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

Maybe that we cannot make any sense of their mind and body are one philosophy is because the value of it lies not in being an accurate framework for understanding illness but in advancing careers and financial interests. A political statement that justifies things like the existence of psychological medicine departments in universities and the practice of sending patients with unexplained health problems to a therapist rather than performing lengthy and possibly expensive medical investigation.

 

Not sure if that last bit is sarcasm, but the difficulty lies in the judgment question, not the principle. As a general idea, I don't think anyone would disagree, but this principle has routinely been used in the community to discourage patients from making demands that were perceived as too strong, like fair funding, or talking about things that were perceived as embarrassing or risky.

As an example, I wrote testimony to CFSAC years ago (with another advocate whose name I won't mention here in case she does not quite share my feelings on this sensitive subject) on suicide. I felt (and still do) that this disease can be so bad that some patients might reasonably, rationally choose not to continue to suffer. And I felt that the fact that patients are taking their lives not because they are depressed, but because they just can't bear to continue suffering speaks devastatingly to how bad this situation is. At the time, though, a number of advocates didn't really want to touch this space because they feared talking about suicide would play into the hands of people who wanted to claim ME is tantamount to depression or malingering.

Everyone understands the principle and probably agrees, but the fear behind it has too often, at least in the past, led the community to lose sight of what makes our story strong, and that's the whole reason the accusations were made in the first place, to cause us to self-police, doubt, equivocate, and be deferential.

 

@Mfairma,
I see what you are saying and agree in considerable part. But a story is only strong if it is perceived as strong by a listener. Who is the story intended to convince? As a doctor I guess I am the sort of person you might want to convince. I see the human cost as a strong line but I also perceive that the great majority of my colleagues would not. I gave a seminar to my old department on the PACE fiasco a while back and the mindset was worse than I had expected. There is a unique paradox with ME that every time you say things are bad that makes doctors more convinced of whingeing. It does not apply to any other illness so analogies fall flat. What got me hooked on advocating for ME was not the human cost stories on the net but the cutting edge science arguments that patients raised. Once I was impressed by the science the human cost issues sank in.

Advocating for ME is a bit like convincing Russians not to vote for Putin. I am not sure anyone nows quite how to do it. I agree with you that if there is a knack of putting the message across from a non-patient perspective David's up front approach is probably as good as any. But there are lots of medical people for whom even David will make the heels dig in deeper.

I have not been aware of PWME holding back from pointing out human cost but I may get a different slant on things. I agree they should not, but some guile may be helpful. I have had colleagues switch to a sympathetic view in conversation with just one touch of the right switch but it has to come in from left field.

I think the accusations were made in the first place for personal political reasons and without a care as to what the patients then did. If they shut up fine. If they made more noise, all the better. The antagonism was actually the objective - making capital out of being so heroic in the face of abuse. The more the merrier.

 

Very unusually Luther, I disagree with you to some degree. ME is different in that most of the population have a very skewed perception of PwME, and are still very easy to convince that PwME are just lazy people getting arsey with people accusing them of being so.

I think the way ME advocacy and is now going, and S4ME's involvement, is very positive. I am extremely wary of anyone (I don't mean you Luther ) who might seek to derail us from that; it would be too easy to completely unravel what has been achieved so far, which is in fact a lot.

 

So long as we do it well, with a sense of controlled highly constructive anger, then I agree. If it unconstructive then we shoot ourselves in the foot.

 

My interest was never first the medical community, but the public. I agree that approaching the medical community is a different animal and that doing so requires a different approach. You may feel differently, as as a doctor, but there is such widespread and reflexive willingness to dismiss patients as unreliable observers of their own lives among the medical community and, of course, such widespread prejudice against this disease that I don’t think tailoring communications and engagement styles solely and specifically to the needs of that group is a particularly effective approach. Particularly when doing so means playing down the parts of our narrative that make our story so compelling. The lack of confidence, clarity, and, indeed, militancy that is demanded by that approach puts us in a worse position relative to other groups that advocacy need consider, helping to send the message to the public that this is not really a crisis. While advocacy must consider the needs of the medical community, focusing solely on the needs of that group and ignoring the fact that this is first and foremost a political problem that will ultimately have a political solution is shortsighted.

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.

