Creepy posts by James Coyne to Jeanette Burmeister

[Valentijn]

This issue of protecting our advocates deserves revisiting.

If our "advocates" aren't willing to "protect" themselves by ceasing contact with the other party, there's absolutely nothing anyone can do to help them.

 

[AndyPR]

I feel strong disagreement with many of the commentors here. This is not about dredging up old stuff and being petty and distracting. This issue of protecting our advocates deserves revisiting.The point is that long term hardworking advocates have not been supported by the community a concept also known as loyalty. I also dislike seeing JB's mild comment to Dr F Collins treated as if it's equally as bad as what Coyne did. Do we throw every advocate under the bus who makes small mistakes and ignore the rest of their hard won victories. Way too many straw man arguments here.

Btw, I am someone who read Coyne's blogs regularly but strongly condemn his bullying tactics ( and yes he does have a long history of this-not just 14 yrs ago).

Another effort to make all of us feel bad, thanks.

So,
1. We apparently should be protecting our advocates. How?
2. We apparently, yet again, should be supporting our advocates. How?
3. We apparently, and this is a new one, should be showing our advocates loyalty. How? Is there perhaps an advocate loyalty card available?
4. Wow, a straw man argument claiming people have been using straw man arguments. Where in this thread have we done that?
5. You admit to reading Coynes blogs. Doesn't that make you someone who doesn't support our advocates? You know, you can't be in our advocate supporting gang if you read the blog of our enemy, I'm sure that's the argument from elsewhere in this thread.

To repeat something I've said here already, abusive behaviour is not acceptable. I am grateful to all of our advocates who are trying to improve the situation for PwME. But what I'm not happy with is people coming here and demanding that we should think or do something in a particular way, which, as someone else pointed out, is exactly what one of Coynes outbursts was trying to do.

Stop demanding and insisting. That may work on an advocacy level when dealing with organisations but when you are demanding and insisting on action from patients, that is getting close to bullying behaviour, and is also unlikely to work anyhow - all these strident but vague demands for actions to support 'advocates' (a term which, by the way, covers Coyne when he is being reasonable) makes me more likely to just ignore what is being said.

 

[adreno]

Can't have real discussions if you avoid addressing the point of this thread-showing advocates who have been seriously harmed by Coyne some loyalty and support. Please don't minimize the harm he did and continues to do. The victims are repeatedly blamed for standing up to him. The ostrich approach does not work w bullies.

And what are we supposed to do about Coyne's behavior? Why are we even being blamed for that? If you want to join a flame war, go right ahead. Just leave the rest of us out of it.

 

[trishrhymes]

All advocates who have been bullied have my complete sympathy. I'm grateful for what they do on our behalf and wish them well. I'm not sure what else I can do as I don't know any of them personally and I don't do twitter.

I see twitter as a bit like a playground full of dangerous toys and toddlers hyped up on sugar with no adult supervision... I really don't see the point of joining in, no real communication seems to take place other than reinforcing of already held views and bullying. I dipped my toe in and rapidly pulled it out. I suggest others do the same unless they enjoy the 'buzz' and want to risk the harm. It certainly doesn't seem to me to be a safe place for ill people to go.

This is not a criticism of advocates who choose to use twitter or a justification in any way of the bullying some have suffered. More my own self protection - I know I wouldn't cope, and I don't see what good I could achieve by putting myself in that playground. Good luck to those who do!

That's why I'm so grateful for places like PR which are civilised and well moderated. I trust the moderators to keep it a safe place for us to share without risk of harm. I do think threads like this are OK. Those who don't want to join in or read it can avoid it.

I choose not to read most of the threads where people share details of their drug/vitamin/herbal etc ups and downs of treatments some of which seem quite risky or even dangerous to me, since I have no access to experts in these, and choose not to experiment on my own. That doesn't mean I don't think they should be here.

Best wishes to all, and bless you for being here for each other.

 

[taniaaust1]

I see twitter as a bit like a playground full of dangerous toys and toddlers hyped up on sugar with no adult supervision... I really don't see the point of joining in, no real communication seems to take place other than reinforcing of already held views and bullying. I dipped my toe in and rapidly pulled it out. I suggest others do the same unless they enjoy the 'buzz' and want to risk the harm. It certainly doesn't seem to me to be a safe place for ill people to go.

