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

Alvin said:
I'm sure Michael Sharpe regrets his tweet, because patients made him look like a fool with his own actions and David Tuller got more donations, an excellent example of outrage harnessed well.
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(This is a general comment, not directed at you @Alvin) I think it's fair to say that there will also be people who look at that thread of tweets to Michael Sharpe and believe it to be harrassment of Sharpe. That's just how it is.
 
Mfairma said:
Advocacy need not be monolithic. Engaging the medical community and working within the system, as advocates like my mother do, may demand certain styles of engagement. But that style need not, and should not, define the whole. And that’s a big part of what i’ve been arguing in this thread, that a narrow-minded dogmatism about engagement styles and strategies harms the cause.
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Effective communication often involves understanding the audience. So we need different styles to interact/influence/catch the attention of different groups. But we also need to understand that this is not just about communication but its an adversarial situation where there are groups with influence in the media that have a message to put that involves dismissing patients. This means they use some styles against us which adds to the complexity of a communication strategy. Its also somewhat shocking that there are groups out there who feel the need to dismiss patients.

Esther12 said:
There are lots of people suffering from terrible health problems and the general public isn't normally that interested. They might tear up at a sad story on the news, but that doesn't lead to real change. I don't think the general public will be so touched by our pain that they decide to rise up and demand radical change, and particularly not when medical authority figures are presenting us as emotionally unstable and unreasonable.

That's not to say that greater concern from the wider public is of no value, or the decent stories in the mass media are of no benefit, but I don't think that we're going to bring about the needed change through an emotionally driven mass movement imposing change on a sceptical medical establishment, and attempts to achieve something like this can end up being counter-productive if they are not done carefully.
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I think stories may have a very transitory effect unless people feel in someway more connected and its personal. As you say there is a lot of suffering from a range of health conditions. I think those that really resonate with people are those that become personal because people have friends who are ill or because people feel it could happen to them. Unfortunately the types of stories we see that dismiss patients tend to break those associations (I don't know if that is intentional).
 
Adrian said:
Unfortunately the types of stories we see that dismiss patients tend to break those associations (I don't know if that is intentional).
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This is complicated by most patients being so ill they disappear from society. In turn the media stories creates, sustains the stigma and discrimination and so the less severely affected either try to hide their illness completely or be less open about it.
 
Skycloud said:
(This is a general comment, not directed at you @Alvin) I think it's fair to say that there will also be people who look at that thread of tweets to Michael Sharpe and believe it to be harrassment of Sharpe. That's just how it is.
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Yeah probably, however given the choice of disseminating lies without consequence or calling out lies i choose calling them out.
 
My opinion is that Wessely et al calling harassment to some of the comments I've read on the forums here and on PR is just a another political tool to suppress speech. The idea that they would feel threatened is plain silly. And yes some people who read such things will want to believe it. I really don't think those people willing to believe that kind of narrative matter to the overall struggle to have the narrative set straight.
So I think people are putting too much stock in this idea that, for example, saying Wessely is a nasty abusive man to people with ME is going to derail any work toward people with ME gaining recognition for this disease. Here I'll acknowledge that while this statement is unflattering to SW and therefore he may see it as inflammatory it is also true. There will always be people who side with authority or choose to believe people who hold the power in any particular narrative. They will continue to do so even after the dust settles and PwME get recognition for ME as the serious biological illness that it is.

Think about it. If you've ever listened to a political debate in (here I'll use the UK where stems the complains) house of parliament you'll definitely want to cover your ears if sensitive. There is all manner of what is called 'heckling'. I think actually we do fairly well despite our frustrating circumstances. I am in no way advocating for a constant stream of vindictive here. Some people manage better than others in that regard. I would only be concerned if there was a steady targeted regular posting of such that forms a pattern and that is meant only to malign without having any other point. I believe that none of the BPS crowd actually give a toss about what they've been called by us in the sense that they feel hurt or threatened by it. No doubt they've been in meetings where debate gets heated and things are said.

I don't think that forums should be chock full of such remarks toward BPS'ers but neither do I think that we should be stopped from calling them out for who they are even when they have the upper hand (which I think is just now starting to fail them).

Simon Wessely is a man who knows exactly what he is doing. He had a paradigm for ME initially that was absolutely based on his bias and one that absolutely fit hand in glove with his objectives and of those who could reward him. He has never cared a whit for the people sick with ME as to him they were poor delusional sods who only thought they were ill (weak moral fibre and it would never happen to him) And he managed to export that idea around the world. In my opinion a few strong words here and there will make not any difference to how the struggle for recognition plays out. And we'd be reading exactly the same thing IMO (a narrative of unreasonable ME militants because we dare to question their narrative/'research' findings) it would just have had a different twist. No doubt it would have had a more 'they need help' and a stronger focus on our state of mental health.

