Creepy posts by James Coyne to Jeanette Burmeister

[Nielk]

No, their voices are silent through their own choice.

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. 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 - help patients get proper care and alleviate their pain.

Long time advocates also realize that there is stress involved with this type of work - many times the community does not agree and there are tensions. But, for an outsider to come in and terrorize in a very ugly and visible way some specific advocates - becomes too much for sick patients. There comes a point where health - as minimal as it is - has to come first.

In addition, the fact that some in he community are seemingly accepting of this type of bully behavior against our advocates adds to the atmosphere that these advocates are not important and are as @Valentijn stated dispensible (I wish they would disappear).

Maybe some of us would rather spend our time actually advocating for research, research money, government support, respect by doctors etc rather than wasting time on this issue.

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. They don't say i don't have time for this stupidity I need to advocate.

But in this situation, what I hear from members here is that they do not want to waste their precious time on this - moreover they are angry that this is even brought up. I am trying to understand why this coldness?

 

[Esther12]

Even if Coyne had behaved much worse than he already had, I'd still post his blogs if they made interesting points relevant to PACE etc. I'm not going to cut myself off from worthwhile information and arguments just because of the individual making them. I mainly read and discuss stuff written by PACE promoters, and that doesn't mean I think that they've behaved wonderfully!

 

[Mrs Sowester]

Are people still sharing his blogs here still @Nielk? I've noticed that since the fallout from that awful weekend he's been mostly side lined here on PR, he barely gets a mention. Isn't that best? If the man wants a fight don't reward him by going into battle.
Let's not waste energy on someone that's making themselves increasingly irrelevant.

 

[snowathlete]

My take on this whole episode:

- Coyne did some good work helping draw attention to PACE.
- the tone of JB's tweet to Collins was ill conceived.
- Coyne targeting JB in the way he did and to the degree he did was unacceptable.
- Coynes subsequent attack on others in the community, and blame of the community was unacceptable. He should apologise but clearly will not be.
- Coyne Bullying people for not taking his side is unacceptable.
- Most people have withdrawn support from him quietly, unfollowing, not sharing his posts, etc. Some have told him off privately (flame wars on social media doesn't actually help our cause).
- Continuing to dredge it up months after the event is unhelpful, and unlikely to bear fruits.
- bringing up Coynes history is a bit unjustified as it has no bearing on the recent events. It reeks of an attempt at revenge and I find it a turn off. (I am not justifying his history, only saying it isn't really relevant).

I understand people rightly feeling the situation is not just, but what is the target here? Coyne apologising? Obviously that won't be happening. Community rising up against him? Not going to happen either, it would only make it worse, and frankly we have bigger fish to fry. Most advocates are focusesd on achieving real change that benefits the wider ME community in tangible ways, and see this as an unfruitful distraction from that task.

 

[Nielk]

Are people still sharing his blogs here still @Nielk? I've noticed that since the fallout from that awful weekend he's been mostly side lined here on PR, he barely gets a mention. Isn't that best? If the man wants a fight don't reward him by going into battle.
Let's not waste energy on someone that's making themselves increasingly irrelevant.

This thread was started last week - http://forums.phoenixrising.me/inde...ersity-london-releases-pace-trial-data.46791/

 

[Mrs Sowester]

This thread was started last week - http://forums.phoenixrising.me/inde...ersity-london-releases-pace-trial-data.46791/

It didn't get much interest though, not compared to previous threads about him. I think that says a lot.

 

[adreno]

This thread was started last week - http://forums.phoenixrising.me/inde...ersity-london-releases-pace-trial-data.46791/

So now we should censor members' posts, to exclude anything written by Coyne?

 

[AndyPR]

So now we should censor members' posts, to exclude anything written by Coyne?

But that's how this works, apparently, to be on the 'right' side we have to pretend that he no longer exists. If you don't do this then, apparently, you are automatically on 'his' side and are condoning his abusive behaviour. There are no grey areas allowed, we all have to fall in line and do as we are told.

 

[snowathlete]

People are entitled to still share Coynes stuff though Nielk. The impression I'm getting is one of unrealistic goals, and anger (not necessarily from you) that not everyone in the community will conform to the wishes of those bringing this stuff up. And bizzarely that isn't much different from the kind of strange expectations Coyne has expressed himself, for which he is rightly criticised.

I myself would share his stuff if he got hold of the PLOS data or did something good exposing the dangers of MAGENTA. It wouldn't mean I thought he was a good guy, or to justify his earlier behaviour, but I care more about progress. If I shared something of his I would be doing so even though he earlier was rude and threatening to me personally, btw, it's just that I put that behaviour into perspective and didnt think highlighting that behaviour was going to help the community, given the other more important issues we face.

 

[Nielk]

People are entitled to still share Coynes stuff though Nielk. The impression I'm getting is one of unrealistic goals, and anger (not necessarily from you) that not everyone in the community will conform to the wishes of those bringing this stuff up. And bizzarely that isn't much different from the kind of strange expectations Coyne has expressed himself, for which he is rightly criticised.

