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

[Alvin]

I think the diabetes situation is a bit different. In the 1970s urine sugar tests were the only practical ones and there was not enough science to show that more accurate measurements made a difference. With electronic technology for home blood measurements and evidence of the importance of tight control things changed. They were a bit slow but I think that just reflects the inertia of health care systems that do not always have patients' best interests in frame. Better management was available and needed implementing. The situation for ME is rather different I think. Maybe the analogy with diabetes is that for a long time academic endocrinologists were in the pockets of drug companies making oral hypoglycaemic agents, which for a lot of diabetics were the wrong thing to use.

Fair enough, new technology and new understanding can take years or decades to percolate and of course people and professionals like to stick with whats familiar

 

[Barry]

We should have t-shirts that say "Fuck Simon" and mugs that say "National Disgrace" below Trudeau Chalder's face.

I agree with much of what you say, but coming down to their level is not my idea of overcoming them.

 

[Luther Blissett]

We'll just have to compromise in this matter I think.

Proposal 1: Make them run through 2 miles of custard (with a depth of at least 40cm) while wearing wellington boots (at least 2 sizes too large). The winners must then complete the course while running backwards without dropping a banana that is placed on their heads. Crowd jeering is encouraged. To be repeated every 2nd Wednesday until they repent. As well as providing public ridicule, this will bring tourism money into local economies, and help protect our precarious custard manufacturers.

Proposal 2: The running of the bulls. In this modified version, the bulls are replaced by a back of angry chihuahuas, and the participants are made to wear shoes constructed of cured bacon. The Crowd is encouraged to squirt tomato sauce in front of runners to increase the jeopardy component. The chihuahuas will all have numbered jerseys, to help identify crowd favourites and enable merchandising oportunities. All funds raised from merchandising will go to ME Charities.

I await your further suggestions.

 

[TiredSam]

I await your further suggestions.

Well so far I've been very good in managing not to post my suggestion.

It would make things a lot easier for the moderation team if we don't start a suggestions competition at this time.

 

[Mfairma]

I'm told that a number of complaints have been made about my obviously rhetorical suggestion of "tarring and feathering." If the moderators decide to remove my post, that's their prerogative. I was not aware that the IRA practiced tarring and feathering, but the context of my original comment and my clarification have already made clear that the suggestion was not literal, so I won't be removing the post or modifying the comment.

I want to make a few points on this front.

First, that there is such strong desire to censor a post that was quite obviously not suggesting violence demonstrates my point about this community's culture.

Second, relatedly, my comment was made in the context of criticism of David for not being sufficiently "decent" to someone in the BPS crowd. Some of the people responding seem to be missing that context. There are gradations in how you can respond in situations like this and suggesting that the community doesn't have to be so milquetoast in every arena, as I did, is quite clearly not the same as saying we should punch babies or insult their mothers. I'm arguing for a gradation, not for some flip to some wildly imagined pole.

Third, and most importantly, I am aware of the NICE review. I appreciate the weight of what will be decided and I appreciate people's concern of not wanting to run any risks. However, I feel equally strongly that the community has had little traction in part because how it thinks about advocacy and engages in the wider world does not mirror the seriousness of the crisis we live. I feel that the overly circumspect language that people would prefer advocates use and the overly safe advocacy approaches people prefer fails to send the message that this crisis is indeed a crisis. I appreciate why people feel that language and engagement is necessary, but feel that concern continually elevates proximate concerns over broader ends.

Yes, NICE is important, but there is always a crisis in this community. I've only been sick for 8 years (which is not terribly long in a community where some patients have been sick for decades) but I've seen many. And the crisis always demands patients speak softly. And advocates always compromise their demands before even making them, and moderate their actions and language to try to avoid giving material to bad actors, people who have made claims of harassment that they could not substantiate. I appreciate why some feel this is all necessary, but I'm saying there's a cost in taking that approach, and, to me, that approach loses far more than it gains, at least when taken in such an absolutist manner as it has been here. And, to bring it back home, I'm angry that this so defines the community that someone who's put so much time into the disease already is getting shit for not respecting decorum in a minor way.

 

[Hutan]

The moderators have considered the issue of the mention of 'tarring and feathering' in an earlier post, together with comments from a number of members. While we understand the unacceptability of any suggestion of violence towards anyone, we are satisfied that the context of the reference, and the later statement by the person who made the post, makes it clear that this was a metaphor.

