Creepy posts by James Coyne to Jeanette Burmeister

[acouchy]

Watching all this unfold is truly disturbing. He is not an ME/CFS patient or advocate. He will never fully understand what it is like to have this illness and just how little physical and mental energy we have. Pwme should ignore him. We should be using the little energy we have to support researchers. This is a huge unwelcome distraction and we should not play whatever game this is.

 

[barbc56]

I would have thought that the community would come together in support of these advocates - but I guess I was very wrong. I wonder how those who don't want to hear about this would feel if they were the ones who were the object of constant abuse by a deranged bully, making them very sick to the point where they can't continue with their advocacy work - and others would say - I don't want to be bothered hearing about this spat

Not at all! I can't speak for others but this is getting to be a who has done worse than the other issue. How is that productive?

Now another post has been bumped. Why do others want to keep this issue going?

If someone lets a cyber bully get to them, after a l time, you're just ruminating and holding a grudge. He's an idiot. This is an internet spat. Keep that in perspective.We are adults not teenagers. While I would not wish this on anyone, it's should be handled like trolls on a forum. Don't feed them. Anything we do It will not change his behavior.

What do you want to do tar and feather him?

 

[batteredoldbook]

Hi @batteredoldbook
Best to walk away.

Hello there.

I don't think the M.E community can walk away in silence from abuse on this scale with any credibility left and I don't see a way forward for M.E advocacy at this point. See my conclusions here: https://justpaste.it/x1yi

M.E advocacy, for me, was about standing up against mistreatment of people with M.E (pwme). I don't really care if abuse comes from medicine, society or from within the M.E community itself. It is harmful. It is wrong. It adds to the already crushing burden that pwme carry. It added to my burden and it hurt me. I think if we don't care for each other, and don't stand up for each other then we can hardly expect anyone else to.

I have no major interest in Professor Coyne. I feel he shows no sign of taking responsibility for his actions. I do however care greatly that, overall, a community that I worked so hard to represent shows so little care for me and for others who have worked so hard and suffered abuse through no fault of their own.

I do feel the M.E community walked away from myself and others.

 

[JamBob]

Seems like the ME advocates are giving as good as they get. I'm not sure how it is relevant to bring up highly personal issues that may have happened decades ago in the context of ME spats on twitter.

 

[Esther12]

I think it was totally misguided for Coyne to think that there was some 'community' that could police tweets that might be unhelpful. And I don't think that there is a community that can police Coyne's tweets either. We're just people who fell ill, and generally, we don't have the energy to spend on that sort of micro-management of other people's lives. If we had spent our time trying to do that we'd have never achieved anything of value.

I can get sucked in to internet disputes, and it is quite noticeable to me that those who avoid doing so are also those who have done the most to achieve important things with PACE, etc.

Also though there is something to the idea that, if you're not interested in a thread, just don't read it. We all have different views about what is most important. If other people think that they can achieve something worthwhile here, good luck to them.

 

[*GG*]

I would have thought that the community would come together in support of these advocates - but I guess I was very wrong. I wonder how those who don't want to hear about this would feel if they were the ones who were the object of constant abuse by a deranged bully, making them very sick to the point where they can't continue with their advocacy work - and others would say - I don't want to be bothered hearing about this spat.

Is there a thread on this? Maybe I missed it? Not sure what I can do, but am open to hearing what might help. What kind of support do they need?

GG

PS If you know these people in person, I guess you might have some intimate knowledge, but with the way this illness works, how do we know there health went down do to conflict via advocacy work?

 

[Nielk]

I can get sucked in to internet disputes, and it is quite noticeable to me that those who avoid doing so are also those who have done the most to achieve important things with PACE, etc.

I just want to state that some of these advocates that Coyne picked on were ones that have worked on PACE for many years. They did not get involved in any disputes. Coyne picked on them because of his desire to silence a specific voice of advocacy.

