Trial By Error: Some Thoughts About an Upcoming Article

Discussion in 'General ME/CFS news' started by Andy, Jan 31, 2019.

  1. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Good to know what's going on. Given how the UK media boycotted the HoC debate(*) I'm not surprised.

    When I read the questions the journalist asked Professor Racaniello and @dave30th, first their answers reassured me that the planned piece won't achieve anything. However, there is so much bad journalism and bad science in high profile media--and there is the SMC. So I think it is still possible that the piece might be published and might keep us all busy for a while.

    It could be helpful to have a good journalist interested in rigorously portraying the SMC's history, without necessarily stressing their agenda about ME.

    (Edited for clarity.)

    (*) Edit 2: Just have learned that ...
     
    Last edited: Feb 1, 2019
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  2. Barry

    Barry Senior Member (Voting Rights)

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    My first thought, and not changed. I think the HoC debate has really rattled them. I suspect there may be a strategy in play here to undermine the HoC debate, and maybe rattle some MPs, given @dave30th's work will have underpinned much of their knowledge. Trying to undermine a linchpin. I think Carol Monaghan should be kept abreast of this.

    Can these people never see that every time they smear campaign the people who strive for good science, they prove, over and over again, their inability to provide any kind of scientific counter argument ... because they have none! It might be good to have a very simple and very clear illustration of that in some way; it is a behavioural trait of these people that seems burnt in. Obviously any counter along these lines cannot even hint at getting personal, but a wholly factual, chronological cataloguing of assertions and counter-assertions would highlight the strategy - a timeline maybe. This latest antic would clearly show up for what it is.

    Obviously ...
    ... goes without saying. If anyone tries to point to any such attacks as "evidence" for their argument, it will clearly be a distraction strategy, and could in fact be clearly shown up for how they misconstrue what evidence really amounts to; smear campaigns are not scientific counter-evidence. There will always be an unfortunate few who resort to such extreme behaviour, but they do not represent us nor what we stand for, good science. There will be extreme extremists who latch onto all sorts of good causes, but that does not invalidate the fact the causes are good. But such behaviour is highly emotive, and easily latched onto by those opposing the good causes, to deflect attention from the goodness of the causes.

    I think such an attempt could be their greatest mistake. I also think Carol Monaghan should be in the loop. Such an attack on David could actually do us a huge favour (sorry @dave30th), in that it would show exactly the kind of abuse (yes, I really do mean that) that pwME have had to put up with from these people for many years, in their determination (and now desperation) to protect their bad science and their BPS club that promulgates it.

    Also, trying to attack David's work from the perspective of his lacking medical qualifications, is again a lovely example of diversion tactics. To successfully and accurately report about a knowledge domain, does not require the reporter to be fully qualified their self in that knowledge domain. Their skill has to be in getting across what the knowledge domain experts are saying. Also, within a knowledge domain, not everything within it is complex, some of the knowledge is terribly simple. True, it would be foolhardy for someone outside the knowledge domain to presume they understood the significance of such things, but if they have listened to what the experts they trust have been educating them about, and the experts have written peer reviewed papers about, then it is fully justified for them to accurately report it; indeed it can sometimes be deemed a moral obligation to do so. Ultimately it is not about whether the reporter is fully qualified in a knowledge domain, but whether they are fully qualified to report it, and to utilise the expert sources behind them. I imagine that a considerable number of highly valid and successful exposés have been reported by people lacking full qualifications of the knowledge domain they have reported about. It is a red herring.

    In the end it is very simple: is there anything David has ever said that is factually untrue? If so then refute on a factual basis, like good scientists. David always invites them to do that, would welcome it even. As yet they never have, that I'm aware of.

    If this really is their potential counter to the HoC debate, then I think it could be a major misjudgement and serious own goal. It might also be an attempt to isolate David from sources of support, if they perhaps thought he might be afraid to discuss it openly; good that you didn't do that David :).

    So very well done David. Your work is clearly highly appreciated ;).
     
    Last edited: Jan 31, 2019
  3. Barry

    Barry Senior Member (Voting Rights)

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    My thought on that is that I'm sure there will be a mole or two within S4ME ... I mean, can you imagine there not being. So these people will have sight of anything written in here anyway I think.
     
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The questions appear to come from someone very shallow and stupid. I think this may turn out to be an own goal of major proportions. I cannot see it doing any harm to the scientific arguments and it may bring the issues to the attention of a few more people who really need to form an opinion.
     
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  5. Barry

    Barry Senior Member (Voting Rights)

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    Frankly I think they will be p*ssing into the wind.
     
  6. Alvin

    Alvin Senior Member (Voting Rights)

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    They can't because their ideology demands that their beliefs are correct no matter what reality says.
    Since they can't twist reality successfully they resort to lies and smears and bullying.
    They hope to defeat us with these tactics and think we are the problem and they are the heroes.

    They have no interest in science or the truth, their only interest is in convincing everyone their beliefs are eternal
     
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  7. Adrian

    Adrian Administrator Staff Member

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    Or Nigel Hawkes who has done a hatchet job for the BMJ.
     
