Creepy posts by James Coyne to Jeanette Burmeister

[Nielk]

James Coyne is a quandary for ME patients. On the one hand he has helped to expose the scandal that is PACE and his continued advocacy has value. However, he does seem to be an egotist who on occasion behaves appallingly. I've received his DMs before, instructing me as to what I should and shouldn't be saying and doing and didn't appreciate his intervention. He's a mixed bag, although i do feel that the positives of his involvement just about outweigh the negatives. Just.

However, on the other side we have the supposedly defamed and abused advocates. Someone lists a few of them above. Now, I've never had personal contact with Jeanette and thus I can't comment on her advocacy, but I have had contact with two others named earlier in this thread and it wasn't a positive experience. Frankly, between them they could take offence in an empty room and revel in the attention that public victimhood brings. Personally I believe that spats like this should be between those directly involved and the rest of us should butt out. If one of those on both sides of this disagreement enter our sphere of existence, as Coyne and the two advocates did with me, then that is between me and them and it helps no one if I then cry 'victim ' and post on a forum trying to drum up support for my cause and sympathy for my predicament.

I also believe that someone in this thread is posting from two accounts, which is frankly weird.

PR, whilst not immune from conflict, has always been a place I come to be informed and read some sensible debates on a wide variety of aspects of ME/CFS. Stuff rarely gets personal or vindictive and the forum tends to be free from the hot air, conspiracy theorist tub thumpers on other forms of social media. I see no benefit to this thread other than to turn people against each other. It's not the place for it. I made that mistake a few months back, was rightly bollocked for it, regretted it and realised that this is not the arena to vent about personal conflicts.

This place is about informing, aiding and educating. I also think that there is no good or evil in this debate. Both sides have acted questionably on occasion. Turning this into a war can only damage our community.

Edit: I'm also not sure what the OP would have us do about Coyne? Attack him in the way he is being accused of attacking others? Aren't we then as bad as him?

You are basing you judgement on you own personal experience with Coyne and a couple of advocates who were victimized by Coyne. You say because you had problems with each one - therefore they are all equally guilty.

Coyne singled out his victims not because they did anything wrong to him. Coyne picked them because he didn't like one tweet that wasn't directed to him. It was directed to Collins at HHS.

Because of that one tweet he went on a week long rampage using vile language. He terrorized the entire patient community. He threatened us - if we didn't all apologize to him because of one tweet an advocate sent to Collins, he will stop championing for us.

He is a psychologist, so he knew very well the controlling tactics he was using.

Coyne's victims did NOTHING to instigate Coyne's hatred and mad ranting.

So - what I hear some onhere saying is that because they don't like the advocates who were victimized or don't like the advocacy tactics of these advocates, they deserved this aggression, abuse and ostrecizing.

 

[actup]

@richio76, this is the only large international me/cfs forum in the world so where else can we go to discuss complex topics with many conflicting opinions. Real discussion sometimes involves a little acrimony. I do avoid threads like this when very sick though as I also need the comfort zone provided by PR.

 

[lansbergen]

It happens over and over again the moral crusaders dictating what others must do,

 

[richio76]

You are basing you judgement on you own personal experience with Coyne and a couple of advocates who were victimized by Coyne. You say because you had problems with each one - therefore they are all equally guilty.

Coyne singled out his victims not because they did anything wrong to him. Coyne picked them because he didn't like one tweet that wasn't directed to him. It was directed to Collins at HHS.

Because of that one tweet he went on a week long rampage using vile language. He terrorized the entire patient community. He threatened us - if we didn't all apologize to him because of one tweet an advocate sent to Collins, he will stop championing for us.

He is a psychologist, so he knew very well the controlling tactics he was using.

Coyne's victims did NOTHING to instigate Coyne's hatred and mad ranting.

So - what I hear some onhere saying is that because they don't like the advocates who were victimized or don't like the advocacy tactics of these advocates, they deserved this aggression, abuse and ostrecizing.

Nielk, I agree that some of Coyne's behaviour has been appalling. Indefensible. So please don't think that I'm defending his character. I don't like the man and I think that some of his crusades have been misguided and petulant. I condone none of it. My point was that neither side is perfect and that I don't know exactly what the OP and others would have us do about the situation. I think that using words like 'terrorised' is overly emotive. The patient community were terrified of him withdrawing support for our cause but because of that we should now attack him into withdrawing support for our cause? So we should cause the thing that we're supposedly terrified of happening?

 

[richio76]

@richio76, this is the only large international me/cfs forum in the world so where else can we go to discuss complex topics with many conflicting opinions. Real discussion sometimes involves a little acrimony. I do avoid threads like this when very sick though as I also need the comfort zone provided by PR.