It is a mistake to assume that this has been a two sided spat. It has been Coyne picking and abusing sick women.

 

[Nielk]

This was posted by Edward Burmeister (husband of Jeannette) on Facebook.

"I want to thank all of you for your heartfelt support for Jeannette. I passed it on to Jeannette and it really means a lot to her as it does to me.

I do want to make one point. Jeannette was not fishing for support for her personal situation with her post. Her purpose was to provide food for thought for the ME community and how it deals with (1) an authority figure who is a serial abuser of sick ME patients who express critical views of ME-related government agencies and programs and (2) advocates who do not automatically fall in line with those organizations and leaders in the ME community who promote cooperation with these government agencies and who often (directly and indirectly) seek to stifle criticism of these agencies and the various programs they promote or adopt.

Jeannette felt it important to correct the much-distorted record of the entire Coyne episode and to hold up to public scrutiny the issue of ongoing support of Coyne (in some cases by respected professionals) and its chilling effect on legitimate critical dissent."

 

[Nielk]

Is there a thread on this? Maybe I missed it? Not sure what I can do, but am open to hearing what might help. What kind of support do they need?

GG

PS If you know these people in person, I guess you might have some intimate knowledge, but with the way this illness works, how do we know there health went down do to conflict via advocacy work?

Some of the advocates who have publicly stated that they have been attacked are Jeannette Burmeister, Suzie Chapman, Angela Kennedy and David James Chapman. There are others but I don't know if they want their name in public.

I think that one way that we can show support for these advocates is with a unified statement from our community to Coyne stating that anyone who abuses and bullies members of this community has no place in it and he is not welcome in this community.

 

[*GG*]

Some of the advocates who have publicly stated that they have been attacked are Jeannette Burmeister, Suzie Chapman, Angela Kennedy and David James Chapman. There are others but I don't know if they want their name in public.

I think that one way that we can show support for these advocates is with a unified statement from our community to Coyne stating that anyone who abuses and bullies members of this community has no place in it and he is not welcome in this community.

Start a Petition or something, I will sign it!

GG

 

[Kati]

Some of the advocates who have publicly stated that they have been attacked are Jeannette Burmeister, Suzie Chapman, Angela Kennedy and David James Chapman. There are others but I don't know if they want their name in public.

I think that one way that we can show support for these advocates is with a unified statement from our community to Coyne stating that anyone who abuses and bullies members of this community has no place in it and he is not welcome in this community.

I advocate for competent health care and research funding. I have no energy for drama within the patient community.

 

[Richard7]

I understand the desire to be a bystander, I feel I have neither the energy nor wit to do anything. I am not on twitter or facebook. I do not have a blog.

The thing is that to be a bystander is not just to allow the bully his or her way, which would be bad enough. But, as I understand it, at least in the school playground, in the minds of both the bully and the victim people who stand by and say nothing are people who support the rightness of bully's cause and actions.

And, not to single you out @Kati, but your's is the most recent comment before mine, and I would say that if we are to advocate for competent health care or research funding it is by at least implicitly by appealing to some sort of common humanity with non patients who are busy with their lives and not much interested in the drama of our lives.

To an outsider, even if that outsider is a politician or a doctor or a journalist the disputes between different views on the aetiology and treatment of ME/CFS may seem to just be drama in the medical/scientific/patient community that they do not want to trouble themselves with. The disputes between parents and social services about who is fit to look after their children with CFS/ME are much the same, as is the decision to spend money on PACE rather than something else.

 

[actup]

History has proven over and over again that remaining silent while members of our community are abused, makes us complicit in their abuse.

Protecting free speech is not just "drama" but rather, essential for accomplishing our goals. I found this short PR thread from last March kind of inspiring:
http://forums.phoenixrising.me/inde...ainst-unfair-treatment-of-me-advocates.43435/

 

[taniaaust1]

Who is he? He is only vaguely on the periphery of my awareness and I was under he impression he was on our side?