Therefore, we will not be editing the original post. Thank you to those who had concerns for expressing them in a constructive way. We ask that there is no further discussion of this moderation decision.

We take this opportunity to re-iterate that no promotion of violence towards others is tolerated on this forum.

 

[Simone]

Calling himself the leading light for this disease is how he framed his role in this domain, so I considered it part of the discussion and fair game for comment. I didn't critique his hair, his appearance, his eating habits or his clothes.

I absolutely agree. Journalistic pieces aren’t always flattering to the subject. I think your observations were astute, and got to the core of the issue we face against Lloyd in Australia. They were an important part of the story. I’m glad you included them.

 

[Simone]

Lloyd made it very clear to me that he was unphased by criticism outside the scientific literature and that he wouldn't respond to any criticism outside that realm.

This is an important point. UK psychosocial studies have received wide criticism, both in forums like this and via letters to journals. Lloyd’s have largely received very little attention. I think part of that is because internationally his reputation is for the Dubbo studies so his psychosocial studies have flown under the radar. I hope his current work start to receive more attention.

 

[Esther12]

[I'd typed this, but decided not to post it... then discussions about 'tone' on another thread made me think that it would be worth posting.]

There are gradations in how you can respond in situations like this and suggesting that the community doesn't have to be so milquetoast in every arena, as I did, is quite clearly not the same as saying we should punch babies or insult their mothers. I'm arguing for a gradation, not for some flip to some wildly imagined pole.

I had responded to the specific example you gave:

We should have t-shirts that say "Fuck Simon" and mugs that say "National Disgrace" below Trudeau Chalder's face.

Would things like this really be likely to benefit us?

I feel like you're presenting an exaggerated view of what those calling for caution say, eg:

And the crisis always demands patients speak softly. And advocates always compromise their demands before even making them, and moderate their actions and language to try to avoid giving material to bad actors, people who have made claims of harassment that they could not substantiate. I appreciate why some feel this is all necessary, but I'm saying there's a cost in taking that approach, and, to me, that approach loses far more than it gains, at least when taken in such an absolutist manner as it has been here. And, to bring it back home, I'm angry that this so defines the community that someone who's put so much time into the disease already is getting shit for not respecting decorum in a minor way.

I don't think we should speak softly, or compromise our demands before even making them. You think this always happens? I do think that we should be careful to make sure that the things we say and ask for can hold up as reasonable through prolonged, challenging and detailed debate. I do think that we should avoid doing things that will not benefit us, and risk making things worse for ourselves and other patients.

I'd suggest the people wanting to take a bolder approach start testing that out on a small scale. Try engaging doctors, journalists, etc in discussion or debate. See how different approaches work out. Make sure you remember to assess whether they say you're right, not whether you think you've shown you're right. My impression has been that being more cautious gets better results, particularly in areas where one does not know all the details oneself. Patients talking amongst themselves about how justified our fury is might lead to agreement here, but that doesn't help persuade outsiders, and particularly not those with power in the systems that we are trying to change.

I don't think that there are going to be impressive marches on government with hundreds of people rallying against the mistreatment of ME/CFS patients. We're not a group well suited to certain forms of activism, so we have to make the best of the limited options available to us.

I'd prefer to have as little enforced moderation as possible on the forum, and less rules, but I also think it's good to have a culture where we all try to encourage one another to think carefully about what we post and try to avoid saying things likely to do more harm than good.

Having said that, I also agree that the criticism of Tuller's post was not justified.

 

[Bill]

Acting out of fury is bad for people with ME, it is also bad for the people who have to be around those furious people, and it is the surest way to alienate potential allies in the general population.

It is the best way to play into the hands of the people who are the objects of the fury.

Bill

 

[Stewart]

@Mfairma

I imagine that most people on this board - perhaps everyone - shares your sense of frustration and desire to scream and shout about the urgent need for a sea change in how ME/CFS is treated. But those of us who've been ill for longer (20+ years so far for me, over half my life) have seen again and again that these sentiments have the potential to blow up in our faces.

