Trial By Error: Some Thoughts About an Upcoming Article

[Paul Watton]

I think you should consider typing these notes up into as verbatim an account as you can, so that you're in a position to quickly respond if you feel you've been misrepresented when this article eventually sees the light of day. Hopefully you won't need to, but it's better to be prepared.

Yes, I've already done that. Four type-written pages !!

 

[Stewart]

But this is exactly what they are doing, they are claiming threats have been made as a tactic to discredit us and legitimate science.

I haven't been as clear as I could have been - sorry.

It's one thing to say to the media "I have received threats and have passed them to the police". That's vague and unspecific - any individual who has sent you a threat has no way of knowing whether you're talking about their particular letter/email/voicemail. But if you say instead "I have received this specific threat - and here are the details for you to publish verbatim" - in this case the sender *knows* that you're talking about them, and the knowledge that their threats have had an impact on you might well encourage them to take things further.

So if you *had* received death threats you might understandably choose to be vague about the details, while pointing journalists to other, less serious examples of people bad mouthing you in public as evidence of the opprobrium you're being subjected to. Of course this is also how you might behave if you hadn't received any death threats but wanted to persuade people that you had...

We obviously have our suspicions about which of these explanations is correct - but at this point it's impossible for us to prove one way or the other.

 

[Adrian]

Perhaps. But this was a court with rules on what's allowed into evidence. And frankly my sense is that the QMUL lawyers were pretty stupid and not on top of things.

I was thinking that. They are so used to being believed that they thought referring to a story in the guardian and collecting quotes from PR would be sufficient. However, if their lawyers were not on top of things that is pretty damning for the legal profession as they came from a top (and expensive) law firm. But perhaps the lawyers didn't really believe that was a strong argument - I suspect the worried about the whole strength of the QMUL case.

 

[rvallee]

I have read @Valerie Eliot Smith's recent posts. Valerie has been an incredible help to me over the last 3+ years. Despite her poor health, she vetted multiple versions of my initial 15,000-word investigation and multiple posts afterwards. She has been scrupulous in advising me on what kinds of expressions are allowable under UK standards (different from US) and what are not. I trust her 100%. If she says she saw a video and it contained what can only be called criminal threats, then that's what it contained. I see no reason to think she is so naive that she was hoodwinked or somehow played by anyone.

Added: Oh, she and her husband also suggested the name "Trial By Error." So I am grateful to her for that as well!

It's possible that it exists. But there is an overabundance of medical professionals who say they have experienced their share of abuse, it seems to be the norm. I don't know why but some people are like that and since medicine deals with the whole human population, they will naturally experience the worst of it.

Video game publishers routinely receive death threats for featuring female characters. The bar for this kind of behavior is very low. Anyone working in customer service will have experienced self-entitled people threatening to punch someone if their expired coupon isn't honored and get the manager here ASAP.

It's still irrelevant what one individual did. It's irresponsible to even hint at guilt by association any more than all blonde people should be considered guilty of any one blonde person's felonious behavior. IMO it's indicative of a guilty conscience when you have to resort to this kind of tactics. Psychosomatic ideologues don't exactly trip over each other apologizing for the well-documented historical abuse of patients at the hands of their predecessors, an actual licensed profession with a high degree of organisation. Because there is no guilt by association here.

That and quite frankly many of them are pretty caustic and condescending. It wouldn't surprise me if they draw more than average negative reaction out of other people in general. Sharpe in particular is a seriously contemptuous jackass with obvious disregard for his patients' welfare. Nothing that deserves actual threats from anyone, but it shouldn't be a surprise that he is disliked by most people unfortunate enough to be his patients.

They're also literally destroying our lives, so I'd say overall our behavior is pretty admirable. AIDS advocates likely don't think much of HIV deniers either.

 

[Adrian]

I realise that I am myself discussing the video but my impression is that none of us should now be mentioning it. I don't think VES's motivation for mentioning it makes sense. It helps nobody and might do untold harm.

