and all of the shenanigans to prevent data release, to attempt to slander critics, there's no way there were NO adverse affects (so that means they discredited the adverse effects OR HID THEM), etc, etc... I can't see how this can be tied to incompetence. I agree it could have started that way... but there is no way at this time there wasn't an intent to provide FALSE INFORMATION for the purpose of PROFIT.

    Does that meet the criteria for Fraud? I'm not the judge, but I'd sure love to see this hit legal process so it could be determined.

    I kind of get the discussion tied to the fact that doctors sometimes continue treatments that are proved to be unhelpful or even detrimental. But this isn't that. If this was that, there'd be a possible negative impact for hundreds of patients, not millions... and, USUALLY, when that occurs it's due to the doctor doing what he has always done and not incorporating new study results in his decisions for how to treat the patients.

    This INSTEAD is researchers misrepresenting results in a study and using it to promote a service they intend to profit from. And using that to PUSH that treatment plan to multiple countries impacting millions of patients... if it was a pharmacy company doing the same thing, we'd already have a class action lawsuit in the U.S. at this point.
     
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  13. adreno

    adreno PR activist

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    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3700330/

    By the above definition, I would say it's fraud.
     
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  14. Molly98

    Molly98 Senior Member

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    OK I am a bit confused if I posted in the wrong thread as it seems to belong here.

    Personally I believe fraud did take place, I believe PACE defrauded the British tax payer for a start.
    As for being sincere in their intentions, I do not think so.
    There is too much evidence of contempt, ridicule and disbelief of ME patients from these people prior to their involvement in PACE.

    They were sincere in their desire to provide the DWP and insurance companies exactly what they wanted.
    They were sincere in their attempts to undermind and discredit ME sufferers and their reputations.

    They were sincere in their seeking to advance their own careers, status, influence and authority.

    In my opinion intentions do not absolve someone from inflicting harm or committing a crime. believe it or not most child abusers do not have the intention to cause harm to a child they just put their own needs, and self interests above the child's and ignore, dismiss and deny the child's suffering. They ACT out their faulty beliefs and will continue with their faulty beliefs and denying a child's suffering even after they are convicted.

    The PACE authors have at all times put their own career interests and personal beliefs above the harm to patients and Continued to ignore, dismiss and deny the suffering of patients.
    Whether this is a choice or a serious personality flaw, patients should have been protected from this and deserve justice for the harms done. The fact that they still refuse to retract it points to serious personality flaw and that their are no systems in place to protect patients from harms done in this way is alarming.

    Has anyone ever seen one ounce of empathy, humanity, understanding or compassion from these people towards the ME patients they have studied? That may have hinted at genuine intentions. Instead they use everything within their power to discredit and belittle us and our suffering.

    No don't buy it sorry.

    Steve Lubet has done a great job, and I do understand his reluctance to use the word fraud himself in such an article, but good intentions is to forget the well recorded and documented history and its various players previous to PACE.
     
  15. Gijs

    Gijs Senior Member

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    Well said. I totally agree!

    PS: the lack of empathy says a lot! Good point!
     
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  16. user9876

    user9876 Senior Member

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    A thought I had is that QMUL (or Barts) are making money from selling services to the NHS based on treatments that were over promoted by PACE. As a entity QMUL is responsible for ensuring good governance of the PACE trial and also spent a lot of money to cover up the real results. They not only failed to investigate issues but they actively acted to cover up by hiding data. Was that to preserve the services that provide revenue?
     
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  17. ukxmrv

    ukxmrv Senior Member

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    Willful ignorance or blindness

