'Harassment' of researchers...

[charles shepherd]

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?

My understanding is that Professor Wessely did report this to the police.

 

[cfsStevew]

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 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.

great post thanks bob - basically explains my concerns more eloquently than I could...

 

[charles shepherd]

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 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.

Bob - This is a very fair and balanced summary of the current situation.

I would not disagree with anything you have said!

One point I will add is that having got the media and medical journals interested in this aspect of ME/CFS, those at the receiving end are now very reluctant to let it go.

For example, at the Royal Society of Medicine meeting on ME/CFS that I helped to organise and take part in two weeks ago, the psychiatrist from KCH referred to harassment of researchers, and the XMRV harassment in particular, during his presentation.

And this really makes life difficult for those of us who interact with ordinary doctors and are trying to convince them that ME/CFS is not a mental health problem.

 

[Bob]

And this really makes life difficult for those of us who interact with ordinary doctors and are trying to convince them that ME/CFS is not a mental health problem.

This is an unfortunate state of affairs, and it ties in with the general ignorance surrounding ME/CFS. There's no excuse for such ignorance coming from medical professionals, but we all know that there are ignorant medical professionals out there. Perhaps you could shove the IOM report at them the next time you're trying to convince someone about the nature of ME/CFS?

 

[Snowdrop]

It would be interesting if we could find the PWME who have legitimately crossed the line at some point (no doubt in frustrated response to BPS abuse) and ask them if they'd be willing to publicly apologise.

 

[cfsStevew]

And this really makes life difficult for those of us who interact with ordinary doctors and are trying to convince them that ME/CFS is not a mental health problem.

But isnt it time that current ME researchers, scientists and psychiatrists spoke out against the Wessely school directly instead of the appeasement? For example the PACE trial - how could a whole community of scientists allow that to remain with the status it has?

I absolutely do not condone the nasty cases of real harassment - but it seems to me the real narrative of what ME patients have been through has not properly been explained which allows this false perception to remain. Its as if only half the story has been told, often by institutions like the 'science' media center which in one press release has a far greater reach than any patient or charity - and the patient community is paying for it.

The idea that the patient community is an aggressor is ludicrous when people are being sectioned under mental health acts and are lying in darkened rooms having been neglected for decades...the narrative of harassment started and maintained appears just another layer of abuse against patients by those in position of power. Intentional or not - that seems like the result.

 

[duncan]

cfsStevew: "...the narrative of harassment appears just another layer of abuse."

This is spot on. Most sufferers of ME/CFS, and most advocates for them, would have no quarrel with this observation.

 

[geraldt52]

It would be interesting if we could find the PWME who have legitimately crossed the line at some point (no doubt in frustrated response to BPS abuse) and ask them if they'd be willing to publicly apologise.

Probably about the same time Wessely and his cronies will be willing to apologize for what they've done.

Someone would have to go a long way to convince me that Wessely and his cronies don't actually enjoy provoking the sort of responses they get, or claim to get. They know full well that it is an asymmetric battle, with them in a privileged authority position, and they use their position to goad people that they know are vulnerable. It is the most despicable behavior I can imagine...far more despicable than the flimsy "harassment" they claim they are so offended by.

 

[duncan]

This same sort of thing was alleged in the Lyme wars in the United States. It is rumored that one of the old guard felt that he was so, um, misunderstood, he felt compelled to hire a PR firm to help right his image.

I doubt it mattered much.

 

[Sean]

I have no doubt there has been the isolated case of serious harassment and even threats from ME/CFS patients (or people claiming to be patients), and they should be exposed and held to account.

But in the context of the grotesque systemic decades-long mistreatment of literally millions of sick, vulnerable, innocent patients by the authorities (and their media lackeys), what is really remarkable is that there has been so little serious harassment and payback from us patients, that we have been so patient and restrained in the face of this flood of ruthless provocation and abuse.