To me there is little point in discussing a video that none of us have scene and isn't really relevant to the community.

There may or may not have been threats but they come from individuals not the ME community. I don't think any of us want violent solutions I've never seen any support in the ME community for such things.

 

[Seven]

I haven't been as clear as I could have been - sorry.

It's one thing to say to the media "I have received threats and have passed them to the police". That's vague and unspecific - any individual who has sent you a threat has no way of knowing whether you're talking about their particular letter/email/voicemail. But if you say instead "I have received this specific threat - and here are the details for you to publish verbatim" - in this case the sender *knows* that you're talking about them, and the knowledge that their threats have had an impact on you might well encourage them to take things further.

So if you *had* received death threats you might understandably choose to be vague about the details, while pointing journalists to other, less serious examples of people bad mouthing you in public as evidence of the opprobrium you're being subjected to. Of course this is also how you might behave if you hadn't received any death threats but wanted to persuade people that you had...

We obviously have our suspicions about which of these explanations is correct - but at this point it's impossible for us to prove one way or the other.

As I remember, in court they could not produce any evidence of such threats, and in court transcript was said that claims were exaggerated and was not real at all. So we can use the court transcript ( I think was on the Aleem case when they tried to hold back the FOIA requests where the judge was clear that not such threat ever existed)

 

[rvallee]

The real story about these tweets to Sharpe is that he sought debate with sick and easily stressed patients and behaved rudely and dismissively.

I am pretty familiar with Internet trolling culture, it's a bit of a hobby of mine to study how it influences politics (extremely relevant to the politics of the past 3 years) and public discourse in general. It's fascinating for so many reasons. It's a culture that seeks to aggravate people, to provoke them into anger just for the hell of angering people. The whole point is to derail rational discussion, basically the equivalent of throwing a dead cat on the table during an argument. Whatever the argument was before, now everybody's talking about the dead cat on the table.

What Sharpe has been doing on Twitter is 100% trolling meant to aggravate and anger us. It's pretty heavy-handed, even, not at all subtle. He seems to get a kick out of it and it frankly hints at the rest of his behavior.

Whatever that means is for him, that's his choice. But that it's meant to anger people is obvious. We saw the same thing with Blanchflower insulting and name-calling everyone. Nearly every one of his tweets had one or more insults. Trolls do not mature with age, they keep the same behavior their own lives, whether in a professional setting or trash-talking someone else's mother on XBox live.

 

[dave30th]

It's still irrelevant what one individual did. It's irresponsible to even hint at guilt by association any more than all blonde people should be considered guilty of any one blonde person's felonious behavior.

I agree 100%.

 

[ukxmrv]

David and all,

I'd like to pick up one point from "Trial by error: some thoughts about a upcoming article"

"Some of the controversy over my work, I suspect, relates to trans-Atlantic differences in what is considered robust expression of opinion and what is considered over-the-line.."

Don't know if anyone saw the recent Panorama program "Killed in Hospital" shown on the BBC recently.

If you can view some of it you will notice "robust" interviewing of possible witnesses and the doctor and her husband involved in this.

An NHS manager is shown being questioned here by following him from his home to his car at 20:00 minutes



Also Dr Barton being approached by a reporter at home and hiding in her garage at 13:53

The approached again when out for a walk at 27:00

I'm not sure if this is view-able out of the UK sorry. If you are able to see this it may serve to demonstrate the UK journalists working for the BBC are quite capable of robust and quite intrusive public questioning when they want to.

 

[ScottTriGuy]

They're also literally destroying our lives, so I'd say overall our behavior is pretty admirable. AIDS advocates likely don't think much of HIV deniers either.

I think far, far more of HIV deniers than I do of the ME deniers.

The former are delusional. The latter are profiteers.

