FoI request regarding an 'activist list' in the Sunday Times Magazine in May 2013

[Stewart]

There is a difference between playground talk, and some stranger sending you an anonymous email making such threats. It could be an idle threat, or it could be someone with serious intent. You don't know. That's what makes such a threat effective: it creates worry because you don't know if it is serious or not.

Prof Wessely had his mail X-rayed by security staff and has had panic buttons installed in his office and home. Cleary he was fazed.

And let's be frank: ME/CFS we may class as a neurological diseases, but some ME/CFS patients do suffer from comorbid mental health problems; so that makes any death threat all the more worrying, as it may come from someone who is not thinking rationally anyway.

Sure, but I don't think Simon Wessely would risk his reputation by publicizing in national newspapers that he received death threats if this was lie. These days lies have a habit of coming back to bite you on the bum, so I don't think any sensible person would make up such a story.

To me his story sounds very plausible, especially given the way that electronic media have made death threats much more common. I would perhaps be more surprised if Wessely had not received email abuse and death threats.

I would be willing to believe that SW had received death threats were it not for the fact that he seems to have a history of taking things that quite clearly aren't death threats and trying to present them as though they are.

Additionally you would have thought that if he had received any credible death threats - and if the police had been involved, as he also claims - then evidence of this would have been presented to the Information Tribunal to support Team PACE's 'dangerous activist' narrative. But no such evidence was presented and instead Trudie Chalder told the Tribunal that no threats had been made to PACE researchers - and Wessely was a PACE researcher, regardless of how much he tries to publically give the impression that he wasn't.

The very existence of such a list was what I questioned the MPS over.

As much as I do not trust Wessely, and I know that he is essentially the 'star' of the article, we have no definitive proof that he is the author of any such list. Doesn't mean to say that he's not responsible, mind you.

According to Hanlon the MPS does have a unit to monitor such activism:

"There is, I am told, a specialised unit at the Metropolitan Police dedicated to monitoring the threat"

so it suggests to me, *if* Hanlon was correct, that the MPS would not be above spending a few hours compiling a list. Again, I'm not saying that they themselves did, it's just that it's almost being assumed that Wessely did. And we have no cast iron proof of that.

Either way, and as much as I didn't trust Hanlon (he approached me for an interview for the article in November 2012 but I was, for once, wise enough to completely ignore him, not answering his email), I'm assuming that there is a list. We just have to fully confirm the existence of it. Easier said than done etc.

A few questions would no doubt follow if we we able to get confirmation.

Maybe, as a first step, you could try to get clarification of whether there is (or ever has been) a specialised unit at the Met Police monitoring the 'ME activist' threat. Hanlon wrote that he was 'told' that such a unit existed - but he went on to add that "...no one at Scotland Yard will speak publicly about this" which strongly suggests he wasn't getting this information from the police. If there's never been a specialised unit, then they obviously can't have been responsible for compiling any lists...

(Also you might want to try and get a pdf or screen grab of The Times article to send to the Metropolitan Police - from their reply to you I suspect that they don't have an online subscription to The Times and aren't prepared to pay for one...)

 

[Binkie4]

Remember that when Trudi Chalder was questioned under oath at the Information Commissioner's Tribunal and asked about harassment, she said she had only experienced being heckled by one person at a seminar, and I think she said ( but this would need checking) that she did not know of any instances relating to others.

Also when photos of Crawley giving a lecture were posted, it was clear that FOIs were regarded as harassment.

The Wessely stuff is odd. He claimed extreme harassment/death threats in 2011/12 but I don't think a police report was made. I felt very ashamed at the time as a pwme although at that stage my total advocacy consisted of reading InterAction. Didn't Crawley recently make use of the same material?

EDIT: crossposted with previous post

 

[Hip]

but whenever we hear more context for the threats and harassment that they complain of, the more it seems that they have been spinning things to make it seem worse than it is.

I agree, they have milked the abuse story for quite a few years now, when as far as we know, this abuse only happened for a period back in around 2011. And it never materialized into any action, it was just email and social media abuse (except in the case of Micheal Sharpe, who was stalked by a woman).