What, unfortunately, is not remarkable (i.e. not unusual) is that there has been so little accountability required of those who have shamelessly exaggerated and exploited this situation for their own nefarious arse-covering ends, and at extremely serious cost to patients. The people making these harassment claims know full well the likely consequences, and still choose to further endanger us rather than face the truth about themselves and their behaviour.

They have no excuses for this filth. None.

That is the real story, if our world has the basic courage and decency to face it.

 

[Esther12]

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.

I don't think you're being fair to them there Bob. From what I remember, they are always keen to be clear that the vast majority of patients are very happy with the way they are treated, and it is only a small minority who are so confused, stupid or unreasonable as to think the Wessely & co. have done anything wrong.

 

[WillowJ]

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.

I find this a bit difficult to understand.

1) ME is certainly not unique in coming from a position of having been trampled. Other diseases have had to take noisy, messy steps and go outside of the normal scientific process in order to get recognition (for instance, AIDS demonstrations, autism advocacy, and it's rumored it took an Act of Congress to get MS treated on a scientific, rather than psychobabbling, basis).

2) It seems to be not unusual [though this is certainly a reprehensible situation], for there to be a (generally small) number of genuinely harassing or even threatening messages for anyone who has any sort of notoriety (though certain groups will get more and Bob mentioned one such group) ... although maybe scientists not working with lab animals or other controversial topics have been largely isolated from this... but it hasn't stopped people from working with other controversial topics, when they felt it was important.

So really what it comes down to in the end, is do they think ME (by whatever name) is important?

We can't change that there are people in the world who sometimes act badly, although we can strive to be decent ourselves. EDIT: just want to be clear that my intent is not to normalize or condone bullying, harassment, or threats--the situation exists but it is not right and we can and should attempt a change. /edit

What we can change is whether people think this disease is important.

 

[Esther12]

This post based on a misquote above.

One point I will add is that having got the media and medical journals interested in this aspect of ME/CFS, those at the receiving end are now very reluctant to let it go.

I find this very difficult to understand.

I took it to mean that they saw the political value of it and wanted to make the most out of it as a way of distracting from legitimate patient complaints.

Maybe I misinterpreted though.

 

[WillowJ]

I took it to me that the saw the political value of it and wanted to make the most out of it as a way of distracting from legitimate patient complaints.

Maybe I misinterpreted though.

I guess I quoted the wrong bit. Meant to respond to this idea:

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.

I'll edit the other post

 

[Hip]

Perhaps one the reasons that some ME/CFS patient activists have resorted to making threats of violence against these Wessely School researchers (or anyone else who believes ME/CFS is "all in the mind") is due to the position of powerlessness that many ME/CFS patients find themselves in, as a result of their disease.

It is instructive to read the amusing history of the HIV activist group ACT UP, who fought so hard in getting a proper research program into AIDS instigated. These guys were certainly not powerless!

These people often got arrested, and got up to all sorts of things, like invading a television studio broadcasting the news and shouting "AIDS is news; fight AIDS, not Arabs!" (this was during the Gulf War); and interrupting a Catholic Mass, chanting slogans and laying down in the aisles. They also organized a "shut down Cosmo" demonstration outside the offices of Cosmopolitan magazine, after the magazine had published an article by a doctor that contained major errors (saying that HIV could not transmit during heterosexual vaginal sex).

All headline grabbing stuff, which ones assumes played a significant role in instigating the multi-billion research investment that has now made AIDS a treatable disease.


But here is the rub: these AIDS activists were fit and able, and so could get involved in these sort of traditional modes of demonstration and campaigning. However ME/CFS patients do not have such recourse, on account of the severe limitations placed upon them by the disease.

So I guess this might explain why some ME/CFS patients resorted to threats of violence: they may have chosen this avenue for no other reason that this is a feasible thing for an ME/CFS patient to do, whereas the high energy requirements of a demonstration or a march in the streets is just not feasible for many ME/CFS patients.