This is not a criticism of advocates who choose to use twitter or a justification in any way of the bullying some have suffered. More my own self protection - I know I wouldn't cope, and I don't see what good I could achieve by putting myself in that playground. Good luck to those who do!

I feel the same and hence stay away from places like FB and twitter. I know Im too unwell to be getting myself involved in things like that.

I also see myself as having a responsibility to try to protect myself from things even if it means completely withdrawing if the going gets too tough. Its not up to others to be protecting me. My first duty is to myself and I need to protect myself. Though its very inconvienent to me and does cause me issues, I dont even now days answer my phone to strangers as Im taking care of myself by protecting myself from bullies.

I say to our advocates though I appreciate everything you do, please take care of yourself too and do not allow stuff or others to run you into the ground. If you are not putting yourself first and taking care of yourself, you wont be able to be as strong with any advocating you are doing which we all know is a very tough job when it comes to this illness. If things are getting to you, take the break from things

 

[taniaaust1]

Trying to find excuses for him is like finding excuses for a husband who abuses his wife (which incidentally Coyne was legally accused of) - saying the wife must have done something wrong, she must have enabled his rage.

this is the kind of thing Im talking about.. bringing up someones personal past history over and over can only inflame that person. I dont see how that is helpful to things at all. (BTW not doing that doesnt mean that someone doesnt feel its wrong what he did in the past).

Maybe you yourself and others are leading to our advocates being attacked so badly by further inflamming Coyne. So see, we think very differently about things and react in different ways though I do think what he is doing is certainly wrong but "to me" that isnt the right way to deal with it. and I should have the right to hold this view without being accused of not caring about our advocates.

I actually dont see anything wrong with your and other reactions as I respect we all have different views on what will worsen and what will help sensitive situations and I just hope that at some point you and others can have the same respect towards those in our communities who dont act in the same manner as you.

So - the community wants to ignore this and continue to engage him and show him respect - that in my opinion is enabling the continuation of the bullying.

The only way to stop his bullying is for the community as a whole to disengage from him.

this is where we have to disagree that this is what enables the continuation of the bullying. He's a guy who I dont believe would give a crap if the whole community was against him. I dont understand, how it is to disengage from him as you are saying the community needs to do to stop his bullying, I see doing what you suggest to be the opposite and just be fueling him.

Sorry I see that what you and others are doing to be making the situation worst, so disagree that this is helpful to the advocates. So we will have to both disagree with this

We as a community arent even really standing back at this, look how many of us actually made comments that we do not agree with his actions and he's even been called a dick along with a bully by many of us who are being accused of standing back and doing nothing. We've made it clear we do not agree with his actions.

 

[taniaaust1]

Nobody can make me do anything, I wonder how it is that Coyne has all this power over people.

No-one can make me do anything either, if I want to advocate for something I will do so. I esp wouldnt allow someone who is like this one is being to dictate what I do or do not do. It always my own choice when I want to speak up and when I dont.

I do not understand why people have given him so much power over them. He reminds me of a school kid.

 

[taniaaust1]

I would think that members of a forum for patients suffering from a disabling disease would be more compassionate and understanding of other patients' experiences. We are not talking about healthy people here.

exactly and hence maybe there should be more understanding going on about how thee patients also may not want to get too involved and end up sicker themselves. There should be understanding towards those who do not have the health to be involving themselves in this. At the moment all that group is receving is accusations that they must be on the side of Coyne for this instead of people respecting others health.

Most advocates who are also advocates expend efforts many times beyond what they are capable and pay the price for it, yet they push forward because they believe they are doing important work

If anyone one of us pushes beyond our own limits, that is our own choice to make and shouldnt be put onto others if we crash and burn due to this. If I do too much advocacy or get too involved in advocacy and make myself sick, its not the communities fault for this.

Because it's impossible to do both? One cannot be an effective advocate and show compassion for other advocates who have been brutally harmed? They are stating that they have been harmed. They are stating that their health has been adversely affected by this. It is inconsequential whether you personally would have felt the same way. Where is the compassion?