I would be willing to believe that SW had received death threats were it not for the fact that he seems to have a history of taking things that quite clearly aren't death threats and trying to present them as though they are.

Can you give any examples?

I know Wessely has been somewhat dishonest and economical with the truth when it comes to explaining to newspapers why ME/CFS patients are so angry with him. He paints a "poor me, I've done nothing wrong", but fails to mention anything about the dire damage his involvement in ME/CFS has caused, as a result of him promoting the his views that ME/CFS is an "all in the mind" condition in which patients' own beliefs create the illness.

Wessely was a PACE researcher, regardless of how much he tries to publically give the impression that he wasn't.

His name is not in the list of authors of the PACE study, and I don't think he had any direct connection to the PACE research, though I guess may have played an informal advisory role.

He claimed extreme harassment/death threats in 2011/12 but I don't think a police report was made.

The police were involved, because according to the Guardian:

Wessely has installed speed dial phones and panic buttons at the police's request and has his mail X-rayed.

 

[Esther12]

except in the case of Micheal Sharpe, who was stalked by a woman).

We don't know if Sharpe was genuinely stalked by a woman, or if that 'stalking' entailed anything criminal, rather than just (for example) attending public lectures and asking difficult questions.

as a result of him promoting the his views that ME/CFS is an "all in the mind" condition in which patients' own beliefs create the illness.

I'm not sure you'll find a quote of him saying ME/CFS is "all in the mind": "They say we are denying its sufferers their treatment and benefits by falsely claiming that the condition is ‘all in the mind’, i.e. non-existent— which has never been our view." https://www.spectator.co.uk/2011/08/mind-the-gap-3/

His name is not in the list of authors of the PACE study, and I don't think he had any direct connection to the PACE research, though I guess may have played an informal advisory role.

He was a co-author of the draft CBT manual for PACE, and had various roles connected to PACE, but I wouldn't take the Tribunal ruling as gospel anyway. Probably best to be cautious in how we present its findings rather than risk going to far. @Stewart

 

[Luther Blissett]

Maybe, as a first step, you could try to get clarification of whether there is (or ever has been) a specialised unit at the Met Police monitoring the 'ME activist' threat. Hanlon wrote that he was 'told' that such a unit existed - but he went on to add that "...no one at Scotland Yard will speak publicly about this" which strongly suggests he wasn't getting this information from the police. If there's never been a specialised unit, then they obviously can't have been responsible for compiling any lists...

The specialised unit is the National Domestic Extremism and Disorder Intelligence Unit (NDEDIU). Scotland Yard's reluctance to speak publicly about it is due to it's controversial nature. (It hold details of non criminals) There is no such thing in law as a 'Domestic Extremist'. The databases are used for police surveillance/intelligence gathering of protesters of many kinds.

I would recommend asking the Network for Police Monitoring (Netpol) for advice on this @AR68. Their guide for making a Subject Access Request is here https://netpol.org/campaigns/dont-be-on-a-database/subject-access-requests-an-introduction/

There is no way they will release information about the databases in a FOI reply.

 

[BruceInOz]

Can you give any examples?

I believe someone once sent him the lyrics of the last verse of Bob Dylan's Master's of War which he interpreted as a personal death threat.

 

[Hip]

I'm not sure you'll find a quote of him saying ME/CFS is "all in the mind": "They say we are denying its sufferers their treatment and benefits by falsely claiming that the condition is ‘all in the mind’, i.e. non-existent— which has never been our view." https://www.spectator.co.uk/2011/08/mind-the-gap-3/

I just use the phase "all in the mind" as a substitute for the term "psychogenic". Perhaps it is not the most precise of substitutes.

Wessely's thesis is that ME/CFS patients hold a belief in their mind that they are ill, and this mere belief that maintains their illness. So in Wessely's view, it is the mind alone which creates the disease of ME/CFS.

 

[Hip]

I believe someone once sent him the lyrics of the last verse of Bob Dylan's Master's of War which he interpreted as a personal death threat.