In the past the BPS brigade have made a habit of trawling patient forums looking for comments that they can take out of context to support their narrative that there's a well organised conspiracy of dangerous extremists who oppose their research and mean them harm. They've previously used our message board posts to successfully smear us in the media and as justification for refusing otherwise perfectly reasonable FOI requests. Back in 2011, when this whole 'dangerous patient' narrative went into overdrive, Simon Wessely successfully presented a blog post in which someone quoted Bob Dylan lyrics as evidence that credible death threats were being made against him. I kid you not.

I understand why you feel that everyone has unnecessarily jumped down your throat, but now in the (admittedly unlikely) event that at some point in the future someone tries to use your initial post to suggest that ME patients literally want to see psychological researchers subjected to various forms of mob violence, we can point to the discussion that follows (including your contributions) to show that this simply isn't the case.

Personally it makes my blood boil that Wessely was subsequently awarded the inaugral John Maddox Prize for his 'bravery in the face of harassment and intimidation'. And then knighted. And then elected President of the Royal College of Psychiatrists and subsequently President of the Royal Society of Medicine. But I'm afraid that screaming and shouting abuse at a man who has been so completely embraced by the Establishment isn't likely to achieve anything, however much it might make me feel better in the short term. If you want to see his reputation damaged the only way to do it is by persuading his peers in the scientific community that the work on which he built his career is completely flawed and that the patients he belittled and ignored were actually right all along.

Back in your initial post in this thread you said that the patient community was 'cowed' and too concerned with what 'they' think of us. I don't think that's a fair summary of what's been happening. I think a lot of patient advocates have realised that we'll only see real change by refusing to play the role that 'they' have assigned to us - angry, unreasonable and violent - and instead winning people over on the basis of what the science actually says. In the last couple of years we've finally started to see this approach making some real progress, although I recognise there's still an awfully long way to go.

When we've won that battle - when CBT and GET are no more and the psychological explanations have been thoroughly discredited - then we can turn our attention to seeking justice for all the damage the BPS proponents have done over the last few decades. But we can only do that when there's widespread agreement that the BPS approach *has* been harmful to patients - and that's the battle of hearts and minds that we need to focus on right now. Polite, well-reasoned, evidence-based argument will do a better job of winning people over than righteous fury will, no matter how justified that fury is.

You're absolutely right to say that there's a cost to 'speaking softly', but I can't agree with your statement that it's an approach that loses more than it gains. Ultimately what really matters is results, and 'speaking softly' (if that's what you want to call it) seems to be slowly getting us somewhere at present. At this point I don't think "Fuck Simon" t-shirts would help our cause, however much I might personally want to wear one.

(FWIW while I didn't agree with Bill's criticisms of David's article, I completely understood where he was coming from. And I was glad to see that David also seemed to understand Bill's concerns, and that he engaged with the criticisms constructively even though he didn't entirely agree with them)

 

[chrisb]

There seems to be plenty of scope for both approaches. Isn't the nice cop/nasty cop method acknowledged procedure?

 

[Luther Blissett]

Acting out of fury is bad for people with ME, it is also bad for the people who have to be around those furious people, and it is the surest way to alienate potential allies in the general population.

No. That is historically wrong is so many areas of activism I don't know where to start.

It perfectly mirrors what was said to Ghandi and Martin Luther King, the Suffragettes, Trade Unionists, AIDS activists, Queer Activists, Children protesting against school massacres.

Can we please stop acting as if the complaints against our behaviour are made in good faith?

 

[Liv aka Mrs Sowester]

Personally I find tone policing in our community infuriating. Things have changed in the last few years and we don't need to be as careful as we did 5, 10 or 20 years ago. We have voices and we should raise them in the face of ignorance and injustice.

If people with power over our lives are making ill informed judgments seemingly driven by arrogance they deserve to be called out and their behaviour should be highlighted.

We're fools to stay in the corner we've been boxed into. No marginalised community forces real change by raising their hands politely and saying 'erm, excuse me please?' and you can't win any game where your opposition has all the power and makes up the rules as you go along.

The more you refuse to hear my voice
The louder I will sing
You hide behind walls of Jehrico
Your lies will come tumbling
Labi Siffre, 1987

 

[Alvin]

Personally I find tone policing in our community infuriating. Things have changed in the last few years and we don't need to be as careful as we did 5, 10 or 20 years ago. We have voices and we should raise them in the face of ignorance and injustice.

