1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Trial By Error: My Brief Encounter with Professor Crawley

Discussion in 'General ME/CFS news' started by Andy, Nov 20, 2017.

  1. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,479
    Location:
    UK
    Clearly there is no simple rule. But if someone has a big audience they have a duty to get things right or at least understand the issues so should be able to defend their statements and views.

    Sometimes I think I rely on other people to point out my wrong or impractical ideas. I value and enjoy the debate and it often leads to better solutions.
     
    Jan, Inara, Solstice and 11 others like this.
  2. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    I've felt - and said - this for a long time. You have to try and walk in the other person's shoes, no matter how unsavoury that may be. You have to try and understand a problem to tackle it.

    I think some psychiatrists have a wholly different perception of what science really is, like a closed system of their own definition (yes, I realise that is more akin to religion :rolleyes:). Maybe it's because they deal with so much that is intangible and subjective, it's as if they live in a world where these attributes are the baseline from which their belief system is rooted. And tangibles and objectivity just adorn their cosy world when and if it suits. Then add into the mix, some personality types that utilise truth and fiction as best suits them.
     
    Jan, Inara, Allele and 10 others like this.
  3. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    I'm an engineer, and I recall some very wise words (I paraphrase, cannot remember exactly) one of our HND lecturers spoke, when asked "What do you think is the most challenging aspect of solving a problem during a design project?" After a moment's thought he replied "Understanding the problem in the first place." Over the all-too-many years since, I've realised the wisdom of that. If you don't put the effort in to properly identify and understand what the problem actually is, and its nuances, then you will probably go off on a tangent and try solving the wrong problem, then wonder why it didn't work out properly.

    Properly identifying and understanding the problem you are trying to solve, is a paramount prerequisite for trying to solve it.
     
    healthforall, Jan, Amw66 and 21 others like this.
  4. Sean

    Sean Moderator Staff Member

    Messages:
    7,046
    Location:
    Australia
    If we can get Monbiot interested, that could be quite helpful.
     
    Jan, Inara, MEMarge and 9 others like this.
  5. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    Anyone mates with him? It's rather a shame that so many are us are rather lacking connections with powerful people (or anyone much).

    I saw Tuller got a couple of people criticising him in the comment section. It shows how careful he has been that all they have to complain about is that he says NICE requires "post-exertional malaise", when post-exertional fatigue is also allowed.

    To me, that just shows how desperate some people are to say PACE critics as unreasonable. Even that trivial, and legitimate, simplification is being used to try to claim that Tuller doesn't know what he's talking about and is harassing researchers. We need to stay as careful and rigorous as possible. A lot of self-interest and prejudice is against us.
     
    Jan, AndyPandy, Binkie4 and 19 others like this.
  6. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    I think someone should go to every speech of hers and ask a difficult question or two. Let them claim harassment from that, an alternative perspective calmly questioning a lie or two should exist at all her presentations. And if they try to sue most courts take a dim view of institutions using vexatious lawsuits against people telling the truth

    I find this very interesting. This rings in true in so many things beyond engineering covering politics, medicine, culture, laws etc.
     
    Last edited: Nov 21, 2017
    Jan, Amw66, Binkie4 and 14 others like this.
  7. TiredSam

    TiredSam Committee Member

    Messages:
    10,482
    Location:
    Germany
    The first words out of EC's mouth, even before DT had finished his question, were designed to portray him as an obsessive nutter to the rest of the room. She didn't even think of responding to the substance of what he was saying. Not a chance. Just launched into the name-calling straight away.
     
    Remi, Jan, Louie41 and 23 others like this.
  8. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
    82 comments now on Tuller's blog post.
     
  9. guest001

    guest001 Guest

    I like this idea.
     
  10. Estherbot

    Estherbot Senior Member (Voting Rights)

    Messages:
    185
    ladycatlover, Jan, Inara and 10 others like this.
  11. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,735
    Location:
    UK
    Very interesting..... I am not that far from one of his places of work, maybe I can get relevant info to him!
     