    https://en.wikipedia.org/wiki/Willful_blindness

    Willful blindness (sometimes called ignorance of law,[1]:761 willful ignorance or contrived ignorance or Nelsonian knowledge) is a term used in law to describe a situation in which a person seeks to avoid civil or criminal liability for a wrongful act by intentionally keeping himself or herself unaware of facts that would render him or her liable. In United States v. Jewell, the court held that proof of willful ignorance satisfied the requirement of knowledge as to criminal possession and importation of drugs.[1]:225
    For example, in a number of cases in the United States of America, persons transporting packages containing illegal drugs have asserted that they never asked what the contents of the packages were and so lacked the requisite intent to break the law.
    Such defenses have not succeeded, as courts have been quick to determine that the defendant should have known what was in the package and exercised criminal recklessness by failing to find out.[citation needed] Notably, this rule has only ever been applied to independent couriers, and has never been used to hold larger services (e.g. FedEx, United Parcel Service, or the U.S. Postal Service) liable for the contents of packages they deliver.
    A famous example of such a defense being denied occurred in In re Aimster Copyright Litigation,[2] in which the defendants argued that the file-swapping technology was designed in such a way that they had no way of monitoring the content of swapped files. They suggested that their inability to monitor the activities of users meant that they could not be contributing to copyright infringement by the users. The court held that this was willful blindness on the defendant's part and would not constitute a defense to a claim of contributory infringement.
    Although the term was originally - and still is - used in legal contexts, the phrase "willful ignorance" has come to mean any situation in which people intentionally send their attention away from an ethical problem that is believed to be important by those using the phrase - either because the problem is too disturbing for people to want it dominating their thoughts, or from the knowledge that solving the problem would require extensive effort. This phenomenon is closely related to the aphorism, "Ignorance is bliss."
     
  18. alex3619

    alex3619 Senior Member

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    The use of standard deviation to calculate anything on non-normal data might be a mistake. However the calculation of the "normal" threshold for SF36-PF, using SD on the (acknowledged inappropriate) data set, when the lead investigator cannot deny he knew this would result in a biased result as he published a paper on this, is grounds for formal investigation for scientific misconduct. It is evidence of intention to mislead, and must be investigated to see if these allegations hold on further investigation by independent investigators. The further refusal to address this, discuss this, or to provide data for independent analysis, all complicate this issue.

    There are many places where we might suspect intention to mislead, and have asked questions, and been ignored. The normal calculation for SF36-PF goes beyond mere suspicion with real published evidence, if David Tuller is correct ... I cannot be 100% sure as I have yet to read the article in question, but now we have seen it written as by PDW dated 2007.

    If such allegations cannot be factually substantiated then we are left with systematic poor research quality and various commentaries from academics and scientists that range from, and I am quoting, "crap", "uninterpretable", and "the height of clinical trial amateurism".

    So what is this 2007 paper by PDW? Has anyone here read it?
     
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  19. Art Vandelay

    Art Vandelay Senior Member

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    Outright fraud.


    [EDIT: I have a few justifications for this conclusion. First, every alteration to the protocol and every lapse, mistake or flaw in the PACE study biased the results to favour GET and CBT. If the authors were simply incompetent, we might find flaws that affect the results in the opposite direction.

    Second, their conduct after the paper was published was to wildly spin and further exaggerate the effectiveness of their favoured treatments in the media. In particular, they misused words like 'cure' and 'recovery' when no reasonable person would claim that GET was a cure for ME/CFS even when accepting the results of the trial on face value.]
     
    Last edited: Mar 25, 2017
  20. Kati

    Kati Patient in training

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    I am the one who made the comment in the article and to which Steven Lubet replied to. And I used my full real name, a name that is so rare there is only one of me in the world :D

    I mentioned fraud because this is what it feels like. It was (still is) deceit, and they keep on covering up and pretending the emperor is still fully clothed.

    When there is fraud, there are cheaters and there are victims. The cheaters should know better. They are university professors. They are physicians. They are supposed to be professionals whom society trust. You trust they were doing the right thing. But then upon examination of this trial, they didn't play by the books. They discarded or opted out of objective measurements. They changed entry criteria. They picked patients who didn't have CFS to start with. They let confidential records in an unlocked cabinets and these records were stolen. They told patients mid trial that CBT and GET were superior to other interventions through a newsletter. They voted themselves as experts for Cochrane reviews and since they are the authors of this 'magnificient':bang-head: paper, confirmed that CBT and GET were the only and most effective treatments for CFS. They are now testing CBT and GET on children, for crying out loud. The very same group of physicians have refused to attend ME international conferences and debate their paper findings with our medical experts who see and research patients with ME on a daily basis. They continue their ideological warfare and refuse to admit any wrongdoings despite their own data, shared by court order, telling a very different story.

    Steven Lubet may think that fraud was a strong word. After all, he is a law professor. I respect that. I doubted myself for writing such strong word using my full, rare name. But I have a right to my opinion. And from my experience, from astute detective work from @Tom Kindlon, David Tuller, Carolyn Wilshire, Alem Matthees and others, I have the opinion that it is fraud, and that millions of patients from around the world are victims of this fraud. We are all entitled to an opinion, and I will stand by what I said.
     
    Last edited: Mar 25, 2017

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