If people with power over our lives are making ill informed judgments seemingly driven by arrogance they deserve to be called out and their behaviour should be highlighted.

We're fools to stay in the corner we've been boxed into. No marginalised community forces real change by raising their hands politely and saying 'erm, excuse me please?' and you can't win any game where your opposition has all the power and makes up the rules as you go along.

I completely agree but when faced with a powerful adversary strategy becomes very important if we desire victory. The squeaky wheel does get the grease but even today instead of grease we often get thrown under the bus.

 

[Mfairma]

@Mfairma
In the past the BPS brigade have made a habit of trawling patient forums looking for comments that they can take out of context to support their narrative that there's a well organised conspiracy of dangerous extremists who oppose their research and mean them harm. They've previously used our message board posts to successfully smear us in the media and as justification for refusing otherwise perfectly reasonable FOI requests. Back in 2011, when this whole 'dangerous patient' narrative went into overdrive, Simon Wessely successfully presented a blog post in which someone quoted Bob Dylan lyrics as evidence that credible death threats were being made against him. I kid you not.

Yeah, Stewart, I'm aware of how they have used patient statements. While I don't participate in these boards much these days, I spent a great deal of time reading them earlier in my illness, so I am familiar with the history. There is undoubtedly much that I do not know, especially these days given that I pay less attention to goings-on here, so I appreciate the reminders. But I would also point out that I helped to write the paper 30 Years of Disdain (https://www.meadvocacy.org/introducing_mary_dimmock_s_summary_thirty_years_of_disdain), which I think helped to make it easier to learn about our story and share that history with patients who hadn't been sick for as long, so if the suggestion is that only people that don't know the history could think that we should let bad actors circumscribe our actions, I would disagree. Additionally, there's a more reasonable debate over whether fears of being labeled "militant" should have prevented patients from speaking bluntly in the past, than now, as Liv pointed out. But even in the past, I think the lack of confidence in our narrative harmed advocacy.

[I'd typed this, but decided not to post it... then discussions about 'tone' on another thread made me think that it would be worth posting.]I don't think we should speak softly, or compromise our demands before even making them. You think this always happens? I do think that we should be careful to make sure that the things we say and ask for can hold up as reasonable through prolonged, challenging and detailed debate. I do think that we should avoid doing things that will not benefit us, and risk making things worse for ourselves and other patients.

Absolutely, I do. Maybe not in every case, but most, definitely. I used to see it in discussions about what to ask CFSAC in the first few years I was sick, when I still watched every meeting. Patients routinely asked less than what we deserved and worried that being too strident, asking too much, being too honest about what we lived and what we needed would turn off the people on CFSAC. I saw the same later, when Cort had decided everything was coming up roses in government (what was that, 2013-4?) and it was now time that we stopped making such unreasonable demands as funding commensurate with disease burden. And remember those years after the financial crisis when the constant refrain was how we were terribly unreasonable to ask for more funding because the NIH budget wasn't increasing yearly? Patients bought into that, many patients. Or later when Collins was trying to demonstrate he was doing something after Brian embarrassed him, and patients said it was unreasonable to ask for an official apology for how the government had treated us (which would have been tremendously useful, rhetorically), or in the time (year and a half?) after that when patients said we shouldn't criticize the government because they were now giving us everything we wanted and we just had to wait for the funding announcement? And on that note, that phrase about funding commensurate with disease burden and the insistence on defining our asks by what was right and fair, rather than our perceptions of what we might get, at least some of that came from the paper and a shared frustration between my mom and I in arguments we used to have years ago about how the community let bad actors foreclose our reasonable demands.

I had responded to the specific example you gave:

On the suggestion of mugs and t-shirts, no, of course I don't think a mug is going to bring about change. That wasn't the point that I was making. The point I was making wasn't about being provocative, it was about being confident in our story and recognizing that we have a moral and intellectual high ground that will carry, that our story is so strong that we can afford to show a little attitude about it. I realize the complexities of their chicanery on PACE and related research and the ways they've poisoned the well, but those don't wash away the hard realities of our story. Clearly, using a swear word has unnerved some, so let's take the example of the mug. I think we all agree that when this history is written, people will remember Trudie Chalders, a person who imposed on children a therapy combining a version of CBT that amounts to brainwashing and forced exercise, despite warnings from patients and experts that there should be a black box warning on exercise in the disease, in a very, very negative light. Is it really that bad to have a mug that calls her a disgrace? Is it really that bad to say now what we know will carry in the future, that these people are bad actors and a disgrace not only to science, but to humanity?