There are so many threads on this forum where patients talk about how they feel. They talk about situations where they have been harmed and I am proud that PR members are so supportive and really help these patients. They listen to their problems and either try to give advice or just tell them they understand.

Im sure if those who have been harmed by what they are trying to do were posting in the emotional support forums, they'd certainly get emotional support from the community just like any other one does. You are trying to make it sound as if we'd treat them differently.

I am trying to understand why this coldness?

Some coldness I do think has happened as some are basically starting to bully the patient group who has a different way of dealing with things to what they themselves do. This is causing some to feel badly towards others, rather then being in this all together.

 

[taniaaust1]

blame, blame, blame, blame.. Im so sick of hearing those with ME/CFS blaming others with ME/CFS for things. Its something we as a community shouldnt be doing, we should be all working together more and stop picking on one another.

is blaming others really going to gain more support

 

[Mrs Sowester]

If our "advocates" aren't willing to "protect" themselves by ceasing contact with the other party, there's absolutely nothing anyone can do to help them.

And if, 6 months after the initial spat, Jeanette publishes a blog criticising Coyne what does she expect him to do? If you walk back into the lion's den and start pulling his whiskers the very least you must expect is a few scratches and a light mauling.
I understand the anger Jeanette feels, her interaction with Coyne in the spring has caused her a flare-up, so why invite more? I just don't get it. And to draw other people into the drama and risk worsening their health too?? How is that right?
It begins to look a lot like rabble rousing, playground politics with Jeanette trying to get her gang to oust his gang when she doesn't need to do that. She's lost some of the moral high ground she held. Yes a minority sided with Coyne re. his initial attack on her about the tweet that started this whole episode, but it was clearly a minority and even that support was dwindling.

So, in summary my personal feeling is; Yes, Coyne is a dick, but Jeanette's blog post was a dick move.

 

[Mrs Sowester]

"If that's justice then I'm a banana".

There is no justice to be had in this situation. People are flawed and this is not a just universe. There is no god, there is no karma. Shit happens.
Random good stuff happens too though, which is nice

 

[Nielk]

[

blame, blame, blame, blame.. Im so sick of hearing those with ME/CFS blaming others with ME/CFS for things. Its something we as a community shouldnt be doing, we should be all working together more and stop picking on one another.

is blaming others really going to gain more support

My posts that you quoted were in reply to those who said we should not have a thread here on PR about this. They did not want to hear about the drama.

You also missed quoting me where I said this is a free society with free speech and no one can tell anyone what to do just like I can't stop people posting threads here sharing Coyne's blogs because that would be censorship, I feel that not allowing this thread would be censorship as well.

 

[Nielk]

I have to admit that I was wrong.

I was wrong with my assessment of what this community is and maybe we are not a community at al. Maybe we are just individuals who just happen to share one common disease - yet with no real connection.

A community, like a family have members who agree or disagree about things. They might not see things the same way and they might not share the same values. But, a family member is attacked by an outsider, the rest of the family has their back.

If your sister tells you that she has been abused and harmed to the point where she is sick and can't function by a controlling man, do you tell her - I don't want to hear drama? Would you tell her - stuff happens, just deal with it? I don't want to talk about it?

Would you invite this man into your house and treat him with respect?

 

[skipskip30]

There is no justice to be had in this situation. People are flawed and this is not a just universe. There is no god, there is no karma. Shit happens.
Random good stuff happens too though, which is nice

Thats the key part of this, there is no justice with online trolling or bullying. You have to block and move on or things will just get worse and worse. I simply don't have the energy to support people I don't know that won't accept that.

 

[Mrs Sowester]

I understand your anger Neilk. But I don't know how you would like to see the community react.

In your analogy with the abused sister I personally would comfort the sister and ghost the abuser. But if the sister kept going back for more in the hope she could change him I'd say to her 'What do you expect?' and get her a good therapist and give her books about abusive relationships.
But if the sister insisted on hitting her head against that same brick wall that would be her choice. I wouldn't like her choice but I would have to respect it.
It wouldn't be my responsibility to knock the brick wall down. It is her responsibility to walk away from it.
To take the matter into my own hands would be to rob her of agency.

