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David Tuller - Trial By Error: A Post About Andrew Lloyd

Discussion in 'General ME/CFS news' started by Kalliope, Apr 4, 2018.

  1. MErmaid

    MErmaid Guest

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    I agree with @Bill constructive criticism. I think David’s message would be more effective if he opted to stick with reporting on the Science.

    This site is called “Science For ME” for a reason. We are a forum where different viewpoints are supposed to be welcome. If we no longer value Science, or if we no longer keep an open mind, then maybe something has recently changed I am unaware of?
     
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  2. TiredSam

    TiredSam Committee Member

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    Fine sentiments @Bill. However I wonder why you would then choose to undermine your own argument and prove yourself wrong with this:

    Not only is this an ad hominem attack (your are implying that @dave30th has behaved like an "ass-hat"), but @dave30th's response proves that such statements do not close dialogue. In fact it started one.

    Or were you being ironic?
     
  3. Bill

    Bill Senior Member (Voting Rights)

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    This is the "Science for ME" website, right @TiredSam?

    Or is that name just ironic?

    If we lose our focus on scientific reasoning and descend into throwing rocks and leveling insults then what's the point?

    Bill
     
  4. TiredSam

    TiredSam Committee Member

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    I'm just asking why you called @dave30th an ass-hat. It seemed inconsistent with everything else you were saying. I suppose the point I was making was that even you don't seem to have been able to resist having a little dig.
     
  5. Bill

    Bill Senior Member (Voting Rights)

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    It is a dishonest mischaracterization of what I said @TiredSam.

    I don't know Dave. I am disturbed by the abuse on this forum recently of Jen Brea, the incivility of comments directed at Clare from AfME, and now this. In that context, I'm critical of inflammatory rhetoric and the hurling of insults that seems to me to be crowding out adult discussions based on reason on this forum.

    That's not "a dig," it is a genuine concern that this forum could head the wrong way. It certainly isn't the promise that S4ME offered us.

    Bill
     
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  6. TiredSam

    TiredSam Committee Member

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    Can you please explain how I dishonestly mischaracterized your use of the word "ass-hat"? Genuinely, I don't get it. Thanks.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I can see your original point, @Bill, but what David is doing is getting at the science. To me this is exactly what a science forum is about.

    Science is not mostly about measuring things and writing down numbers. It is about constructing complicated ideas and trying to find ways that genuinely test those ideas by discriminating their predictions from those of other ideas.

    The main problem is that the people trying to do this get muddled.
    And because they are human they try to find ways to cover that up and so introduce all sorts of bias into their experiments.

    So peer review of science has very little to do with pointing out that someone's ruler was a bit short. It is mostly about identifying evidence of muddle and attempts to cover the muddle up. When making referee reports for editors it is all put in code words so that it does not sound ad hominem but those code words mean things like 'horse-ass' and 'numbskull' all the same.

    Journalists are refreshingly up front in contrast. It can be painful the first few times they write about you but you learn to give as good as you get.

    I think David has trod a fine line successfully here. Andrew Lloyd is, as he himself claims, an important figure in the ME science debate. He is also perhaps the most intelligent man in the field (although I might put James Baraniuk in that position) and the most accomplished scientist. Snide comments from journalists will be water off a duck's back, as he says, because he knows that his good science was good.

    But despite all this there we have a problem, because Lloyd has appeared to support PACE and the BPS model. At the least he has never pointed out that PACE is uninterpretable and that its authors and their friends have been throwing gratuitous ad hominem comments at their critics for ten years to cover up for this.

    So there is a real question here to put to Dr Lloyd. If he is as clever as he seems to be, and he does seem to be that clever, and also seems to understand the human nature side of things in a way that others seem not to, why does he take the stance he does? Why does he talk down to a journalist who is obviously already extremely well informed? It is a puzzle to me, to be honest. If Lloyd is the man he presents himself as then he should not be the least bit troubled by being called out on this. But he should be able to give us a scientific answer.
     
  8. Hutan

    Hutan Moderator Staff Member

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    @Jonathan Edwards, what is it that you have seen that makes you rate Lloyd so highly?

    I saw the Dubbo study quite early on in my illness and I was really impressed with it. It seemed to be a tremendously important study, showing how common a 'post-infection fatigue' response is to a range of illnesses - and how that 'fatigue' continues in a significant percentage of people.

    So it was quite gutting to read his later letter (in the BMJ?) which seemed to be just cosying up the the BPS people. And I watched a video of him speaking to a group of people with ME/CFS and was not blown away by his intellect or convinced by the evidence he presented from his clinic workers and treated patients to try to show that his CBT/GET treatments were working.

    It seems very hard to square the science of the Dubbo study with Lloyd's promotion of his clinics.
     
    Last edited: Apr 5, 2018
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  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    As I say, I think you have misunderstood science @Bill. It is very much about pointing out where others are bullshitting. In an all-comers forum that has to be said in plain English rather than code words and that is a very good thing because within science itself it goes on behind closed doors in cliques.

    Jen raised some treatments that are based on poor science and was pulled up on that.
    Clare and Sonya in my view have been doing pretty well to answer questions and that has been acknowledged. But as an organisation AfME still has some questions to answer about what is educational role is and I think it is absolutely in the spirit of science to keep pushing on that. If nothing else it means that if anyone is making it difficult for Clare and Sonya to say what they really think they are under pressure to justify that.
     
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  10. Bill

    Bill Senior Member (Voting Rights)

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    Sure, @Jonathan Edwards, asking Dr Lloyd why he takes the positions he does and expecting a scientific response would be more than reasonable.

    That's the sort of article I'd enjoy reading, especially if a sharp-minded and well-informed interlocutor were able to probe weaknesses in answers that strayed into support for BPS model approaches. Unfortunately, that's not what we got.

