Trial By Error: Some Thoughts About an Upcoming Article

[dave30th]

It's difficult to explain why such a video was not presented as evidence during the QMUL PACE data tribunal hearing, and why Chalder admitted that no threats had been made.

Wessely was not a party to the tribunal hearing. The tribunal found no evidence for the PACE authors claims of threats. It said nothing about anyone else, so it is irrelevant to the question.

 

[Paul Watton]

Unfortunately, the situation and prejudices surrounding ME/CFS means that the average sick patient, angry about the way they are being treated, is given much less leeway in how they can comment on those who have power over them than general members of the public are in how they comment on politicians and the like.

Things that we say, that would be utterly un-noteworthy coming from another group about some politician, can be used as a justification for dismissing our concerns and make life more difficult for other patients. It's worth pointing out the problems with this, but I also think it's worth being aware of the way in which we face higher costs than most groups for posting some expression of anger or frustration.

Point taken @Esther12
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 - on topics which are discussed at length on this forum: e.g. the importance of adhering to the scientific method when conducting research and, as a researcher, adopting a healthy scepticism about your own hypothesis, testing it rigorously, and not doing stuff to in order to ensure that your research delivers a predetermined outcome.

 

[Alvin]

Wessely was not a party to the tribunal hearing. The tribunal found no evidence for the PACE authors claims of threats. It said nothing about anyone else, so it is irrelevant to the question.

Thats the thing, their side is using claims of threats as an excuse to harm patients. If they were to actually get one it would be used as proof they are right about their lies being scientific.
I do agree with your earlier post that the police may decide not to prosecute but the point is they are using this as a wedge issue to divide and conquer, they are heroes under constant attack by us because we are evil. I'll even bet money they believe what they are saying, we are attacking their faith with facts. Thats not a nice position for them to be in and they are fighting back with anything they can make stick.

 

[Hoopoe]

Wessely was not a party to the tribunal hearing. The tribunal found no evidence for the PACE authors claims of threats. It said nothing about anyone else, so it is irrelevant to the question.

Wessely was PACE trial centre leader and is acknowledged as having contributed to the trial design. I cannot imagine that the PACE authors would not have taken the opportunity to present evidence of death threats to the tribunal (even if the threats were only against someone that played a minor role). Source: page 36 here http://informationrights.decisions....iversity of London EA-2015-0269 (12-8-16).PDF

Anyway, it's irrelevant because it's obvious this is just an attempt to smear people making scientific criticism.

 

[dave30th]

I thought @chrisb was referring to the journalist, not to Valerie.

The problem some of us found with Valerie's investigation into the threats was not whether she was honest or not. I am sure none of us have any reason to doubt her integrity and we are all very grateful that she has been such a terrific help with your work.

It was rather puzzlement over what purpose she thought she was serving in digging into the threats, and the strategy she proposed for following up her researches. It seemed to me, and to some others that her approach was unwise.

Chris was referring to both, as I read it. I took the reference to "previously unknown video evidence" or whatever the phrase was to be a reference to Valerie's posts.

I completely understand having a discussion about whether the approach Valerie suggests is the right approach. I assume she posted to provoke that kind of discussion. Whatever the truth, the threats or alleged threats have obviously been blown way out of proportion, hyped into the stratosphere, and used to deflect the fundamental points about how bad this research is, as Edwards noted.

I have no idea, really, what the best approach is. But why dig into the past like this? Well, for my reporting purposes I'm glad to have confirmation that such a tape existed. Of course it has nothing to do with the ME community or with anything except that individual who made it. If I write more about the alleged "harassment" issue, it is helpful to know what has happened so I can phrase things accordingly.

 

[dave30th]

Wessely was PACE trial centre leader and is acknowledged as having contributed to the trial design. I cannot imagine that the PACE authors would not have taken the opportunity to present evidence of death threats, even against someone that has only played a minor role in it.