Without seeing the details it's hard to judge. But in any case, given that the police were involved, and given it was the police who requested Wessely install panic buttons, I think we cab assume that the police must have assessed the threats as credible.

 

[WillowJ]

I think it makes more sense to complain about people who generalize an entire group of people rather than nitpick about details about particular events. Even the parties who feel like complaining about threats in the media have at various times admitted such activity would be only a very few people.

Yet it ends up being presented like this is a characteristic of people with a fairly common diagnosis. That should be our main concern, IMO.

Regardless of what the details of what precisely happened, generalizing to an entire group of people who have nothing in common except a disability, could fairly be characterized as ableism.

 

[Binkie4]

Without seeing the details it's hard to judge. But in any case, given that the police were involved, and given it was the police who requested Wessely install panic buttons, I think we cab assume that the police must have assessed the threats as credible.

Have we got confirmation from the police that they were involved and requested Wessely to install panic buttons?
It was a very powerful 'story' in 2011. At that time I took it at face value and believed it absolutely. Now I do not accept such accusations uncritically. I prefer to see the evidence.

Did the Guardian have evidence from the police that they had advised panic buttons etc, or was this what Wessely told the Guardian? That article in the Observer either started or reinforced a very powerful narrative about vexatious and worse patients.

I did feel a genuine embarrassment in having ME at that time after the article.

 

[April]

Wessely used the threats as a distraction in 2011 when more information about the physical nature of M E was being presented.

 

[adambeyoncelowe]

Sorry, @Hip, but the articles you quote aren't evidence of anything. Wessely told his mate the police installed those things and had that data, but there was no confirmation from the police and his friend is now too dead to verify it. Journalists lie or rely on vague wording to imply what they want to say without having to lie outright. Especially when they don't name or give a source, it means they're using hearsay or can't verify it. It's an old trick.

'A friend said...' (they probably didn't) 'A source said...' (which source?) In this case, it's all 'Wessely said...' but it's the same thing. He never said, 'The Met Police said...' It's worded in such a way so squirm out of any culpability ('I just reported as I was told by poor Sir Sly. I had no reason to doubt him...').

Satan is a liar and a conjurer too. (Hyperbole, perhaps, but I thought it was a suitable quote to paint a picture.)

 

[TiredSam]

We know from the PACE trial itself that the authors have a history of making claims on the basis of no evidence at all. I have no reason to believe anything they say about "harrassment" or "death threats" until one of them decides to break the habit of a lifetime and actually back up a claim with evidence.

 

[chrisb]

What's all this? Someone says they have a list? I'm appalled. Appalled. It's a death threat, I tell you. These allusions that they all like. Much less obscure than GBS.

Gilbert and Sullivan. The Mikado. Ko-Ko, the Lord High Executioner.

Of society offenders who never would be missed, I've got a little list, I've got a little list.

Of all those idle patients imagining they're ill,
and who take me for a ....., who take me for a .....
We've spent thirty years ignoring them, so they would not be missed,
I've got them on the list, I've got them on the list.

Feel free to insert a word of your choice in the spaces provided.

See, it's easy to find death threats once you start looking.

Mind you, I think someone might prefer the part of Poo-Bah, the Lord High everything else

 

[Esther12]

I just use the phase "all in the mind" as a substitute for the term "psychogenic". Perhaps it is not the most precise of substitutes.

Wessely's thesis is that ME/CFS patients hold a belief in their mind that they are ill, and this mere belief that maintains their illness. So in Wessely's view, it is the mind alone which creates the disease of ME/CFS.

I think that's actually being a bit unfair on him. Wessely often writes in such an evasive way that it can be difficult to summarise what he thinks, so I think it's probably best to try to rely on direct quotes.

Without seeing the details it's hard to judge. But in any case, given that the police were involved, and given it was the police who requested Wessely install panic buttons, I think we cab assume that the police must have assessed the threats as credible.

@maxwhd from twitter made this summary of that issue:

Also, I'm not sure that much can be read into a panic button, or actions by the police. Wessely is a well connected individual, working with the military, and he clearly knows how presenting himself as a scientist under threat from militants can be to his benefit. I don't think that we can assume that the police independently assessed the threat he was under, and would have provided similar interventions for someone else facing similar 'harassment' if they were not in a position of authority and influence.

