Harassment claims in the media and social media.

[freddyV]

This post has been copied and the following discussion moved from this thread: What we're not being told about ME - UnHerd (Tom Chivers)

With reference to ME sufferers turning up and harassing researchers...
Really?
After 35 years of illness, I count it as a win to get up and in to my garden. After a hospital visit for other issues, the rest of the week is lost.
Who are these fit "sufferers" able to travel and kick up a fuss?
People without a cogent argument have consistently played the victim card.
Sadly, the ME community has too many victims, but its the hangers-on pretending that CBT/PACE is the answer, not the patients who make the most noise. The patient is almost always invisible to the wider world.
As for depression, yes we all have rotten moments but the majority of us still hope to be better tomorrow, or the next day. Life with ME and no expectation of freedom is too big a burden to carry every minute, every day.

 

[Invisible Woman]

Copied post

Great article but not terribly happy about the harassment bit either.

If we're going to talk about harassment then talk about it in a balanced way. I daresay there have been ill judged letters or comments over the years but -

1. the newspaper smear campaigns over the decades, often with quotes from "experts" have caused many ME patients into being bullied and harassed by those around them into spending money they don't have on treatments that don't work. Then when left worse off in every way, they have been dismissed and disgarded as worthless individuals who simply don't want to get better.

2. researchers who know full well that their hypothesis is unproven have stood by and allowed their hypothesis to be used by both insurers and benefits agencies alike to deny desperately needed support to vulnerable people. Where support is given it's usually at such physical cost to the claimant that it often causes a deterioration in their condition.

3. having reported abuse to a tribunal (PACE FOI tribunal) and then been questioned further, a researcher admitted that what she called abuse was one incident of minor heckling. If that's the case maybe everyone in my old school debate team should be claiming harassment and abuse.

4. Esther Crawley when alleging she was the victim of abuse waved a cut and paste threatening letter in front of her audience. She even quoted from it while neglecting to mention it was a mock up & not an actual letter sent by anyone.

Personally, I would rather a few angry letters or emails, even the odd threat than being outcast and denied the support I need. If you want to know what feeling threatened and intimidated feels like many ME patients can tell you - it's having the Benefits Agency review forms hit your doormat, knowing your GP thinks you could get better if you tried & won't support your claim, your family won't help you either because you wouldn't/couldn't afford to go on that LP.course they were goung in about and if your money is cut back any further a choice between heating and eating will seem like a luxury.

I'm sorry (to my fellow ME sufferers) if this appears to be an angry rant. I'm not angry - it's almost impossible to maintain fury over a period of decades anyway. I'm not angry, just saying.

 

[Mithriel]

On the harassment point, I think he’s fair to raise it in the way he does - we have to face it that, as a patient group, we have a PR problem. I hesitate to say this next bit but, IMHO, I do sometimes see behaviours that, whilst not necessarily abusive, are not helpful given the reputation we have.

The point is that the idea that we are abusing researchers did not come from attacks on researchers. Consider animal rights protestors, some truly did set fire to buildings and dug up a body to hold hostage. The whole lot were painted the same way but something actually happened.

We face this because of a deliberate decision to use it as a way to deflect reporting from our problems. The email and facebook abuse is a pale shadow of what women MPs put up with every day. If there had been a load of genuine attacks they would be rolled out but they are not. We did nothing to bring this about.

The NIH did not give out the names of the people behind the decisions about ME because of serious fears about harm to them. It turned out that and anonymous reporter made a phone call saying he had overheard some people planning an attack. That was it. The gossip, if that is the right word, round the NIH was we were a violent group and we don't know how much of the neglect and lack of sympathy we have had from them over the years is due to that.

The articles printed about how researchers feel safer in Baghdad and give up research because of the fear never go on to give examples.

We are much politer than similar groups who have had to fight for their rights. Our protests have people in wheelchairs chatting to policemen yet the papers published that Special Branch is tracking about 300 of us because we are particularly dangerous as there are so many of us.

Because of "threats" a 70 year old professor emeritus was not allowed into the main lecture hall where Wessely was giving a talk (after being told it had been cancelled).

It has never been about what patients have done. We get on well with the researchers who respect us. Fluge did not get the result we hoped but he did not get death threats because of it.

 

[Peter T]

Copied post

A great article.

But if the threats to researchers are to be reported, it should also be reported that they have been repeatedly been misreported or been based on hearsay or even in some cases fabrication. I do not doubt there have been intemperate things said, but to assert harassment when the only legal forum this has been addressed only found evidence of a single incidence of heckling in a public forum and no legal action appears to have taken place in relation any of the claimed death threats, is potentially misleading when we also have evidence of at least one GET/CBT advocate deliberately misrepresenting claims and presenting false evidence.

 

[Dx Revision Watch]

Copied post

...I just wish the stuff about researchers being threatened and attacked wouldn't keep coming up in this way without the caveat that what most of them call attacks are criticisms of their research methods. No mention too of the way these same researchers deliberately twisted reporting of the outcomes of trials to appear to get the answers they wanted, or refusing to release data for years and needing to be taken to court. No mention of the immeasurable harm their treatments and gaslighting have done to countless thousands of patients for decades. No, just poor little me researchers get a few emails they don't like and get to spread nasty lies about the whole ME community yet again...