 

[Nielk]

I understand your anger Neilk. But I don't know how you would like to see the community react.

In your analogy with the abused sister I personally would comfort the sister and ghost the abuser. But if the sister kept going back for more in the hope she could change him I'd say to her 'What do you expect?' and get her a good therapist and give her books about abusive relationships.
But if the sister insisted on hitting her head against that same brick wall that would be her choice. I wouldn't like her choice but I would have to respect it.
It wouldn't be my responsibility to knock the brick wall down. It is her responsibility to walk away from it.
To take the matter into my own hands would be to rob her of agency.

I totally agree with what you are saying here. And by the way, I would describe my feelings more like sadness and disappointment at this point than anger.

What I would like to point out is the following:

- Jeannette is not speaking out now for herself. She is speaking out for the benefit of others.

- Although this aggression took place a few months ago, to a lesser extent, it is continuing (not with Jeannette - but with others)

- The bully has recently made public comments that he plans on continuing this behavior.

- The bully is continuing to be invited and welcomed in the family home.

 

[AndyPR]

I have to admit that I was wrong.

I was wrong with my assessment of what this community is and maybe we are not a community at al. Maybe we are just individuals who just happen to share one common disease - yet with no real connection.

A community, like a family have members who agree or disagree about things. They might not see things the same way and they might not share the same values. But, a family member is attacked by an outsider, the rest of the family has their back.

If your sister tells you that she has been abused and harmed to the point where she is sick and can't function by a controlling man, do you tell her - I don't want to hear drama? Would you tell her - stuff happens, just deal with it? I don't want to talk about it?

Would you invite this man into your house and treat him with respect?

What a ridiculous argument. But to use it further, in effect all you are doing is contacting members of the family, who can't do anything about the situation, and telling them how they are bad family members because they aren't doing anything. No matter that they agree that the abuse isn't right or fair, and that they are thankful for the sisters hard work on their behalf. Nope, that doesn't matter, as we are family members we should feel bad about the situation and are encouraged to reflect on our inability to do anything, as that shows how bad we are.

 

[Esther12]

I was wrong with my assessment of what this community is and maybe we are not a community at all. Maybe we are just individuals who just happen to share one common disease - yet with no real connection.

We are just different individuals, brought together by a shared experience which encourages sympathy and understanding of one another, but a lot of whom still disagree with each other and don't naturally get on. I expect that the vast majority of patients have never been on PR, tweeted about the PACE trial or joined a patient group on facebook.

I think that some people can assume there is more of a cohesive 'community' than there is, perhaps because we naturally drift towards spending most of our time with those that we get on with best. Lets remember, there are patients who dislike attempts to criticise PACE and have spoken out against them. Amongst those who fall ill you will find almost every possible view-point.

 

[Nielk]

What a ridiculous argument. But to use it further, in effect all you are doing is contacting members of the family, who can't do anything about the situation, and telling them how they are bad family members because they aren't doing anything. No matter that they agree that the abuse isn't right or fair, and that they are thankful for the sisters hard work on their behalf. Nope, that doesn't matter, as we are family members we should feel bad about the situation and are encouraged to reflect on our inability to do anything, as that shows how bad we are.

You have totally twisted everything I said to fit your narrative that all I'm accomplishing here is blaming others.

 

[AndyPR]

What I would like to point out is the following:

- Jeannette is not speaking out now for herself. She is speaking out for the benefit of others.

And is helping to inflame the situation by the sounds of it.

- Although this aggression took place a few months ago, to a lesser extent, it is continuing (not with Jeannette - but with others)

And they should either report the situation to any authority that might be able to take action. If there isn't then they will have to deal with it as any of us have to deal with an online bully or troll by ignoring, blocking and/or avoiding contact.

- The bully has recently made public comments that he plans on continuing this behavior.

And? Again, we can do nothing about that.

- The bully is continuing to be invited and welcomed in the family home.

As has been stated by others already, Coynes stock has plummeted due to his actions. If/when he starts acting like a reasonable person and starts advocating on ME again then I will report that on the forums here, assuming it hasn't been already, but that still does not mean that I condone his abusive behaviour.