 

[Stewart]

Can you give any examples?

Off the top of my head, the 2011 BMJ article (that kicked the abusive activist narrative into high gear) published an example of the 'threatening and abusive' emails that Wessely claimed to have received. Except it wasn't an email - it was an extract from an online blog post, and there's no evidence that it was ever emailed to Wessely. Most of the blog in question was a summary of a message board discussion of Wessely's motivations, with lots of references to various papers that he'd written - but all this was omitted and only the conclusion, in which the author called Wessely a 'despicable piece of shit' (or something like that), was published. The blog finished with the 'Masters of War' quote, which @BruceInOz mentioned above.

Was this blog abusive? Yes, undoubtedly. Threatening? No, not at all. And was it actually sent to Wessely? Well, as I've already said, there's no evidence to suggest that it was. Instead it looks like he went out hunting online for the worst abuse he could find. Which is a strange thing to do if you really are receiving substantial numbers of abusive and threatening messages, which he could presumably have presented as evidence with much less effort. And yet this blog extract is what he chose to give to the BMJ as an example of the threats and abuse that were being sent to him.

His name is not in the list of authors of the PACE study, and I don't think he had any direct connection to the PACE research, though I guess may have played an informal advisory role.

He wasn't one of the authors, but he ran one of the trial centres. And he was a member of the Trial Management Group which - according to the PACE protocol - means that he helped design the study and was responsible for the 'day-to-day running and management of the trial'.

The police were involved, because according to the Guardian:

But again, we only have Wessely's word for this. There's no indication in the article that the Guardian got any corroboration for these claims from the police.

I wouldn't take the Tribunal ruling as gospel anyway. Probably best to be cautious in how we present its findings rather than risk going to far. @Stewart

Personally, I think the lack of evidence that QMUL presented at the Tribunal is pretty compelling. The PACE team spent a lot of time and money over the years trying to prevent the trial data being released. If they had any convincing evidence to back up their argument that releasing the data would embolden 'dangerous activists', there's no good reason why they wouldn't have presented it. Instead they submitted a bunch of unsourced newpaper articles - which amounted to hearsay - and paid Professor Anderson to make speculative comments about 'borderline sociopaths'. If they could have easily proved their concerns had substance (by presenting evidence of death threats, police involvement, etc) they definitely would have done so. The fact that they didn't is pretty damning - Chalder's comments are just an admission of how much they've exaggerated the nature of the abuse they've received.

The specialised unit is the National Domestic Extremism and Disorder Intelligence Unit (NDEDIU). Scotland Yard's reluctance to speak publicly about it is due to it's controversial nature. (It hold details of non criminals) There is no such thing in law as a 'Domestic Extremist'. The databases are used for police surveillance/intelligence gathering of protesters of many kinds.

I would recommend asking the Network for Police Monitoring (Netpol) for advice on this @AR68. Their guide for making a Subject Access Request is here https://netpol.org/campaigns/dont-be-on-a-database/subject-access-requests-an-introduction/

There is no way they will release information about the databases in a FOI reply.

Luther - do we know for sure that Hanlon was referring to NDEDIU (ie have they ever gone on the record and confirmed that they have looked into ME activism) or is this just a (quite reasonable) assumption on your part?

 

[LightHurtsME]

Maybe, as a first step, you could try to get clarification of whether there is (or ever has been) a specialised unit at the Met Police monitoring the 'ME activist' threat. Hanlon wrote that he was 'told' that such a unit existed - but he went on to add that "...no one at Scotland Yard will speak publicly about this" which strongly suggests he wasn't getting this information from the police. If there's never been a specialised unit, then they obviously can't have been responsible for compiling any lists...

"...no one at Scotland Yard will speak publicly about this"

This is typical propaganda language. It could mean anything. A responsible and serious individual would write exactly what they meant, not plant seeds of doubt in the readers' mind.