Indeed.

Unless Tom has evidence supporting the allegation: "... and I’ve heard of them turning up to people’s houses or doxxing them." it would be prudent not to have quoted that within the article. It risks being reiterated, unevidenced, in other media reports and blogs.

Wessely, himself, pointed out his own house in a slide at the end of his Gresham College lecture (at which one of his sons and a school group were present in the audience) and said he'd be drinking in the pub in that road, later, after the lecture. What does one make of his broadcasting where he lives and where he goes for a pint?

My understanding is that the "threatening phone call" received by Wessely which led to the lecture being cancelled and then uncancelled, was anonymous. It could have come from anywhere and from any group. There had been several activist groups protesting about the lecture for weeks.

With Michael Hanlon having died, in 2016, he can no longer be called upon to account for what he wrote in that appalling Sunday Times feature (5 May 2013).

Several years ago, I worked with two others on an FOI around various claims made by Hanlon, in that article, concerning the Metropolitan Police. Unfortunately, due to the domestic situation of one of the co-authors of this FOI, our draft wasn't completed and never submitted.

 

[Dx Revision Watch]

...We are much politer than similar groups who have had to fight for their rights. Our protests have people in wheelchairs chatting to policemen yet the papers published that Special Branch is tracking about 300 of us because we are particularly dangerous as there are so many of us...

Did anyone apply through the process for obtaining personal data to see whether their names were on any alleged list?

 

[Wonko]

Did anyone apply through the process for obtaining personal data to see whether their names were on any alleged list?

I seem to remember reading that when the police were asked they denied the existence of any such list.

Of course, they would say that, wouldn't they, can't go around blabbing about the super secret fictional list to just anyone.

Helpfully I have absolutely no idea when or where I read this - but presumably it was an an ME forum, at some point, in the past.

 

[chrisb]

And if we do attend talks, do we need to check our handbag before we leave home in case there is a pintail comb in there which might be perceived as being a potential weapon - FFS.

You wouldn't want to have a small knife in your lunchbox for cutting your apple, that's for sure.

 

[Dx Revision Watch]

You wouldn't want to have a small knife in your lunchbox for cutting your apple, that's for sure.

And you could probably do a lot of harm with a banana.

 

[Dx Revision Watch]

I seem to remember reading that when the police were asked they denied the existence of any such list.

Of course, they would say that, wouldn't they, can't go around blabbing about the super secret fictional list to just anyone.

Helpfully I have absolutely no idea when or where I read this - but presumably it was an an ME forum, at some point, in the past.

I think Hanlon wrote, in the article, that he could not get hold of a copy of this list, but then later he was shown a copy and the "same names kept coming up" or words to that effect. But he fudged who had shown him this alleged list, ie he did not clarify whether it was a copy of an official list held by the Met (and if so, would that not have been a data breach?) or was this a list being maintained by a researcher or clinician? As for implying that there is a special unit in the Met just for monitoring ME activists - well, did he really expect readers to believe that?

I've got a copy of the article on file. I'll dig it out.

 

[JohnTheJack]

I did actually start to poke around in this with FOIs. I'll dig them out in next couple of days.

 

[Stewart]

I seem to remember reading that when the police were asked they denied the existence of any such list.

Of course, they would say that, wouldn't they, can't go around blabbing about the super secret fictional list to just anyone.

Helpfully I have absolutely no idea when or where I read this - but presumably it was an an ME forum, at some point, in the past.

Michael Hanlon's 2013 Sunday Times article alleged the existence of a specialised unit at Scotland Yard monitoring 'ME extremists' - however in the same sentence Hanlon acknowledged that nobody at Scotland Yard had actually corroborated this claim.

He then talked about a list of activists, which he claimed to have seen - but given his earlier comments this was unlikely to have come from the police. The implication seemed to be that Wessely et al had drawn this up and made it available to 'the authorities' but Hanlon was somewhat obtuse (deliberately so?) on this point.

 

[Dx Revision Watch]

"Wessely lists his tormentors, who cannot be named for legal reasons. Convictions, for harassment or threatening behaviour, are difficult to obtain. The person who telephoned him to say, “We will come and get you soon”, did not leave a name or address, nor did the man who said he was going to “come and cut your balls off”.

(...)

"Few people will speak on the record about the extent of the threat to the ME researchers. There is, I am told, a specialised unit at the Metropolitan Police dedicated to monitoring the threat, but no one at Scotland Yard will speak publicly about this. Publicity, it seems is to be avoided at all costs, and the less said about this bizarre war, I am told, the better.

"I understand that a list is often drawn up in these circumstances — to protect those who might be under threat from potentially dangerous activists of any hue, not just those who are objecting to scientists undertaking research into ME. Some argue that circulating lists of activists — who in many cases might be mentally ill — has implications for civil liberties.