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. Without knowing details that are not available to us, all we can take from the court hearing is that the court saw no evidence of harassment or threats against the PACE authors. Whatever Simon's role, he was not a PACE author.

 

[dave30th]

the point is they are using this as a wedge issue to divide and conquer, they are heroes under constant attack by us because we are evil. I'll even bet money they believe what they are saying, we are attacking their faith with facts. Thats not a nice position for them to be in and they are fighting back with anything they can make stick.

I agree 100%. They have used this issue in a disgraceful manner--regardless of the existence, or not, of such a tape.

 

[Esther12]

Thats one way bullies keep themselves on top, by pretending to be the real victims and using double standards to keep their actual victims down.

Yes. And when a stigmatised group is trying to challenge powerful people who are misusing their power it's helpful to be very careful and thoughtful about what we do and say - although I acknowledge that this is an additional burden on patients who already have more than enough to deal with.

Also, we're not a healthy group with a lot of health allies. Where as some other rights campaigners have been able to use confrontation to effectively draw attention to the problems they face, and make it clear that ignoring them is not an option, that's really not a strategy that suits us. We can only make progress by persuading the undecided, and that is going to take some care and caution.

Point taken @Esther12
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 - topics which are discussed at length on this forum: e.g. the importance of adhering to the scientific method when conducting research and, as a researcher, adopting a healthy scepticism about your own hypothesis, testing it rigorously, and not doing stuff to in order to ensure that your research delivers a predetermined outcome.

Absolutely. Sadly, when I post I now try to remember that some reporters are going to behave in infuriating ways that mislead readers! I'm sure I still make mistakes and say things that could be taken out of context, but I think that so much as possible it's worth trying to encourage a culture of caution amongst as many people as possible concerned about PACE etc.

It's in the interests of some very important and influential people to avoid discussing the details of our concerns by focusing on problems with the tone that some people use. That's annoying and unreasonable, but it's just the way that things are.

 

[Jonathan Edwards]

I had previously assumed it was likely that this video has remained mysterious because Wessely and colleagues were advised that it should not be discussed - probably because the author was deemed to be mentally ill. If that were the case it was clearly irresponsible for Wessely even to hint at it in the form of a 'death threat' and accept a prize for his standing up to it. If it should not be discussed it should not be alluded to, because prurience will inevitably drag it up again.

But another likely possibility has occurred to me. The author might be the parent of someone seriously ill with ME. In that case the reason for not discussing the video would be to protect the minor. They would no longer be a minor probably but still deserve protection. In this context it is even more important that there is no further discussion of the video, because someone is likely to dig up who the author really is and put it on the net, like the identity of 'Jon Venables'.

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.

 

[MSEsperanza]

While I have been writing my post the thread has been moving forward and I'm not able to catch up with it. Anticipated apologies for being redundant

I was contacted by a journalist in early September last year, following a tweet I posted in March, where I expressed the view that "I am really looking forward to Michael Sharpe's professional demise and his much-deserved public humiliation."

As much as I dislike the above quoted tweets (both MS' tweet and the second sentence of Paul's answer) I question that there is a "battle between patients and researchers".

I think journalists (as well as medical professionals) should be able to differentiate. Yes, many pwME are angry with some particular researchers because they don't see the enormous harm they caused and are not willing to acknowledge the rational arguments rebutting their research and medical/ psychological practice. And then there are all kinds of irrational, pseudo-scientific and stupid comments on social media made by all kinds of people, on all kinds of topics--also on ME.

Also, I think most of us appreciate when journalists have a substantial interest to paint a more differentiated picture of people suffering ME, caring for pwME, researching ME, debating research on and clinical practice of ME. When a journalist asks people what they meant when wording tweets like the quoted, it might indicate such an interest.

However, assuming a dualism between patients and researchers, as a couple of journalists and PACE defenders still do--and according to Paul Watton, this particular reporter chose as topic for an article--makes it likely that their substantial interest is not to differentiate and to investigate what the "battle" is actually about. And the questions the (presumably) same reporter asked David and Professor Racaniello were pretty self-revealing in this respect, too.

