'Harassment' of researchers...

[cfsStevew]

Im curious about two points in this saga

1. Have any researchers apart from Wessely school reported being subjected to harassment?

2. What was the true extent of the harassment?

 

[Esther12]

1. Yes.
2. No-one knows. They've been shown to have exaggerated a few things previously though.

 

[cfsStevew]

thanks - which other researchers?

 

[Esther12]

Crawley posted her phone number on youtube and asked for patients concerned about her Lightning Process trial to speak to her, then complained on the radio that she got so many angry phone calls she had to get her number disconnected (she did not mention posting her number or asking people to ring) - she mentioned some other stuff that sounded very weak. White is always talking about the harassment of FOIs. McClure had someone send her a weird and nasty e-mail during the XMRV thing.

Also, there are things like @pam_das on twitter:

https://twitter.com/pam_das/status/573053011045580800

I'd have thought that there are loads of things like that. Oh - Max Pemberton was another good one. He claimed PACE showed 30% of people recovered with CBT/GET [later edited to 30% improved or recovered, or something like that], and that the main problem with CFS was trying to get people over-come their fear of the stigma of mental health care in order to engage with these highly effective treatments - when patients were angry about this he ran a column about how he had to go to the police for support and protection because people had googled his name with malice. He never acknowledge that his claims were just BS.

 

[Valentijn]

The equating of FOIA requests and letters published in journals with "harassment" says it all, really. There's been little or nothing that qualifies as harassment, and patients who are upset about statements or politely disagree with the conclusions and statements by researchers are accused of being bigoted anti-psychiatry extremists.

Maybe we should start suing for defamation of character

 

[Esther12]

I'm sure that there's been angry stuff... there are lots of good reasons for being angry about what some of these people have done (although not McClure). I think that a lot of the complaints of a campaign of harassment stem from rubbish people in positions of power thinking that they deserve respect and gratitude from those they have mistreated.

 

[charles shepherd]

The simple answer to your questions is that there are a number of UK researchers who report that they have been subjected to some form harassment or personal abuse by people who have ME/CFS, or say they have ME/CFS.

It's worth noting, as I keep pointing out to my research colleagues, that they are not alone because I have been at the sharp end of completely unacceptable behaviour that has involved false accusations, defamation and the sending of falsified evidence. As a result I have had to go to my lawyers and to the police on two occasions over the past few years. This is a costly, depressing and time consuming process.

One person now has a restraining order imposed on them by the courts following harassment/abuse of one of my charity colleagues. I am also aware of completely unacceptable behaviour towards one of our parliamentary representatives.

I'm afraid there is a problem here that cannot be ignored in that there is very small number of people who have ME/CFS, or claim they have ME/CFS - but do in fact have a mental health problem - who have behaved/still behave in a completely unacceptable manner towards researchers/clinicians/charity representatives they do not agree with or do not like. Sadly, this is one of the reasons why some of my good medical and research colleagues refuse, or are very reluctant, to get involved with the illness.

Can I ask why you are posing this question?

 

[SOC]

I'm afraid there is a problem here that cannot be ignored in that there is very small number of people who have ME/CFS, or claim they have ME/CFS - but do in fact have a mental health problem - who have behaved/still behave in a completely unacceptable manner towards researchers/clinicians/charity representatives they do not agree with or do not like.

Since this problem appears to be unique to (or at least occurring vastly more often in) the UK, I wonder if it has something to do with the Oxford definition which diagnoses mentally ill people with "CFS" and then treats them with the disrespect CFS patients are always subjected to. In other words, the BPS school may have created the monster that it's now oh-so-terrified of.

I still think some of those so-called researchers are completely over-reacting when they call legitimate questions and FOIA requests "harassment." I doubt they're subjected to as much genuine harassment as they claim. However, if Charles says he and the charities are subjected to genuine harassment, it's hard to argue that there isn't a serious problem over there.

@charles shepherd, do you have any sense whether this harassment, or at least that which you are intimately aware of, is the work of one or two people only, or is it the work of a larger group? One or two sickos is statistically "normal" and probably just needs to be handled in the usual way we deal with the occasional nasty person. If this is a concerted effort by a large group of people, we as a patient population may need to deal with it as it is damaging our reputation.

 

[geraldt52]

Have you ever watched kids on a playground, and seen what happens when a new kid shows up and bullies the resident "bully". He goes crying to the teacher...