Bringing it back, my overarching concern is why we don't call a spade a spade. In the issue with Tuller's criticism of Lloyd, it's raising the question of why we would let concerns of decorum prevent us from calling people out for bad behavior. But, more broadly, it's why we let bad actors' loaded accusations of militancy prevent us from using the power we have through the means we have. And the community absolutely does that, though, I grant, relatively less so in more recent years. The community spent years judging what asks to make almost solely by reference to where we are and what we think we might get. That still happens. But we're so much better off now that more people are keeping an eye on the ball and insisting on funding commensurate with disease burden, and other metrics that are formed by reasoned judgments of where we should be. And when we're not getting what we're owed, we should call bullshit. It's not unreasonable. We are being mistreated and the people who sit in positions of power making excuses (like the HHS people who spent years claiming there was no money until budgetary increases made a lie of that excuse) should be called to account as well. If we worry too much that our demands for change or justice will get us labeled militant, which we do, we lose what gives us the most power, which is how unflinchingly bad this crisis is.

I think I've been pretty clear on how I feel on these matters, so I may not respond to any additional posts claiming I'm suggesting violence or single-handedly threatening our future. But I'd like to end with a quote and a t-shirt. While more militant than I feel, this quote from Malcolm X captures much of the essence: “If you stick a knife in my back nine inches and pull it out six inches, there's no progress. If you pull it all the way out that's not progress. Progress is healing the wound that the blow made. And they haven't even pulled the knife out much less heal the wound." I understand these things take time. No change happens over night. But we should be able to be honest about where we sit.

And here's the shirt, which I share not to start a discussion of politics, but because of the humor and the attitude. (I recognize that political discussions are verboten, so feel free to delete this bit mods if times are too delicate for this example: https://www.independent.co.uk/news/...ands-too-small-joke-border-wall-a8293986.html

 

[Allele]

Beautifully said, @Mfairma. And thank you for your work on 30 Years of Disdain.

 

[Jonathan Edwards]

I am comforted to think that actually we all agree much more than it seemed. It is so easy to misread what people are saying and equally easy not to get a message completely clear.

I very much agree that now is the time for advocacy to change into a higher gear. It is still worth second-guessing what some of the bureaucrats are likely to do but with luck even that will be less critical in the fairly near future.

 

[Hoopoe]

In my view the militant activist narrative is meant to discourage patients from speaking out. It is an attempt to manipulate our behaviour. They fear an uprising and that is exactly what is happening in some limited fashion. This uprising has still room to grow.

The public sympathizes with oppressed victims. The narrative of the unreasonable militant activists can also turn into a narrative of the oppressed victims who are rising up against theirs oppressor to hold them accountable.

I think that we shouldn't be afraid of this direction. The PACE authors were smart to preemptively put out the militant activist narrative. I think this hurt our cause mainly because their connection to the SMC let them reach a large audience and because they did so before patients could properly organize criticism, not because the essence of this narrative is intrinsically not in our favor.

Ultimately the difference between a bad and good activist is more that the good activist is right (has good arguments and is fighting for a good cause).

 

[Alvin]

In my view the militant activist narrative is meant to discourage patients from speaking out. It is an attempt to manipulate our behaviour.

Actually its an attempt to paint us as bad people so when we speak anything we say is filtered through that lens.
Often the person who speaks first sets the narrative in a conversation, so the idea is if they paint us as liars or worse then anything we say is held to that standard. Its actually a trap which we can fall for on ideological grounds or we can see through it and adjust our strategy to not fall for it. In a hunt for evidence anything you say can and will be used against you and the idea of calling us militant or similar is to suggest we are not worthy of being listened to, if our words can be used to "confirm" that narrative it will be done, so we can pretend we don't care and give them what hey want to undermine us with or we can not fall for their trap and work smarter to defeat the ones who want to harm us.
When your fighting an adversary who is more powerful then you you have to be extra careful because they hold stronger cards then you do. Falling into traps won't help us no matter how much we want to hope we have equal footing. I know this is a complicated and unpopular concept.