It's a fair point. Does that extend to pleas to take sides against individuals?

 

[richio76]

You are basing you judgement on you own personal experience with Coyne and a couple of advocates who were victimized by Coyne. You say because you had problems with each one - therefore they are all equally guilty.

Coyne singled out his victims not because they did anything wrong to him. Coyne picked them because he didn't like one tweet that wasn't directed to him. It was directed to Collins at HHS.

Because of that one tweet he went on a week long rampage using vile language. He terrorized the entire patient community. He threatened us - if we didn't all apologize to him because of one tweet an advocate sent to Collins, he will stop championing for us.

He is a psychologist, so he knew very well the controlling tactics he was using.

Coyne's victims did NOTHING to instigate Coyne's hatred and mad ranting.

So - what I hear some onhere saying is that because they don't like the advocates who were victimized or don't like the advocacy tactics of these advocates, they deserved this aggression, abuse and ostrecizing.

And by the way, I did not say that they are equally guilty. That's a straw man. In fact I offered no criticism of Jeannette B at all, because I've never interacted with her and only read about her work in passing. She's a
lawyer like me, and gains my respect for that. And I also did not say that anyone deserved any sort of disrespect, on either side. Quite the opposite. You keep talking about the situation and yet offer no solution. What would you have us do to avenge this 'victimisation'?

 

[Nielk]

Nielk, I agree that some of Coyne's behaviour has been appalling. Indefensible. So please don't think that I'm defending his character. I don't like the man and I think that some of his crusades have been misguided and petulant. I condone none of it. My point was that neither side is perfect and that I don't know exactly what the OP and others would have us do about the situation. I think that using words like 'terrorised' is overly emotive. The patient community were terrified of him withdrawing support for our cause but because of that we should now attack him into withdrawing support for our cause? So we should cause the thing that we're supposedly terrified of happening?

I used the word terrorize because of the way he threatened all ME patients on Facebook patient groups. When a "healthy" academic uses foul language and threats of withdrawing (perceived crucial) help from a group of very sick desperate patients.

 

[richio76]

I used the word terrorize because of the way he threatened all ME patients on Facebook patient groups. When a "healthy" academic uses foul language and threats of withdrawing (perceived crucial) help from a group of very sick desperate patients.

Ok, but again, what do you want us and the wider patient community to do?

 

[lansbergen]

The patient community were terrified of him withdrawing support for our cause

I was not.

 

[Nielk]

Ok, but again, what do you want us and the wider patient community to do?

Good question. I have been accused here on this thread that I am telling/dictating people what to do - so I hesitate. But, in an ideal world, this is what I would want to see.

It is the basic steps that are advised in any abusive situation.

- acknowledgement that what Coyne did to advocates and all of the community is wrong.

- show support to those who were most victimized.

- ostracize Coyne from our community.

I know that many will jump on me for the last statement but since you asked what I wanted - there it is.

I have stated before that I can't make anyone do anything. Everyone is free to think and do what they like.

 

[worldbackwards]

- acknowledgement that what Coyne did to advocates and all of the community is wrong.

Everyone's done that.

- show support to those who were most victimized.

That will be hard when some people don't particularly agree with their positions, which seems to be part of the deal here.

ostracize Coyne from our community.

If you keep abusing him, he'll keep abusing you back, perpetuating the problem.

 

[TiredSam]

I was not.

Even if many of us were terrified of him withdrawing his support, we aren't now, because there is more hope from other quarters and more people outside the ME community are taking notice and speaking up now. When Coyne first came along the landscape was very different so many more hopes were pinned on him as champion and saviour.

Coyne will do what he wants whether he's ostracized or not, he's a law unto himself. For a time his agenda and the interests of the ME community coincided, but it wasn't a perfect fit and then it all got rather messy.

 

[Nielk]

That will be hard when some people don't particularly agree with their positions, which seems to be part of the deal here.

There are many different opinions and style of advocacy in this community. I would think that this is true of most patient communities - especially those who have been neglected and mistreated. AIDS/HIV Act Up is a prime example. There were those that were opposing the government from the "outside" with demonstrations and other actions. Others worked from the "inside" trying to negotiate with government agencies. They were all important tactics in achieving actionable change within HHS.

It is okay to disagree with tactics, form, and style. But, does that mean that we don't care about them? Does that mean that if they health is adversely affected because they were victims of abuse,we shouldn't care? Saying I'm sorry this happened to you - does not mean I agree with you.

 

[Stewart]

I used the word terrorize because of the way he threatened all ME patients on Facebook patient groups. When a "healthy" academic uses foul language and threats of withdrawing (perceived crucial) help from a group of very sick desperate patients.