 

[charles shepherd]

Since this problem appears to be unique to (or at least occurring vastly more often in) the UK, I wonder if it has something to do with the Oxford definition which diagnoses mentally ill people with "CFS" and then treats them with the disrespect CFS patients are always subjected to. In other words, the BPS school may have created the monster that it's now oh-so-terrified of.

I still think some of those so-called researchers are completely over-reacting when they call legitimate questions, and FOIA requests "harassment." I doubt they're subjected to as much genuine harassment as they claim. However, if Charles says he and the charities are subjected to genuine harassment, it's hard to argue that there isn't a serious problem over there.

@charles shepherd, do you have any sense whether this harassment, or at least that which you are intimately aware of, is the work of one or two people only, or is it the work of a larger group? One or two sickos is statistically "normal" and probably just needs to be handled in the usual way we deal with the occasional nasty person. If this is a concerted effort by a large group of people, we as a patient population may need to deal with it as it is damaging our reputation.

I don't think this sort of activity has anything to do with the Oxford criteria.

And I think you have to distinguish between things which may irritate or annoy researchers (e.g. FOI requests) and behaviour that is abusive, threatening, libellous or just unacceptable.

As I've repeatedly said when the media picks this up here in the UK, the numbers of people who do this are minute; some of them have a mental health problem; and some of them do not even have ME/CFS.

One of the people who used to write very abusive emails to me, which contained the repeated use of the F... word, and was very active on the internet at the time, said he had ME, but from previous personal contact with him I didn't think this was likely.

 

[redviper]

These people are monsters who have made a living off exploiting the misery of suffering people all across the world for profit and to enhance their own professional reputation, they are 100% responsible for whatever response they are receiving. And honestly, considering the fact these people have contributed to the suffering and death of ME patients all across the world, I'd say they are lucky to have only have received nasty e-mails thus far.

 

[Gijs]

Did Wessely go to the police? I never have seen any prove of harassment, did you? I don't like this kind of thing but i can imagine that very sick people are very angry if you life is over and a living hell and no doctor do anything. Especially if children are involved and taken out of there houses. If it was my child i think it could be ugly for the doc, sorry. You don't have to take everything in live the doctor is not God, or is he?

 

[redviper]

Let's just say those advocating against Wessely and the UK researchers from his school of thought are heroes and deserve our respect for strongly defending the rights of ME patients, one of the most marginalized groups of patients in the Western world.

 

[cfsStevew]

Can I ask why you are posing this question?

thanks for your answer. yes sure - Im asking in order to hear what the story is from anyone in the patient community who knows about it. I am concerned to be honest of the patient community being silenced or controlled by claims of harassment against researchers when they are trying to defend themselves, for example from useless treatments and bogus ideology from people like Wessely.

And I think you have to distinguish between things which may irritate or annoy researchers (e.g. FOI requests) and behaviour that is abusive, threatening, libellous or just unacceptabl

yes - but FOI requests is commonly quoted as a harassment eg in the CFS/ME Research collaborative discussions - which I appreciate you attempted to be taken off the agenda!

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0

 

[alex3619]

The equating of FOIA requests and letters published in journals with "harassment" says it all, really. There's been little or nothing that qualifies as harassment, and patients who are upset about statements or politely disagree with the conclusions and statements by researchers are accused of being bigoted anti-psychiatry extremists.

Maybe we should start suing for defamation of character

Maybe we should start arguing that these researchers are vilifying patients who complain their research is just not good enough? This is a common ploy, usually used in politics. In other words, its not science, its political manipulation of the dialogue on this issue.

They will not release data under FOI that is necessary to understand the PACE trial, and they wont release evidence of real harassment. I have no reason to suspect there might not be some, but that is to be expected when people use social media and public presentations (e.g. interviews) to present their claims. In my own case alone I can cite numerous examples of medical harassment. At best this is the pot calling the kettle black.

These therapies dive into current UK politics, though at the fringes. To expect no public response is ludicrous. This applies to anyone operating in the biopsychosocial framework. Personally I think BPS is in danger of becoming the new Eugenics movement. Weak science in combination with powerful political forces can get out of hand.

 

[redviper]

I am concerned to be honest of the patient community being silenced or controlled by claims of harassment against researchers when they are trying to defend themselves

I wouldn't worry about that brother, our community is getting stronger and more bold every day, and will continue to only be further emboldened by all the positive research that is coming out.