 

[Alvin]

It's still irrelevant what one individual did. It's irresponsible to even hint at guilt by association any more than all blonde people should be considered guilty of any one blonde person's felonious behavior. IMO it's indicative of a guilty conscience when you have to resort to this kind of tactics. Psychosomatic ideologues don't exactly trip over each other apologizing for the well-documented historical abuse of patients at the hands of their predecessors, an actual licensed profession with a high degree of organisation. Because there is no guilt by association here.

This is the point, they want to make us look bad by association which makes them the visionaries toiling in the face of insurmountable odds.
They are the heroes of their own story.

As I remember, in court they could not produce any evidence of such threats, and in court transcript was said that claims were exaggerated and was not real at all. So we can use the court transcript ( I think was on the Aleem case when they tried to hold back the FOIA requests where the judge was clear that not such threat ever existed)

What Sharpe has been doing on Twitter is 100% trolling meant to aggravate and anger us. It's pretty heavy-handed, even, not at all subtle. He seems to get a kick out of it and it frankly hints at the rest of his behavior.

I suspect he believes his own assertions, he most likely feels persecuted by having to face reality.
Its also strategy to get us to give him what he needs to discredit us.

I think far, far more of HIV deniers than I do of the ME deniers.

The former are delusional. The latter are profiteers.

I agree with a but, i imagine there are many snake oil salesmen in the HIV world, but they are far less successful since HIV has confirmatory tests and legitimate treatments.
HIV snake oil shysters are easily disprovable whereas this is an attempt to make lies official legitimate policy. The LP and other gimmicks are a contrast to nothing whereas snake oil is contrasting antiretrovirals. Plus add in an assist from the Lancet and a few medical journals who would never be able to sustain printing CBT as an HIV treatment.

 

[Barry]

It was a backbench debate late on a Thursday afternoon when everyone else was off having cocktails or engaging in pre-theatre lovemaking sessions.

What ... in the Houses of Parliament!

 

[Liessa]

I suspect he believes his own assertions, he most likely feels persecuted by having to face reality.

I was looking at this page listing potential cognitive biases, and while I can see lots of them applying in one way or another to the whole BPS situation, the one that stood out was the 'just world hypothesis'.

The idea that the world is fair seems to play a large role not only in the theory behind CBT/GET, but also in why people buy into it. After all, if you make the effort, you 'deserve' to get better, and surely that is what will happen, right, right, Right?! (and inversely, not getting better must mean you did something wrong).

The fact that bad things can happen to good people is just not something people want to think about. That makes it so much harder to get away from this nice-sounding narrative that is, sadly, simply not how this works.

 

[Barry]

The idea that the world is fair seems to play a large role not only in the theory behind CBT/GET, but also in why people buy into it. After all, if you make the effort, you 'deserve' to get better, and surely that is what will happen, right, right, Right?! (and inversely, not getting better must mean you did something wrong).

A bit like the "you're worth it" cosmetics advertising strategy. i.e. You are worthy person and deserve to spend lots of money on yourself (but only if it's spent on our products). Takes a worthy aspiration and distorts the message to favour a particular vested interest.

 

[Alvin]

I was looking at this page listing potential cognitive biases, and while I can see lots of them applying in one way or another to the whole BPS situation, the one that stood out was the 'just world hypothesis'.

The idea that the world is fair seems to play a large role not only in the theory behind CBT/GET, but also in why people buy into it. After all, if you make the effort, you 'deserve' to get better, and surely that is what will happen, right, right, Right?! (and inversely, not getting better must mean you did something wrong).

The fact that bad things can happen to good people is just not something people want to think about. That makes it so much harder to get away from this nice-sounding narrative that is, sadly, simply not how this works.