I will refrain from further speculations now and endorse Ravn's post:

https://www.s4me.info/threads/trial...t-an-upcoming-article.7944/page-5#post-140414

(I am not able to word why I don't like both tweets atm - just want to add that I don't think it is justified to see Paul's tweet as harassment or threat. I think this tweet is not helpful in terms of advocacy, but nobody on twitter is obliged to only post helpful tweets.)

 

[dave30th]

I was surprised that Carol Monaghan's story of the 8 year old being left in a wheelchair by NHS treatments did not make the headlines. It has everything the press loves.

It was a backbench debate late on a Thursday afternoon when everyone else was off having cocktails or engaging in pre-theatre lovemaking sessions. It is not really at all surprising there was no coverage.

 

[Stewart]

I subsequently made notes about the near hour-long telephone conversation and have kept a record.

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.

Was there not a situation a while back where they claimed to receive threats but could not furnish any evidence?

The only time (that I'm aware of) when they've been asked to provide evidence of threats (and were apparently unable to do so) was during the ICO tribunal hearing. When pushed on this point during witness testimony, Trudie Chalder apparently admitted that while unpleasant things had been said/written about the PACE team, no threats had been received. On other occasions the 'evidence' that they've used as proof of harassment has turned out to be nothing of the sort - for example Esther Crawley's continued presentation of the Sunday Times magazine cover as though it was an actual threat that she'd received.

But while all of this undermines the 'threats' narrative it doesn't completely disprove it. If you've received what the police consider to be a credible threat, then publicising it is probably the worst thing you can do. It's understandable that they wouldn't make the specific details of any threats they've received public - however the absence of any credible evidence in the public domain also makes it difficult (if not impossible) for anyone else to comment meaningfully on the allegations that they've made.

And frankly my sense is that the QMUL lawyers were pretty stupid and not on top of things. Without knowing details that are not available to us, all we can take from the court hearing is that the court saw no evidence of harassment or threats against the PACE authors. Whatever Simon's role, he was not a PACE author.

I agree with you that QMUL's team didn't have their act together - but it's worth pointing out that Chalder apparently said at the hearing that no threats had been made against PACE researchers or trial participants - not just the authors. That's obviously a far broader category, and one that Simon almost certainly falls into (despite his recent claims that he had no involvement at all with PACE...). But again - the fact that Chalder apparently implied Simon hadn't received any death threats obviously doesn't make it the incontrovertible gospel truth.

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.

I agree. None of us know enought about this video to meaningfully discuss it or cite it as evidence for any point we might wish to make. I think it was deeply unhelpful for Valerie to write about it, given that her duty of confidentiality prevented her from going into any real detail about it. There are enough unevidenced allegations of harassment flying around already - we don't need any more.

 

[Hoopoe]

The real story about these tweets to Sharpe is that he sought debate with sick and easily stressed patients and behaved rudely and dismissively. He did this for several months and in that timeframe got hundreds of responses which included some angry ones. That he now uses as evidence that critics are unreasonable. Hardly a victim of harassment.

 

[Alvin]

I have no idea, really, what the best approach is. But why dig into the past like this?

Of course their goal in this is to side rail us and keep people from taking us seriously. They are using a lesson from politics, if you keep repeating the same lie over and over and over people start to believe it. Could a response be to remind readers of this tactic and that its used by people who can't defend their science?

Yes. And when a stigmatised group is trying to challenge powerful people who are misusing their power it's helpful to be very careful and thoughtful about what we do and say - although I acknowledge that this is an additional burden on patients who already have more than enough to deal with.

Indeed, we have to have our hands extra clean. When Mahatma Gandhi was using his civil disobedience to win independence he knew that any missteps would be used to discredit his side so by accepting abuse instead of using force he showed that he was in the right and that it was the other side that was the aggressor. He basically shamed them into leaving by having them hang themselves with their own actions.
We don't have the numbers to do the same but we do have the facts on our side. But that also means we are more susceptible to lies and smears.