On a general note, while discussing the topic of harassment, there is something that never seems to be discussed: there is a part of society who - if told that 'researchers' are being treated 'badly' by 'activists' - would ask "what have the researchers done that is so bad to deserve this treatment?" - and not automatically assume this is the case of 'good researchers' vs 'bad activists'.

 

[Esther12]

Personally, I think the lack of evidence that QMUL presented at the Tribunal is pretty compelling. The PACE team spent a lot of time and money over the years trying to prevent the trial data being released. If they had any convincing evidence to back up their argument that releasing the data would embolden 'dangerous activists', there's no good reason why they wouldn't have presented it. Instead they submitted a bunch of unsourced newpaper articles - which amounted to hearsay - and paid Professor Anderson to make speculative comments about 'borderline sociopaths'. If they could have easily proved their concerns had substance (by presenting evidence of death threats, police involvement, etc) they definitely would have done so. The fact that they didn't is pretty damning - Chalder's comments are just an admission of how much they've exaggerated the nature of the abuse they've received.

I'd agree with 'compelling', and I certainly think it's worth pointing people to its findings, but I think it's worth being a bit cautious with this whole area. Also, the Tribunal was only a relatively short process... it seems like Matthees did a great job informing the judge of what was going on, but we shouldn't take any document as definitive.

Also, I've found that a depressingly high number of UK academics do seem to view outsiders asking tough questions as some form of harassment. As we need to get more academics on-side to make progress I think that it's worth being a it cautious with this whole topic.

I don't know if Anderson was paid by QMUL for his time. That's an interesting point actually.

 

[Hip]

Have we got confirmation from the police that they were involved and requested Wessely to install panic buttons?

You'd have to write to the Guardian journalist in question (Robin McKie) and ask him. Or write the police themselves, and see what they can tell you, if they are allowed to provide details.

I personally believe Wessely and McClure when they say they received email abuse and death threats; but if you think that both of these people may be making it up, or are grossly exaggerating, I guess you will have to try to gather further evidence that will satisfy you.

But let me ask you, why would McClure, who previous to her XMRV study had no connection to ME/CFS as far as I am aware, fabricate this?

Sorry, @Hip, but the articles you quote aren't evidence of anything. Wessely told his mate the police installed those things and had that data, but there was no confirmation from the police and his friend is now too dead to verify it.

See above.

There's no indication in the article that the Guardian got any corroboration for these claims from the police.

True, but the police also read newspapers. Don't you think that if Wessely had completely lied in the newspapers about the police requesting the installation of a panic button, someone from the police would have read the article and written a letter to the newspaper?

Wessely often writes in such an evasive way that it can be difficult to summarise what he thinks, so I think it's probably best to try to rely on direct quotes.

He does write in an evasive way (no doubt because the theories he proposes are nonsense, so it's best to obfuscatve the details). However, here is one of his more clearer quotes:

I will argue that ME is simply a belief, the belief that one has an illness called ME..... .I will argue that this line here [overhead slide] represents not the line between low and high cortisol responses [but] the line between real and unreal illness.

Source here.

 

[Stewart]

Don't you think that if Wessely had completely lied in the newspapers about the police requesting the installation of a panic button, someone from the police would have read the article and written a letter to the newspaper?

I'm absolutely certain that if Wessely *had* completely lied about the panic button, nobody from the police would have taken it up with the newspaper. There were about 140,000 police officers in the UK back in 2011. Any of them that read the Guardian article would have just assumed that Wessely's case was being handled by another unit. Why would anyone take the time to factcheck an article that didn't paint the police negatively, especially at a time when the police were under increased pressure due to reductions in officer numbers?

To be clear though, I'm not trying to suggest that Wessely's claims about the panic button were a complete fabrication. As @Esther12 said above, I don't think we can read much into the fact that a button was installed and we probably shouldn't take Wessely's account at face value. It might well be that the police recommended a panic button because they genuinely believed his life was at risk - or it could equally be that Wessely and his employers at King's College made a great fuss about the abuse he was receiving, and the police suggested a panic button as a means of mollifying him even though they didn't think he was at any real risk. We just don't know the exact circumstances in which it was fitted.