Though increasingly this is all in the past as his views are very much in danger of being discredited for the harmful twaddle that it is. The bottom line is: I think the narrative of feeling threatened and harmed by things PwME have said is not really of much import in the larger scheme of things. And that we should not let him use it to cause us to censor valid criticism of him and other BPS'ers by calling him out on what he has done. Even when he cries harassment.
 
i'd like to see an article focusing directly on the militancy narrative in a thoughtful, influential magazine. slate, or new york times magazine, or whatever. perhaps in the usa, where it is more out of reach.

smc handing the reporter the story, the sex offender smear, the foia tribunal ruling, the disappearing cease and desist, afghanistan, the systematic nature of the accusations, etc. the story is compelling, i think.

i.e. attacking the problem directly might work better than shying away from the topic in public discourse?
 
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Backing up our strong comment with documentation, as @JohnTheJack did in the Michael Sharpe twitter thread, is when plain speaking can be really effective. I don't know who follows MS on twitter, but they all had the opportunity to see an accusation backed up by JohnTheJack . That really strengthened the cumulative response by pwME to that initial tweet of MS's imo. (Though I loved that people thanked MS for the link and the reminder to donate to DT)

I've been looking forward to Keith Geraghty publishing for a while now, based on his tweets. I hope it's a scorcher.
 
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Skycloud said:
Backing up our strong comment with documentation, as @JohnTheJack did in the Michael Sharpe twitter thread, is when plain speaking can be really effective.
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Yes, I don't think that there's any reason to avoid making strong criticisms that can be fully backed up, and I think that's far more effective and powerful way of criticising than slipping into the use of rhetoric that allows our concerns to be disputed, or viewed as merely a matter of opinion.
 
Esther12 said:
Yes, I don't think that there's any reason to avoid making strong criticisms that can be fully backed up, and I think that's far more effective and powerful way of criticising than slipping into the use of rhetoric that allows our concerns to be disputed, or viewed as merely a matter of opinion.
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+2
They are depending on us to not effectively challenge them, if we stay silent then people will believe their easy answer lies, if we challenge meekly they paint us as malcontents who threaten violence so we need to challenge them in a way that demonstrates their malfeasance for all to see.
 
Esther12 said:
For the above reasons I'd actually avoid talking about 'lies', even when it's clear that someone is promoting self-serving falsehoods. It's very difficult to be certain that someone is lying rather than just misguided, and accusations of 'lies' can be a distraction from what can be readily proven.
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Yes but we are not in a court of law. We are in an internet members forum and are lay people talking exactly the same way people do in a pub or at any gathering.

I really think you are going over the top Esther. I understand your concerns but I think you are overemphasizing the potential dangers on us of everyday speech.

I'm sorry but I think your constant over worrying on this is in danger of suffocating people.
 
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large donner said:
Yes but we are not in a court of law. We are in an internet forum and are lay people talking exactly the same way people do in a pub or at any gathering.

I really think you are going over the top Esther. I understand your concerns but I think you are overemphasizing the potential dangers on us of everyday speech.
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I was just saying why I think that certain approaches are more and less useful for advocacy efforts. I'm not expecting all patients to start taking the approach that I think is best (I know that I still fail to do so myself).
 
Esther12 said:
I was just saying why I think that certain approaches are more and less useful for advocacy efforts. I'm not expecting all patients to start taking the approach that I think is best (I know that I still fail to do so myself).
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Yes but you are being to harsh on even yourself. I do value your posts they are very well thought out and very poignant. Its just that many of us have just seem forums becoming impotent via tone policing in the past.
 
Maybe, but I've spent a lot of time watching, reading and engaging in attempts to progress patient advocacy over the last decade, and when there are certain things that seem to keep being counter-productive I reckon it's worth warning people about this so that they can hopefully have more success in the future.
 
Put it this way, if one of the BPS crowd decided to take a libel action against someone on an internet forum for saying they are a liar they would first have to consider the whole picture that would potentially be presented on the issue in court. Even if the libel issue itself may not be provable as a lie.

Tony Blair is a Liar, Alistair Cambell is a liar, Theresa May is a liar, Boris Johnson is a liar. They are all such because of provable past lies on massive issues, if I was to call them a liar on an internet forum saying they stole a packet of cheese and onion crisps then denied it they are not going to try libel me and be challenged in court over issues of lying, its just not in their interest.
 
Oh - I'm not worried about libel action and agree with your point about Blair, etc. It's more that doctor/research types who might be willing to listen to patient concerns can respond very badly to any claims that another doctor/researcher was a lying unless there's very clear evidence showing that lies took place.
 
Esther12 said:
Oh - I'm not worried about libel action and agree with your point about Blair, etc. It's more that doctor/research types who might be willing to listen to patient concerns can respond very badly to any claims that another doctor/researcher was a lying unless there's very clear evidence showing that lies took place.
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Fair enough but are there doctors and researchers trolling through members forums on the internet etc to find out if individual people mostly not using their own name have accused a doctor of lying so that they can then go away and judge that whole patient population harshly?

In Michael Sharpes and Henrik Vogts case they both seems to dig their own graves, so maybe its actually the doctors that come of much worse.
 
Esther12 said:
For the above reasons I'd actually avoid talking about 'lies', even when it's clear that someone is promoting self-serving falsehoods. It's very difficult to be certain that someone is lying rather than just misguided, and accusations of 'lies' can be a distraction from what can be readily proven.
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Agreed about 'lied'. Some may have noted I pointed out Sharpe 'made false and misleading statements'. I have purposely not accused him of 'lying'.
 
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