    Bill
     
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  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I rate Lloyd high partly because of the Dubbo study and also other studies he did in the 1980s and early 1990s. But more specifically I rate him highly because I have heard him present and he does it in a way that only about 10% of senior scientists do: in a way that shows that he understands exactly what the pitfalls are in a method and also exactly how to convey to an audience how they colour the interpretation. As a scientist I have got to understand what is going on in the head of another scientist presenting. In most cases it is clunking through tired old ideas without understanding them. In a few cases like Lloyd you can tell that he sees right through the muddle and also knows how to convey that to people in the audience who see through the muddle. Just the slight tilt of the head when pointing to a point on a data plot is enough for one to know what level he thinks at.

    And that is why we have reason to be so puzzled by his recent stance. I can think of a reason why he might take this stance as the least worst option but I would like to think that he might change his mind.
     
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    In theory I agree. In practice I don't think that would have worked. Everyone here is playing a role in a social game. Lloyd has chosen to play a certain role and he is not stupid enough to let his costume slip. As far as I can see David gave him plenty of space to explain why his stance does not seem to match with his intellect. Confronting him with that more directly would have just produced a politician's evasion. Journalists understand the games professionals play often better than the professionals do.

    Alo note that Lloyd agreed to engage, knowing full well what the political atmosphere was. He had his chance to put the record straight without David even opening his mouth. Instead he left us all puzzled.
     
  13. Bill

    Bill Senior Member (Voting Rights)

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    No, Jen was mischaracterized on this forum as having insulted the entirely of the UK ME/CFS population because she expressed her frustration that (in her estimation) that a determined act of piracy my one person had created an economic shortfall that meant she didn't have the money to continue the unrest campaign in Britain. And she got rubbished here for saying so. The criticisms had zero to do with the adequacy (or inadequacy) of the science in her film. This latter would have been fair ground for discussion.

    It does seem that AfME has a lot to answer for and many members have been able to address hard questions in a respectful manner. I hope those questions get a full answer. Others, however, went off the deep-end and only reinforced the negative "vexatious" caricature that works against our interests as people who hope to be taken seriously.

    I'm all for confronting "bullshitting" in science, especially when the lack of progress caused by this bullshit affects me directly. Good journalism involves asking tough questions. It is not good journalism, however, to make ad hominem attacks after-the-fact on people who have sat down for interviews rather than asking tough questions and publishing the answers.

    Bill
     
  14. Bill

    Bill Senior Member (Voting Rights)

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    It was your question.

    If doing an interview with a major figure in the ME/CFS medical establishment in Australia is written off as fruitless on its face, why bother participating in a charade?

    This person would like to have read a genuine engagement between Dr Lloyd and a skeptical journalist asking great questions.

    Bill
     
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  15. Trish

    Trish Moderator Staff Member

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    @Bill, I really don't understand why you are so angry with @dave30th's article.

    David says:
    And later in the article:
    So he has made it perfectly clear that he is doing a journalistic job of giving us his impressions and the flavour of his interaction with Prof.Lloyd. He has not made a personal attack, as far as I can see. Rather he has commented on Prof. Lloyd's style of presenting himself as the scientific expert on CFS, and how puzzling this is in the context of his support for GET.

    If we want a more detailed presentation of the whole interview, and the incisive questions David asked and the fudged answers he received, we will have to wait until he has time to write it up more fully, as he has indicated he intends to do.
     
  16. Bill

    Bill Senior Member (Voting Rights)

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    You are confused with the differences between statements like "don't act like an ass-hat" and "you are an ass-hat?"

    And I was clear that my frustration was/is with those acting as ME/CFS advocates who seem moved by anger rather than reason. That's a problem as I see it.

    Bill
     
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  17. Hutan

    Hutan Moderator Staff Member

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    @Bill, you have made your point, we have heard your opinion clearly. David Tuller has been kind enough to respond and give some background. Can we not leave it at that now, and avoid heading into the 'abuse hurling' territory that none of us want to see?
     
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  18. Bill

    Bill Senior Member (Voting Rights)

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    We will need to disagree about the nature of the personal attack, although your position seems indefensible since David Tuller has acknowledged it was such.

    Bill
     
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  19. Cheshire

    Cheshire Moderator Staff Member

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    I understand some of your concerns @Bill
    Part of me think we should stick to facts and remain polite, that we clearly have lots of arguments at our disposal (not out of some kind of moral concern, but because anything a bit strong could be used against us and backfire).

    But at the same time, I am totally pissed of. We've collectively been so badly treated by the very persons who should have cared for us, I've read so many appalling and tragic patients' stories...

    When I read the answers of the patient @dave30th quotes in his article, I was upset. That Lloyd keeps on selling his treatment while ignoring the impact it has on patients is just plain wrong. That he dares
    considering himself the "leading light" on ME in Australia, is both amazingly pretentious, grotesque and a sad joke. That needs to be highlighted.

    I recently saw BPM (Beats per Minute) a French film about Act Up Paris, and that made me think we were often too tame. (There are of course differences with the aids situation (amongst them, the Gay community was yet organised and fighting, we are just a bunch of disparate individuals whose only common point is that we suffer from the same disease). But both communities have been submitted to the same stigmatization and psychiatrized and unfairly treated.)
    Our anger is justified, but it has been reframed as some kind of pathogical symptom and its legitimacy has been erased.
     
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  20. Bill

    Bill Senior Member (Voting Rights)

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    I'm happy to go to sleep. It is past my bedtime. I didn't want to be rude by not responding to posts addressed directly to me.

    It is my displeasure with 'abuse hurling' that moved me to post in the first place. I'm against it.

    Bill
     

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