Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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IMPORTANT: The Conversation (media) has exposed the poor PACE Study - please contribute to comments

Discussion in 'General ME/CFS Discussion' started by Kenny Banya, Mar 23, 2017.

  1. Kenny Banya

    Kenny Banya Senior Member

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    Australia
  2. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Done.

    Comments all good so far. Keep them coming.
     
  3. sarah darwins

    sarah darwins I told you I was ill

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  4. Laelia

    Laelia Senior Member

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    I have set up a separate thread relating to this which will hopefully encourage more comments on this article:

    http://forums.phoenixrising.me/index.php?threads/pace-trial-fraud-or-incompetence.50183/
     
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  5. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    I said this on another thread, but I'll repeat it here, and will try to add it to the comments on The Conversation.

    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.

    Edit to add: Done and more - this is fun! Do join in.
     
    Last edited: Mar 24, 2017
  6. Esther12

    Esther12

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    It's probably best for patients to avoid making an accusation of 'fraud' regardless. It's a word that can imply lots of different things, so can seem unreasonable. While there's more and more strong criticism of PACE, I still think patient comments are most useful when they're cautious and stick to the facts. Things are improving for us, but they've been improving as a result of so many people making cautious and rigourous criticisms of PACE, so it's probably worth trying to stick to that rather than risk saying things that might lead to others dismissing our concerns as over-the-top.
     
  7. Laelia

    Laelia Senior Member

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    I think I agree with what you are saying but on the other hand, if there was fraud involved, does it not deserve to be exposed?
     
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  8. Esther12

    Esther12

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    Yeah - it's always worth digging for evidence and pursuing truth, but I think that this is going to be a gradual process of picking part exactly what happened, what went wrong, and who is responsible. The more arguments we win, the easier it will be to then push for the release of further information, and so on. It's just best to avoid getting ahead of what the evidence clearly shows imo.
     
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  9. Valentijn

    Valentijn WE ARE KINA

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    Fraud is a crime. Do you have evidence that someone committed it, other than circumstance? And there are plenty of ways to discuss improper conduct without using a word which labels it as a crime.
     
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  10. Laelia

    Laelia Senior Member

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    These are the sorts of questions that I am trying to understand the answers to, so thank you for raising them! By the way, I have not personally said anywhere that I think that the PACE trial was a fraud (or wasn't). I'm just trying to have a discussion about it and find out what other people's thoughts are.
     
  11. Laelia

    Laelia Senior Member

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    But that's the point. I think there are many who believe that there was crime involved in the PACE trial. And by using other ways to discuss improper conduct as you suggest, they would not be labelling it for what they felt it really was.
     
  12. Laelia

    Laelia Senior Member

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    I absolutely agree with you. But I think there those who feel that by saying that it is fraud they are not getting ahead of what the evidence clearly shows. Which is why I think it is important to have a discussion about what the evidence clearly shows.
     
  13. Valentijn

    Valentijn WE ARE KINA

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    You're talking about beliefs and feeling. Accusations of a crime generally require a higher standard. And I doubt the judiciary in the UK subscribes to the school of thought that opinions are as valid as facts :p

    But I think the author of the piece made it fairly clear in the comments that he doesn't want accusations of fraud brought up there, and we should respect his wishes in that regard.
     
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  14. Laelia

    Laelia Senior Member

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    I don't think I was suggesting that they did :p

    Where did he do this? My apologies, I must have missed this. I agree, we should absolutely respect the author's wishes. I sent an email to editorial team at The Conversation earlier on to ask them to clarify whether or not it is legal or acceptable by their community standards to post comments on this article suggesting that the PACE trial was a fraud. I will let you know what they say if I get a response.
     
  15. Molly98

    Molly98 Senior Member

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    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.
     
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  16. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    This is what the author of the piece, Steve Lubet, said in one of the comments:

    '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.'

    Comments using the word fraud have not been removed, I think he was simply clarifying that he doesn't think it's fraud, and advising caution. He did not ban the use of the word.

    Edit to add: I agree with @Molly98 , I think they deliberately set out to 'prove' their fantasy true. No matter at what cost to the truth and to patients' health and lives.
     
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  17. arewenearlythereyet

    arewenearlythereyet CURRENTLY MODERATED FOR NOT BEING SERVILE

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    I think harm is harm so I don't care about whether it was fraud or not. Probably more along the lines of negligence leading to actual harm which effectively limits patients future prospects? Limitation to future prospects can have a monetary value to the patient in terms of compensation? This contravenes their hypocritical (I've kept the autocorrect since it's amusing) oath as well doesn't it? Does that mean they can be struck off?
     
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