So what we need to come up with are avenues of action and demonstration that ME/CFS patients are capable of performing, which have also major media impact. The only thing is that I can't think of anything that would fit the bill.

 

[Sean]

Perhaps one the reasons that some ME/CFS patient activists have resorted to making threats of violence against these Wessely School researchers (or anyone else who believes ME/CFS is "all in the mind") is due to the position of powerlessness that many ME/CFS patients find themselves in, as a result of their disease.

And hence desperation, as we watch our lives cruelly wasted by these idiots, frauds, thugs, and cowards.

How much fecking politeness are they owed under such circumstances? Especially when they try to make out they are the ones trying to help us, and what ungrateful illness-loving scum we are for not falling at their feet in adoring doe-eyed gratitude?

Bollocks to that. Long past time they were held to account.

 

[SOC]

And hence desperation, as we watch our lives cruelly wasted by these idiots, frauds, thugs, and cowards.

How much fecking politeness are they owed under such circumstances? Especially when they try to make out they are the ones trying to help us, and what ungrateful illness-loving scum we are for not falling at their feet in adoring doe-eyed gratitude?

Bollocks to that. Long past time they were held to account.

Hear, hear! I'm all for holding them to account.

In reference to harassment (real or imagined) though, my preference is to keep the holding-to-account legal and above-board. That does not mean it needs to be polite (they certainly aren't), or gentle. It should be legal and honest. There's enough ammo in that vein that we shouldn't have to resort to self-defeating lies and physical threats. Threats of legal action, OTOH, are quite legit in my book.

 

[Sean]

In reference to harassment (real or imagined) though, my preference is to keep the holding-to-account legal and above-board. That does not mean it needs to be polite (they certainly aren't), or gentle. It should be legal and honest. There's enough ammo in that vein that we shouldn't have to resort to self-defeating lies and physical threats.

With you all the way there. Keep it legal and ethical, but robust and unrelenting.

 

[Hip]

The question is though, even if the Wessely School had never existed, and the viral / biological view of myalgic encephalomyelitis had remained the dominant view of ME since ME's inception in the 1950s, would the billions necessary to make this disease treatable or curable have been forthcoming?

Certainly we have to continue to fight to ensure ME/CFS is understood to be a real physical disease, and not all in the mind as the Wessely School would have us believe; however, even if we win this fight, which I think we will, is that alone going to be enough to get us a research budget of billions? I have my doubts, which means we will need to think of ways to create the media impact that the AIDS activists were able to achieve.

 

[Bob]

I don't think you're being fair to them there Bob. From what I remember, they are always keen to be clear that the vast majority of patients are very happy with the way they are treated, and it is only a small minority who are so confused, stupid or unreasonable as to think the Wessely & co. have done anything wrong.

Hmm... I've thought about this and perhaps I wasn't strictly 100% accurate, but I don't think I was being unfair... Although they do indeed often say that most patients are happy with the way they are treated, their words still have a negative effect on the entire patient community. Even if they don't specifically say that the entire patient population is involved in a campaign of harassment, their propaganda allows the media and medical professions to lazily dismiss the entire patient population as being somehow unbalanced and not worthy of respect.

The clear and unambiguous message is always that ME/CFS is a dangerous field to be involved in because of the alleged threats and abuse - more dangerous than working in Afghanistan. There is little nuance. There's no attempt to say that it's a few isolated incidents. And when legitimate FOI requests and scientific discourse (such as respectful academic letters published in the Lancet) are included in these allegations of a campaign of harassment, then there is clearly an attempt to silence all dissenting voices.

So I would say that they do (directly or indirectly) effectively tar the entire patient community with the same brush, especially if anyone in the community dares to speak out about the treatment they receive. And it's not just patients who they direct their comments at - ordinary and decent patient support organisations are targeted as well - perhaps not labelled as extremists but they are often denigrated or labelled as resistant to science etc. Anyone who dares to speak out against the current medical climate can be targeted, and then ignored and dismissed.