Are you saying that Coyne wasn't allowed to tell patient groups that he was considering withdrawing his support because he was frustrated by the behaviour of some other advocates? And that in choosing to do so he was deliberately and actively 'terrorizing' them?

Surely he's allowed to express his frustration, and to tell people that he feels like throwing in the towel. In my opinion, that wasn't the problem - the problem was that he vented his frustration on a group of people who had little to do with the issues that were frustrating him and consequently weren't in much of a position to respond, and when they tried to talk to him rationally about the situation he was aggressive and abusive in reply. Some people may have been terrified that he would leave ME advocacy but I don't think it's reasonable for you to extrapolate that he consequently 'terrorized' and 'threatened' *all* ME patients.

If you want to condemn him, condemn him for what he actually did, which was bad enough. There isn't any need to amplify the scale of his offences.

 

[Nielk]

Are you saying that Coyne wasn't allowed to tell patient groups that he was considering withdrawing his support because he was frustrated by the behaviour of some other advocates? And that in choosing to do so he was deliberately and actively 'terrorizing' them?

Yes.

 

[Stewart]

Yes.

You've just said three posts up that it's "okay to disagree with tactics, form and style" - are you now saying that it *wasn't* okay for Coyne to publicly disagree with the 'tactics, form and style' of other advocates?

- ostracize Coyne from our community.

What form do you think this ostracization should take?

 

[Nielk]

You've just said three posts up that it's "okay to disagree with tactics, form and style" - are you now saying that it *wasn't* okay for Coyne to publicly disagree with the 'tactics, form and style' of other advocates?

I think it is fine to disagree with style but it is not fine to threaten punishment if you don't agree.

Edit to add:

What Coyne basically did was act as a fascist. He was attempting to force the community to agree with him - to go against those advocates, apologize to him or else!

 

[Nielk]

What form do you think this ostracization should take?

I don't think his "help" should be sought any longer.

 

[richio76]

Good question. I have been accused here on this thread that I am telling/dictating people what to do - so I hesitate. But, in an ideal world, this is what I would want to see.

It is the basic steps that are advised in any abusive situation.

- acknowledgement that what Coyne did to advocates and all of the community is wrong.

- show support to those who were most victimized.

- ostracize Coyne from our community.

I know that many will jump on me for the last statement but since you asked what I wanted - there it is.

I have stated before that I can't make anyone do anything. Everyone is free to think and do what they like.

Here's my concern with this. There are quite a lot of academics, particularly in the US, who have recently been drawn to our cause, or certainly to the cause of re-evaluating PACE. This is important, because the stereotype of us as deluded extremists in denial about the true nature of our illness has kept most away in the past. We are incredibly lucky to have caught their interest, mostly due to David Tuller, but, in conjunction with that, through Coyne. Some of them may think he's an epic dick, but there also seems to be a great deal of respect for his professional work in the field of psychology. As egotistical as he is, he is also extremely high functioning and sharp to the issues within PACE. My worry is that if we aggressively bite one of the hands that feeds us, even if he's insulted some people along the way, that those recently drawn to our fight may back off and go back to seeing us as more trouble than we're worth.

My conclusion is that as insulting and vulgar as he has at times been to individuals, his advocacy generally benefits more patients than his pettiness. He's not right on all issues and is regularly challenged on social media by those who disagree. Personally I was incredulous when he roped Ed Shorter in to 'support' his position and told him so, as did many others. We must continue to critique his methods and ideas if we believe they are wrong, but creating a mob to aggressively drive away a respected and potentially valuable asset, an action which will be witnessed by the wider scientific/academic community, seems to me to be counter-productive. If we act like a mob we'll be seen as one again.

His attack on JB was foul and vicious, but ultimately they were just words weren't they? The impact of words is an entirely individual response. Coyne was roundly criticised at the time and ultimately surely did most damage to his own reputation. I don't like the idea that JB propagates in her tweet storm about it recently that Coyne has damaged her health and the lives of her husband and children. They were words on a page, not axe wounds to the head. In fact the whole episode saw many people rally around her and I think it actually strengthened her advocacy position. "Look, he's ranting and raving and I'm being the calm, considered one." Given the levels to which she has successfully taken her advocacy, James Coyne is surely not the greatest hurdle she has had to face.

 

[richio76]

I don't think his "help" should be sought any longer.

Is his help being actively 'sought' now though? He's just trundling along on his chosen path and he's too far down the line to countenance walking away from challenging PACE. Plenty of previously disinterested academics and researchers are watching from afar to see what the outcome is and it has now become something of a personal crusade for him. I don't think he gives a feck what individual patients think of him now and certainly doesn't take instruction from us.