 

[alex3619]

On social media there are times when very negative behaviour may have nothing to do with harassment over CFS. Its trollish behaviour. There is some question as to whether they all have ME or CFS or whatever.

There is some very narrow thinking in parts of the CFS world by a very few people. People are indeed subjected to accusations etc. that are totally or mostly unfounded. We have all seen it. This is not the same issue. This is not just about charities, doctors and researchers, but about patients too. Harassment in my view is when things go beyond that. Where does bad behaviour end and harassment start? I think this is not always clear cut.

I have been accused of being Gerwyn Morris in disguise (despite being in a different part of the world), twice, a shill for Simon Wessely, a princess, and other things. So I know that bad behaviour goes on, and that it can be totally unfounded. Mostly this is bad argument style, in which if you disagree with someone they bring out the ad hominem attacks.

I wonder if first we need to understand what exactly is meant by harassment.

 

[alex3619]

I am concerned to be honest of the patient community being silenced or controlled by claims of harassment against researchers when they are trying to defend themselves, for example from useless treatments and bogus ideology from people like Wessely.

That is part of the intent, I am sure. The other part is that this protects them from others listening to any claims they have done anything inappropriate. Its insurance.

The bad news for them is that we are not going away until there is a cure, and even with a cure it will give us the ammunition to directly attack their claims and record of behaviour.

This research program is in decline as it does not explain the growing biomedical evidence.

 

[Bob]

I can easily imagine that some researchers have received repeated abusive or harassing correspondence. I have no reason to doubt Charles Shepherd, and every reason to believe him. As well as Charles, other researchers (including e.g. Judy Mikovits) have also reported being at the receiving end of abusive correspondence.

We've all come across behaviour that is unpleasant when using the forums. So I don't doubt that people are at the receiving end of abuse. And it's not pleasant to be harassed. I can't even tolerate moderately inconsiderate behaviour.

We know that some researchers are at the receiving end of harassment, and I don't think it helps us in any way to pretend that it doesn't happen.

I can easily imagine some decent patients going a little too far and sending correspondence that can be interpreted as threatening. One such case was highlighted in the media coverage of Wessely and colleagues - the police spoke to a genuine but clearly frustrated and angry patient who had sent correspondence to a researcher. They hadn't realised that their correspondence has crossed a line, and could be considered harassment - no further action was taken in that particular case.

And I'm sure there are occasional and isolated more extreme cases of harassment. A journalist has said that he's seen examples of the stuff sent to Wessely and he has no doubt that Wessely receives at least some isolated incidents of abuse.

The reason why the patient community is uncomfortable with this issue, is that certain professionals inappropriately use isolated examples of abuse in an attempt to portray an entire patient community as being militant extremists involved in a campaign of hostility. They use the situation to tar an entire patient population with the same brush, in an abusive propaganda war that serves their personal interests and promotes their own agendas.

Abusive correspondence is not limited to the world of ME. There's been a lot about this in the UK's media - many celebrities are at the receiving end of a torrent of abuse on social media. Especially women, it seems. Some really nasty stuff.

I think we should be careful not to conflate issues when we discuss this. There's a difference between (1) making justified and legitimate complaints of isolated incidents of harassment, as Charles has done, and (2) using isolated incidents of harassment as a means to pursue a self-serving agenda that portrays an entire patient population as militant extremists hell bent on destroying the reputation of all decent and honest researchers in an orchestrated campaign of harassment. Portraying legitimate FOI requests, and legitimate scientific critiques, as supposed evidence to support the alleged campaign of harassment, further muddies the water.

I think we should acknowledge that the former situation (1) happens whilst also vigorously challenging the self serving agenda of the latter situation (2). I don't think it serves us to deny that there are isolated incidents of abuse coming from people associated with this community or any other community. There is evidence that abuse goes on, so we just look dishonest or ill-informed if we deny it. I don't have a problem accepting that harassment occurs, but I do have a problem accepting that an entire patient population are militant extremists who use FOI requests and legitimate scientific discourse etc. as part of a campaign of harassment.

 

[msf]

Yes, it has been shown not been harassed nearly enough. In fact, they have been subjected to a dangerously low level of harassment, with the result that they have been able to go whole days without noticing that a lot of people think they are charlatans and shills.

If you would like to let Wessely and co know what you really think of them, please call this number: 0800 P-S-Y-C-H-O-B-A-B-B-L-E