"But given the nature and scale of the threat, it is unsurprising that a set of the most worrying names exists — and it is at the disposal of the authorities. After much persuasion, I am shown a list of activists; names that crop up time and again on the ME forums. They are divided into three categories: militant, radical and active. Most are prolific posters on the various ME forums and Facebook pages (interestingly, Twitter seems largely immune).

"In Britain the number of real extremists probably amounts to about 50-80 people (compared with the 25 or so hard-core animal-rights extremists identified by the authorities), yet they wield influence out of all proportion to their numbers..."

 

[Dx Revision Watch]

The term I was struggling to recall is "domestic extremist".

Guardian article from 2011:

Are you a 'domestic extremist'? How to ask if you are on police databases

Rob Evans and Paul Lewis explain how the Data Protection Act can open up police files. Plus a step-by-step guide to making your own request

http://www.theguardian.com/uk/2011/apr/11/domestic-extremist-police-databases

"All that is needed to find out what information is being held about you in police intelligence files is to follow our step-by-step guide and send this simple letter. This is through a relatively powerful piece of legislation, the Data Protection Act.

Any member of the public can submit a request under this act asking for copies of the entries stored about themselves on the police's databases of political activists. The act gives the public the right to see personal data held on them by police forces, and any other state organisation such as local councils, schools and Whitehall departments." etc

Edited to add: I'm told that the links in this article no longer point to the guide and template letter.

 

[chrisb]

That was absurd journalism. He implied that a list was in existence, but merely said "I understand that a list is often drawn up in these circumstances". That really is disreputable. As is the newspaper which published it.

 

[Sean]

And you could probably do a lot of harm with a banana.

Especially a green one.

 

[Sean]

Wessely, himself, pointed out his own house in a slide at the end of his Gresham College lecture (at which one of his sons and a school group were present in the audience) and said he'd be drinking in the pub in that road, later, after the lecture. What does one make of his broadcasting where he lives and where he goes for a pint?

I think Wessely is vulnerable on this incident. His behaviour really does not seem that of a man genuinely in fear of his safety, let alone that of his then early teenage (?) son and his schoolmates.

One of the more obviously fraudulent of the harassment and threats claims, I suspect.

My understanding is that the "threatening phone call" received by Wessely which led to the lecture being cancelled and then uncancelled, was anonymous. It could have come from anywhere and from any group. There had been several activist groups protesting about the lecture for weeks.

Yes, very convenient to not verify the provenance of the phone call.

 

[Mithriel]

That was absurd journalism. He implied that a list was in existence, but merely said "I understand that a list is often drawn up in these circumstances". That really is disreputable. As is the newspaper which published it.

I am pretty sure this was the journalist who interviewed Malcolm Hooper and gave him the chance to explained his objections to the PACE trial and what was being done to ME patients.

He heard no more about it until this article was published. If it was not this one it was another one and it showed that it was not a naïve journalist who simply believed the "experts" but one who had heard the full story but printed the aspect that was most sensational without any thought for the truth or the harm it would cause.

 

[Invisible Woman]

Why should individuals not attend talks?

Did we not have a case when someone.....Coyne?.... was giving a talk and some guy showed up and hogged the floor, throwing in lots of questions about something complete different?

I remember someone who was there posting about it IIRC when asked by another attendee to stop because this was an important event for the ME community he just shrugged and carried on.

So, it seems like some people show up at random talks and can be a little disruptive as a protest about something that has nothing to do with the subject of the talk. It may be a shame but I suspect this happens at all sorts of public talks and speakers /organisers have to cope with it. Unless you're one of those delicate hot house ME researchers apparently & then it's something more sinister.

Edit - typos and some stray text that snuck in there

 

[Londinium]

The point is that the idea that we are abusing researchers did not come from attacks on researchers. Consider animal rights protestors, some truly did set fire to buildings and dug up a body to hold hostage. The whole lot were painted the same way but something actually happened.

We face this because of a deliberate decision to use it as a way to deflect reporting from our problems. The email and facebook abuse is a pale shadow of what women MPs put up with every day. If there had been a load of genuine attacks they would be rolled out but they are not. We did nothing to bring this about.

The NIH did not give out the names of the people behind the decisions about ME because of serious fears about harm to them. It turned out that and anonymous reporter made a phone call saying he had overheard some people planning an attack. That was it. The gossip, if that is the right word, round the NIH was we were a violent group and we don't know how much of the neglect and lack of sympathy we have had from them over the years is due to that.

The articles printed about how researchers feel safer in Baghdad and give up research because of the fear never go on to give examples.

We are much politer than similar groups who have had to fight for their rights. Our protests have people in wheelchairs chatting to policemen yet the papers published that Special Branch is tracking about 300 of us because we are particularly dangerous as there are so many of us.

Because of "threats" a 70 year old professor emeritus was not allowed into the main lecture hall where Wessely was giving a talk (after being told it had been cancelled).

It has never been about what patients have done. We get on well with the researchers who respect us. Fluge did not get the result we hoped but he did not get death threats because of it.

I’ll try and expand on my original post in due course as a short walk yesterday means I feel like I’m being trepanned today. However, to be clear, my point wasn’t that the bulk of patients are actually regularly abusive. More that some features of this community can be counterproductive (/not PR savvy).