Not so many centuries ago illness of any kind was viewed as punishment from God for your sins. And this could not be disproven in most cases because the technology of the time was not up to the task.
Today if they tried to cure for example cancer with CBT they would be cashiered from their profession.
We have no biomarker or treatment so they think they can get away with believing their own lies.
Even in recent history Narcolepsy was thought to be caused by bad childhood experiences. The treatment was dream analysis. The discovery of stimulants helped the biomedical explanation along but it was the discovery of a neurochemical and proof that its deficiency causes Narcolepsy is what was needed to destroy the trauma theory. This was less then 20 years ago
I get what your saying and i agree to a point. I don't think they believe that just world theory explains ME but they do think its a form of learned helplessness that they need to break.

 

[Arnie Pye]

I'm a bit hard-of-hearing and didn't yet have my great new Bose hear-phones (yes, hear-phones, for anyone with mild to moderate hearing loss not yet ready to spend thousands of dollars on hearing aids: https://hearphones.bose.com).

Off-topic, but I got quite excited when I read this (I'm very deaf) and went looking for them. Unfortunately I got the message that was approximately... "You're in the UK, get lost, we don't sell to the likes of you".

 

[MSEsperanza]

What would really infuriate me though, is if an article came was to come out which quoted my tweet, but then made no mention of all the other stuff I was at pains to explain to the reporter

As @Esther12 said, that's exactly how some journalists work. I think it's important to be aware that there is no safeguard against it.

 

[Liessa]

A bit like the "you're worth it" cosmetics advertising strategy. i.e. You are worthy person and deserve to spend lots of money on yourself (but only if it's spent on our products). Takes a worthy aspiration and distorts the message to favour a particular vested interest.

Yes exactly.

Not so many centuries ago illness of any kind was viewed as punishment from God for your sins. And this could not be disproven in most cases because the technology of the time was not up to the task.
[...]
I get what your saying and i agree to a point. I don't think they believe that just world theory explains ME but they do think its a form of learned helplessness that they need to break.

I think we fully agree My point was not "this is what people are convinced of rationally", but that a sense of "that's how we wish it would be" is enough to colour peoples receptiveness for explanations that fit this. This is normal, and the reason we should learn about biases, so we can evaluate our thoughts against them. But how many actually do that?

My reason for bringing this up is because I think this is another layer of what we're up against. It's not just the dry "is this valid science" question, but also that people want to believe 'experts' are right, that 'science is self-correcting', that 'some treatment is always better than no treatment', that all those involved are never influenced by other interests (DWP ties anyone?) and, of course, that we could just cure ourselves if we would just prove ourselves worthy by making the effort. If only.

Challenging those concepts causes a lot of cognitive dissonance. So it is probably useful to be aware of those aspects in communication. I know many (most?) here are aware of such factors when reading articles etc, but most in 'the public' are not, and that's something to keep in mind.

 

[Yvonne]

I have not fully followed this thread, so I apologise if I'm posting this in the wrong place. But with regard to any allegations of death threats or other forms of alleged harassment by ME patients against professionals, I have never understood how senior professionals get away without being challenged as to their judgement by making such behaviour public, even if they are true.


Medical professionals, in particular, have a duty to treat patients with respect. The onus is on the professional in the doctor-patient relationship to uphold standards, not on the patient. Talking about alleged death threats or other harassment by patients in public, is surely an abuse of their professional position.


In fact, the Science Media Centre conducted a media campaign, involving the BBC and mainstream media, to discredit ME patients as extremists, using animal extremism as a model, and to portray researchers as their beleaguered victims. The SMC wrote about this campaign quite blatantly in its brochure. Medical professionals who took part in this campaign were, in my opinion, abusing their professional position. I think that senior medical professionals who took part in this campaign should have been disciplined over this.


In summary, our focus should not be on the harassment, and whether it took place or not, but on whether it is ethical for professionals to talk about it in public.

 

[WillowJ]

Indeed. It seems that the potentially most offensive messages are kept secret. if they were not, we could denounce them.

We have denounced the idea of such very offensive messages, again and again. So have many ME charities. I don't know what more anyone could expect.

(edited for clarity)

Further edit: As verbal abuse by other individuals has nothing to do with us, this was really more than could reasonably expected already. But we took the high road. Because we can.