I myself would share his stuff if he got hold of the PLOS data or did something good exposing the dangers of MAGENTA. It wouldn't mean I thought he was a good guy, or to justify his earlier behaviour, but I care more about progress. If I shared something of his I would be doing so even though he earlier was rude and threatening to me personally, btw, it's just that I put that behaviour into perspective and didnt think highlighting that behaviour was going to help the community, given the other more important issues we face.

I understand that I can't ask people not to share Coyne's stuff. This is a free society with free speech. Ideally would I like for the entire community to boycott Anything Coyne? Yes. I think that that's the only way to really stop his controlling and abusive ways - but I know that's not tealistic.

What I do want to point out though is that those who have expressed here that excluding Coyne's posts here would be censorship - had no problem when others here suggested that threads like this - complaining about Coyne should not exist. That is not censorship?

 

[Mrs Sowester]

Such a moral minefield!
A bully wins if we show them we care. Expression of anger, outrage, upset etc all give the bully power. A thread like this shows we care and gives a bully power. Anyone leaving advocacy or being cowed into silence gives a bully power.
Maybe this one is best treated like schoolyard politics - 'Meh' to the bully but love and support to the victim.

 

[Snowdrop]

I haven't read past post #52

To use Rogers metaphor of speaking up in the playground sounds reasonable. People should speak up when they see injustice BUT a bunch of people speaking up in defense can start to be a bunch of people bullying the bully too.
I'm horrified by Coyne's statements it seems to me that this begins to look like a mental health issue for Coyne.

On the playground standing up for a victim has to also mean diffusing the situation--leaving is that option.
I support those in the community but my advice is the same--walk away and let's get on with business.
It may be that Coyne needs to seek help--mental health issues are serious too just disengage already.
You can't make someone apologise.

 

[caledonia]

I know you have stated,

It is not just a matter of ignoring him as [USER=90]@caledonia has mentioned. That is a good tactic to use against random cyber bullying.

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

I said the same (post #36):

"If everyone ignores him, he won't be able to get narcissistic supply and he will go somewhere else." and I gave suggestions on how to do that - ban or block, and don't repost, i.e. disengage.

Getting everyone or most everyone on the same page is another matter.

Since public engagement further fans the flames, perhaps privately contacting people who are engaging and asking them to disengage would be the best strategy.

Maybe getting a critical mass of people to disengage would be enough.

 

[batteredoldbook]

But this claim doesn't hold up when the "victim" can ignore the "abuser" who said the mean things, walk away, and get on with her life. If having trouble with that, therapy is a reasonable option.

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

 

[caledonia]

@caledonia that advice may be suitable for individuals dealing with narcissists. But coyne is operating across social and blog media.... his influence is on a whole patient/activist and professional sphere. Individuals have blocked him. But he continues to influence many others. Why should established activists and professionals have to put up with being defamed by him? In addition, certain bods have been incited by Coyne to perpetuate attacks on his victims up to this day. Just blocking Coyne has not stopped it.

If there is actual defamation going on, then victims can take legal recourse.

If others have become his minions and are carrying out attacks for him, the same techniques of disengagement apply to them as well.

 

[actup]

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).

 

[JES]

I feel strong disagreement with many of the commentors here. This is not about dredging up old stuff and being petty and distracting.

It's partly about digging up old stuff though, because I don't see any new developments that warranted all this attention. I understood why Jeanette wanted to blog about Cyone last winter when the Walitt thing escalated, but it's now been six months since. I don't understand what her motives are for bringing Coyne up again and again, of course Coyne is going to respond with some snarly comment when he sees another blog post has been dedicated to him.

So no, I don't see what is exactly the relevance in any of this. Let it go and move on. Coyne has attacked her, but it's only with words. We have millions of sick patients getting the wrong treatment, which is a problem order of magnitude higher than Coyne's temper.

 

[actup]

So no, I don't see what is exactly the relevance in any of this. Let it go and move on. Coyne has attacked her, but it's only with words. We have millions of sick patients getting the wrong treatment, which is a problem order of magnitude higher than Coyne's temper.

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. Why would patients want to work as advocates after seeing Jeannette in particular thrown under the bus? A lawyer patient advocate like her is a great asset to the community. She single handedly has held HHS's feet to the fire. And no I have never had any interactions w her but have enjoyed her blogs.

https://thoughtsaboutme.com/

 

[snowathlete]

I also dislike seeing JB's mild comment to Dr F Collins treated as if it's equally as bad as what Coyne did.

I mentioned her comment specifically, so perhaps you mean me, but I didn't say what she tweeted was equally as bad as what Coyne has done, or even close to as bad as it, or even bad at all. I haven't seen anyone else say it was as bad as what Coyne has done either.

 

[actup]

@snowathlete, sorry but just meant in general. Wasn't actually thinking of your post. It has more to do with an accumulation of comments current and past.