To your question about stories, in talking about suicide, the point wasn’t to convince the HHS people attending (who were the same people, by the way, making half-hearted, ever-shifting claims that they couldn’t fund research because NIH budgets weren’t increasing, claims they knew to be empty), but to try to help the community to see the power in our narrative and to think differently about what that narrative meant and how we might convey it. The reaction among HHS officials, by the way, was predictable. Awkward silence, empty expressions of concerns, and an immediate pivot to the need to deal with depression; no engagement with the central question, which was expressed clearly enough that the pivot to depression reflected either inability to believe the disease could be that bad (a tall order given years of compelling presenters) or a self-serving desire to move past uncomfortable realities they helped prop up. But I didn't write my portion believing they would suddenly get it; it wasn't my first CFSAC. (Read my first CFSAC testimony if you want to see naive belief in human goodness and faith in government; I did work in government myself at that point). I wanted to inspire change in us, and maybe, secondarily, to help drive further into the record that they knew how bad the disease was and did nothing.

I have been inspired by patients who lay bare themselves to make plain the crisis. Bob Miller presented at the first CFSAC I watched and struggled and failed to hold back tears as he spoke of how he was too ill even to attend his boys' baseball games. That, to me, is the stuff of change, the stuff that can help to inspire change on a scale much greater than the incrementalist crap we've gotten heretofore. It may have its place, but a movement composed entirely of solicitousness, circumspection, and forbearance is not one that will achieve results on a timescale that matters for people that suffer so severely that they struggle to make it not just through the day, but through the hour. I may not be that sick today, but I have been, and I know the well goes so much deeper.

 

Is this a joke, your saying that being smart about how you do things is a bad idea because throwing everything at a problem without thinking it through is the best strategy. And just so we are clear choosing to use no strategy is a strategy, just not a good one.
If we placed a text message at the beginning of a movie that said people have a disease called ME/CFS and want your support do you think that would work as well as the movie Unrest if it was seen by an equal number of people. Both are strategies but clearly one works better then another.

And thats what happens, doctors are trained to think of suicide risk as depression in need of SSRIs. Your playing into the hands of the PACErs who claim we need to be cured of false illness beliefs because people who are healthy don't want to kill themselves and if they do because they have a fake disease then they should be taken away and institutionalized (this is still happening to ME/CFS patients today). The euthanasia to release suffering is only now gaining some acceptance and is nowhere near settled yet, in many countries suicide is still illegal and even on compassionate grounds is not sanctioned. This is slowly changing but 30 years ago saying i feel awful i want to kill myself becasue i have ME/CFS would get you put away especially when a PACEr type ordered it.
This is not to say you say nothing, suicide on compassionate grounds is a real thing and as a society we need to go down this road for people who are suffering intolerably, sweeping this problem under the rug won't make it go away, it will just cause more suffering. But how you go about it requires a strategy so that you work towards the result you want instead of achieving the opposite result.

When your on the defensive making bad moves doesn't help your cause even if you believe anything is better then nothing. That said if your afraid of working strategically thats a different thing then not choosing a strategy and going with that. There is no guarantee a given strategy will succeed (which means if it fails you can try something else), but if you don't even try to work strategically then your chances of success are lowered or your depending on luck. If you undermine your own position by giving your opposition what they want to use against you then your being a fool. That is a strategy for failure.

The PACErs strategy is clear, smear patients, prevent real research, present themselves as the authority and blame patients for the consequences. They actually believe their lies and attempted to prove them, when that failed they doctored their results which is what David Tuller is unravelling. So we can either play into this strategy to harm us or we can not play into it and make other moves that will lead to a disease mechanism, acknowledgement and a treatment. If your posts can be used to prevent an FOI they will be, if they had been used to prevent the PACE data from being released we would not be where we are today. Is that what you would call success?

We are obviously not going to agree here, i do wonder if it is worth screwing ourselves over just do we can "free" ourselves of considering the consequences of our actions.

 

I've just caught up with this thread and read the article on Andrew Lloyd.

I found it to be excellent - thanks @dave30th.

I barely noticed the commentary in the paragraph that @Bill took such exception to. I certainly read it as fair comment.

What on earth was all the fuss about? Do people not have enough serious things to worry about?

 

I'm sorry, but I'm not sure how to respond to your post. I'm not sure you have understood what I wrote. That is not what I have argued. I would be happy to discuss further by DM if you would like. I'm not sure that we're understanding each other.