Also, we're not a healthy group with a lot of health allies. Where as some other rights campaigners have been able to use confrontation to effectively draw attention to the problems they face, and make it clear that ignoring them is not an option, that's really not a strategy that suits us. We can only make progress by persuading the undecided, and that is going to take some care and caution.

I agree, but we have to eitehr live with being harmed or use what we do have to get to reality.

Absolutely. Sadly, when I post I now try to remember that some reporters are going to behave in infuriating ways that mislead readers!

I think journalists (as well as medical professionals) should be able to differentiate.

Unfortunately reporters are human. They are not beings of pure logic that weigh all information without emotion and can filter out all irrelevancies. They have biases and respond to social hierarchies just like their readers. So i suspect they think they are doing the right thing when in fact they are just appeasing authority.

I had previously assumed it was likely that this video has remained mysterious because Wessely and colleagues were advised that it should not be discussed - probably because the author was deemed to be mentally ill. If that were the case it was clearly irresponsible for Wessely even to hint at it in the form of a 'death threat' and accept a prize for his standing up to it. If it should not be discussed it should not be alluded to, because prurience will inevitably drag it up again.

But they are not ethical so all the ethics in the world mean nothing unless they face sanction from their superiors or the law

 

[dave30th]

Chalder apparently said at the hearing that no threats had been made against PACE researchers or trial participants - not just the authors.

I was at the hearing. It's true she included participants. I did not get from what she said that it would include non-authors but 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). As I read it, the Tribunal statement about this applied to PACE authors. People might wish to interpret this as including Sir Simon, but I think that would be a mistaken interpretation.

 

[Alvin]

The only time (that I'm aware of) when they've been asked to provide evidence of threats (and were apparently unable to do so) was during the ICO tribunal hearing. When pushed on this point during witness testimony, Trudie Chalder apparently admitted that while unpleasant things had been said/written about the PACE team, no threats had been received. On other occasions the 'evidence' that they've used as proof of harassment has turned out to be nothing of the sort - for example Esther Crawley's continued presentation of the Sunday Times magazine cover as though it was an actual threat that she'd received.

But while all of this undermines the 'threats' narrative it doesn't completely disprove it. If you've received what the police consider to be a credible threat, then publicising it is probably the worst thing you can do.

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

It would be interesting to have a reference of all the times they have claimed this and how many times they have been able to produce bupklis when pressed to provide evidence. They are acting in bad faith twice.

 

[large donner]

I'm only talking about the Wessely tape that Valerie wrote about. I'm not talking about any of the other alleged threats. In some cases you might want to keep information private for safety, or you might be advised by the police to do so. I have no knowledge of any of this stuff. But I trust Valerie. If she says she saw a video that had been sent to Wessely and it contained possibly criminal threats, then there was a video that was sent to Wessely that contained possibly criminal threats.

Did the person on that video identify themselves or show their face or was it just a voice making the alleged criminal threats? Was the video on a tape sent in the post or was it done online?

By any chance was it an artist impression of a what a threat could have looked like if it did happen like the one in the Times.

 

[TiredSam]

Did the person on that video identify themselves or show their face or was it just a voice making the alleged criminal threats? Was the video on a tape sent in the post or was it done online?

We aren't talking about the video.

 

[large donner]

We aren't talking about the video.

We aernt? What are we referring to then regarding Valerie seeing a tape of alleged criminal threats?

 

[TiredSam]

Well it has been suggested that it's not helpful to carry on discussing it:

I realise that I am myself discussing the video but my impression is that none of us should now be mentioning it.

I agree. None of us know enought about this video to meaningfully discuss it or cite it as evidence for any point we might wish to make. I think it was deeply unhelpful for Valerie to write about it, given that her duty of confidentiality prevented her from going into any real detail about it. There are enough unevidenced allegations of harassment flying around already - we don't need any more.

And the conversation has now moved on to much more interesting matters:

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