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  8. dreampop

    dreampop Senior Member (Voting Rights)

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    This seems par for the course for SMC. All one can do is stick to the issues present in the studies. We all know it's a lash out to defend cbt/get and lightning therapy and present certain members of BPS cult as embattled scientist. The truth sustains over time.

    I'm glad to see ground is finally starting to move on the lightning therapy paper. Part of the issue isn't just that the editor's note is invisible - it's that it's meant to be a temporary measure. Well, o.k., but how long is long enough to look into it. 1 year? 5? A more appropriate response is due after a year - at least a time frame is due by that time.

    I highly suspect the legitimate scientific inqueries, after a career of unaccountability and lack of scrutiny has provoked this.
     
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  9. Adrian

    Adrian Administrator Staff Member

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    There are many new patients (or old patients) who stumble upon forums as they are trying to find information about ME so it is important that forums are public. Membership is not really controlled apart from filtering out people wanting to spam or sell stuff so members only doesn't really mean much. Again it is important that it is easy to join forums like this so that patients can join in a community when they want to.
     
  10. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    In addition to Dave's 2 virology posts, what other preemptive moves can the community take?

    Issue a media alert that a smear campaign against Dave is about to be launched and here is the context?

    David vs Goliath headline.
     
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  11. dave30th

    dave30th Senior Member (Voting Rights)

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    I found it interesting that this seemed to be phrased as if I'd made some sort of shameful admission.
     
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  12. large donner

    large donner Guest

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    What's so astonishing is that this journalist is setting out to trash another journalist.

    Doing so on the basis that the person doing the initial investigations (David Tuller) into public health policy, governmental departments, the withholding of scientific data etc whilst having sourced information, facts and quotes from a range of qualified critiques, scientists, doctors and MPs on the effects of claimed treatments and questionable practices arising within so called scientific publications, is somehow a terrible thing to do.

    Has this journalist ever heard of the fourth estate?
     
    Last edited: Feb 1, 2019
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  13. Adrian

    Adrian Administrator Staff Member

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    I think the argument should always be one of the way they are attacking a minority group of very sick patients. There maybe some nasty comments but it is not up to very sick patients to police the internet. The way they attack ME patients wouldn't be an acceptable way to attack any other minority group.

    Then pointing out that discussions and criticisms of the science is a very legitimate thing for patients to be involved in. Being a patient doesn't mean being stupid. Many organisations call for patients to be more involved in treatments and research yet when this happens with ME patients get attacked by researchers who fear their poor work will be exposed.

    Lets not forget that they are defining harassment as questions in parliament and FoI requests to get data which they should have published in the first place.
     
  14. Adrian

    Adrian Administrator Staff Member

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    You are a doctor since you have a doctorate. 'Doctors' only get the title as a curtesy and should only use it whilst practicing.
     
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  15. dave30th

    dave30th Senior Member (Voting Rights)

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    I expect and hope people will be extremely temperate in their responses.
     
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  16. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    When I first read this blog my heart sank. But on reflection I think it could turn out to be a real positive. What has been lacking for so long is public dialogue about the problems with the science - media coverage of the issues and public debate between academics with opposing views. If this anticipated attack on David becomes a big story, surely there will be reporters who want to hear from David and those who support him - including many of the MPs who supported the motion in the debate. This could be a great opportunity. I would so love to wake up to hearing a discussion on the Today programme between Jonathan and Sir Simon, or between any of the well-informed academics on our side and any of the PACE authors or their supporters. I know I'm biased, but I just can't believe that any intelligent neutral observer could listen to both sides of the scientific arguments and conclude that BPS research and treatments are sound.

    @dave30th If this article appears and is as hostile as anticipated, I sincerely hope you will seek public statements of support from Berkeley and other academics who support your work.
     
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  17. Adrian

    Adrian Administrator Staff Member

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    I wonder if they want a new article to point to when Bristol University investigates how they have failed to get ethical approval for some work and with other work dodgy things are going on. When the information tribunal happened I seem to remember they tried to point to a guardian article as evidence of harassement but that was thrown out has hearsay.
     
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  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    What we've seen makes this look very bad, but also, we haven't seen the final article yet. Generally I think advocacy is most successful when there's a real commitment to being cautious and making sure we have the facts right before doing anything. I think the best thing to do right now is to keep trying to inform ourselves, keep trying to pick apart poor quality arguments or misleading claims, and hope that sets a useful foundation for the future.
     
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  19. dave30th

    dave30th Senior Member (Voting Rights)

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    Absolutely not. This is not a good idea in any way, shape or form. No one should do anything at all. And when it comes out, any response must be temperate and well-thought-out. I would urge everyone not to be reactive and possibly not to do anything at all even after the article comes out.
     
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  20. dave30th

    dave30th Senior Member (Voting Rights)

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    This was in the works long before the debate. The story was delayed for other reasons. The coincidence in timing is just that--a coincidence.
     
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