 

Do you actually consider that a likely possibility? I guess different styles come down to assessing probabilities.
I don't consider it likely at all. I think judges (and certainly any open minded person)can put things into context and come up with what is reasonable or not.

 

In the past, that hasn't been the case, and there are examples of quotes from forums being used to help excuse the refusal to release PACE data. Things may have changed since the PACE authors lost to Matthees at the information tribunal, but imo it's still worth being a bit cautious about this. If certain rhetoric will do us no good, but brings with it a risk of possible harm, why use it?

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.

 

I am curious to hear how you achieved this?

Yes, Vogt is deliberately trolling us presumably with an expectation that people will waste their time with him and not focus on other more important people/issues.

 

By hinting that there might be evidence for a biological mechanism that might be treatable. That was enough of some to say 'well yes I suppose actually some of them really are very ill'.

In contrast if I had started off by saying 'actually some of them really are very ill' my colleagues would probably have answered ' maybe they are - who knows?'.

 

I think both is needed. An angry crowd, and then, when it comes to negotiations, the emotionless, reasonable, scientific individual.

That's also with ACT UP: First, they had their "action" - which were pretty wild, but effective because of that - and then, when officials at last showed interest in communicating, they (ACT UP) sent their quiet experts.
(Well, that's what I took from the interview between a member of ACT UP and Jen Brea.)

 

Edit: Sorry, read moderator's comment too late.

 

It's not forum members that we have to worry about - it's having those words taken out of context by BPS proponents that's the concern. It's a tactic we've already seen used in the UK and we don't have the platform to defend against it.

But I think we also have a responsibility to recognise the risks. If there's nothing to be gained by using violent metaphors and something to be lost, why do it?

 

@Stewart
Your post explained to me why some people feel that no aggression should be displayed publicly since it can and was misused to mispresent people with ME.

This is an important fact.

To me, the solution is not to satisfy what the "anti-ME" people want to achieve with this (and what they achieved): to make us silent and to have us silent publicly. At the same time I see your point, and it is one disadvantage of social media that everything is public, so things that should be kept confidential aren't confidential.

The community must discuss what actions they want to take. It seems a public forum is not the place for it. Neither can we meet personally, for obvious reasons. Is there the possibility to have a closed forum, e.g. where you have to identify yourself (e.g. with identity card etc.) to the committee in order to have access? (I know this opens other issues, like data safety.) Or something completely different, like online meetings (e.g. via Skype or Chat). We need a possibility to discuss whatever needs to be discussed, and where people can rant without having the fear this could be misused by third parties. Maybe s4me is not the place for it, but maybe something else?

E.g. I am a member if an organization whose member meetings are online via chat. You have to apply for a membership and send in a copy of your identity card. Then you get a password. The chat meetings are members-only, and confidential stuff is discussed.

I think it is important to be outraged. There is lot of energy in outrage. Outrage doesn't mean headless anger or fury. There is thought in outrage. It's the foundation of a movement.

 

All thats needed is to not make threats, even obviously bogus ones. It does mean not saying everything thats on our minds in the ways we may want to but the alternative is worse. While most of us live in countries that make it legal to use common expressions we are a population living under siege and in some cases under threat of being taken away, institutionalized and harmed, so being extra careful deprives our reality denying adversary of ammunition to use to against us. We can still express whats on our minds (carefully) and someday these liars won't be able to even pay anyone to believe their ideology but until we get the same respect as diseases like MS, cancer or diabetes we need to express ourselves assuming we are being watched and catalogued because we most likely are.

I agree, the way i see it what you do with outrage is what ultimately matters, if you channel it into advocacy, raising money, research, speaking out again reality deniers and so forth your more likely to achieve your ultimate goal. 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.

 

Superb, @Luther Blissett.

Revolts, revolutions, up-standings always had outrage as foundation. Of course, it also depended on availability of weapons and money to be successful, but not always (see Ghandi and Martin Luther King). Let's look at history and how most human beings work. Outrage was always present.

There exist some works about the circulation of the elites. I once read a PhD thesis about it ("On Pareto's theory about the circulation of elites", a bit old, from the 80s or 90s), and it was very illuminating. For me it was interesting to read about the part that the normal population takes in this. So the question is: How to reach the population? Emotions are an important part.

There is also a book, "Empört euch!" (original "Indignez-vous" by Stéphane Hessel, see Wikipedia for instance).

 

@Sasha, you were fast!