  12. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

    Messages:
    1,201
    Does he provide CBT to PwME? Worried about losing an income stream?
     
    ladycatlover, Jan, Inara and 3 others like this.
  13. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,735
    Location:
    UK
    It is one of the numerous conditions he mentions. He's also involved in teaching/supervising other therapists.

    @Barry don't worry I'm not proposing anything militant I just think he may be interested in hearing some of the science-based information eg bullet points from IOM.
    It's got to be worth a try at some stage.
    He also says he counsels people dealing with long-term illness and disability, to enable them to come to terms with their conditions/restrictions.

    His approach might be OK.
    He might have just been trying to stick up for someone who portrays herself as vulnerable and under attack from the HMVs (harrassing, militant, vexatious) ill people, their advoacates, experienced scientists and clinicians, Oh and a really scary US journalist who came to the UK just so he could "attack" her. No, I do know he was over here anyway.
     
    ladycatlover, Jan, Louie41 and 10 others like this.
  14. guest001

    guest001 Guest

    Protecting a vested interest then? Is it only me or is there a certain resemblance to another person we know?
     
    ladycatlover, Inara, Andy and 2 others like this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    David Tuller represents a lot of ME sufferers, its not only a few 'militants' who came up with the $60,000+ for him to continue his investigations. He is acting on our behalf and therefore according to the law:
    Action against discrimination
    You can do something voluntarily to help people with a protected characteristic. This is called ‘positive action’.

    Taking positive action is legal if people with a protected characteristic:
    • are at a disadvantage
    • have particular needs
    • are under-represented in an activity or type of work

    It is pwME who are suffering discrimination as a result of EC (and the others) false narrative:

    2. How you can be discriminated against
    Discrimination can come in one of the following forms:
    • direct discrimination - treating someone with a protected characteristic less favourably than others
    • indirect discrimination - putting rules or arrangements in place that apply to everyone, but that put someone with a protected characteristic at an unfair disadvantage
    • harassment - unwanted behaviour linked to a protected characteristic that violates someone’s dignity or creates an offensive environment for them
    • victimisation - treating someone unfairly because they’ve complained about discrimination or harassment
    https://www.gov.uk/discrimination-your-rights
     
    ladycatlover, Jan, Inara and 8 others like this.
  16. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,735
    Location:
    UK
    98 comments now! Who wants to be 100?
     
  17. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
    UK
    I assume the people defending EC have either attended some of her talks and believed her, as her audiences largely seem to do unquestioningly, or friends, colleagues or others with a vested interest in the kind of treatments she supports - including LP practitioners.

    None of them has so far come up with any substantive arguments to support the quality of EC's work or to find anything of substance wrong with David Tuller's critiques.
     
    Remi, ladycatlover, Jan and 14 others like this.
  18. Andy

    Andy Committee Member

    Messages:
    21,814
    Location:
    Hampshire, UK
    Given that the chap defending her on Tuller's blog mentions about the PACE authors having adequately answered any questions about the study, he obviously believes he is educated about the situation and I would say it's safe to assume vested interests in this case.
     
    ladycatlover, Jan, TiredSam and 10 others like this.
  19. Estherbot

    Estherbot Senior Member (Voting Rights)

    Messages:
    185

    *He is involved in the NHS as well as private practice...if this Mark Paine is our chap. Possibly a member of Esther's CBT/GET BACME group and recipient of emails from EC?

    *as @Liv aka Mrs Sowester pointed out likely to have a professional conflict of interest :)
     
    Last edited: Nov 21, 2017
    ladycatlover, Inara, Daisymay and 5 others like this.
  20. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    In that case we'd be assuming everyone who followed the topic had a vested interest. You could well be right about this person, but I think it can be helpful to try to engage with people on the assumption of good faith (at least at first).
     

Share This Page