You've just put it there and its always been a part of the whole issue with the way I see it "sides". He's someone who came along and having no previous interest in ME/CFS (as far as Im aware) saw huge issues in the PACE trial so as someone who speaks out about problems such as things like that he spoke out.

This caused him to suddenly become in the eyes of the ME/CFS community as like a saviour to many who then dumped onto him pleading to save us, wanting this guy to do more, to then take up our cause and like side with us. (all he was interested in I believe was truth, its nothing to do with sides).

As a group, putting this guy suddenly on this great pedastal, that is how we were then coming across due to the expectation so may put onto this guy, someone who didnt really have a ME/CFS interest as such but was just interested in the bad science. (I felt sorry for this guy at this point as I didnt agree with what the ME/CFS community was doing with pressuring him, just like how anyone who does good things for us suddenly often gets pressured to do more eg Im seeing that a lot likely lately re Countess of Mar and people saying to contact her to do more).

He didnt cope with this pressure of what must of felt like a whole community put onto him an which caused him at this point to actually start to see as like working as one and then cause he'd gotten that view, we from there saw some strange posts of his start up.

eg Him ordering this community to boycott Jeanette Burmeister when she made some comments about the head of the NIH which caused him to gain the view that she was damaging this community. (of cause him being so new to the ME/CFS scene, he couldnt have understand the kind of things which have lead our advocates to such comments couldnt have understood Jeanette).

He got the idea that this community all works together so from that seemed to get the idea that we could get someone to take over like a leadership role within the community. Of cause that can never be done as the ME/CFS community cant even agree on simple things such as a name or a defination.

anyway, the way I see it is that this guy blew up with all the pressure which was put onto him and then tried to separate himself from the whole ME/CFS community by then making not nice comments towards us which he did achieve his wish of gaining some separation and getting the pressure of the community wanting him to save them off his back. (whether he did made horrid comments with the attention to get many off side to him or not I dont know but who knows it could of even been purposely done to offend to get the ME/CFS community off his back.

He's one I'd like to see onside but I think the only way that could even happen if if he wasnt being pressured. I believe that he is a person who just likes to do his own thing.

There may also be a method in what appears to be his madness. If he was a very clever guy, he may well believe he can do more for us by NOT being seen as being one of our advocates and as "being on our side" and rather just being on the side of good science. (I'd love to get into that guys head to really know how he thinks and feels rather then see what he just chooses to express).

I dont think its a good thing for this community to be bogging themselves down in all the shit going on between people, its not going to help the situation and wont help it settle. I just hope James Coyne knows what he's doing and do hope he will continue to advocate bad science including our science. Maybe we should all take a step back and just allow him to do that.

Due to people getting upset, its ended up like squabbling children trying to drag others into it. I see this harmful to the community, we do not have the energy for this. Nor does it make the ME/CFS community look good. Best not getting involved if you havent followed this all from the start to see how things all flowed out and lead to where they are now.

 

[Cheshire]

IMO, there's nothing that could be said to excuse Coyne's behaviour. He's the archetypical bully.

I understand that Jeanette has been upset. Being attacked on the internet is not trivial.

But I can't agree with the way Coyne's excuses have been erected as a central matter for the community:

- as @caledonia said, IMO the only thing to do is ignoring him. He will never apologize, never. Expecting that is useless.
- those who defend Burmeister are in a position of all or nothing. You have to be on Jeanette's side, otherwise you're on Coyne's. Can't we be neutral? As I said I condemn Coyne's acting, I understand Jeanette's been upset. But let's put things into perspective, if being insulted publicly is very unpleasant and stressful, there are far worst and outrageous things going on. The issues of GET, CBT, the way patients are treated on a daily basis seem to me way more important.
- all that is giving Coyne too many attention, which is what he's so pathetically looking for.

But I don't understand either why @Kina says this issue shouldn't be discussed here. Why shouldn't @Wildcat bring this problem on PR? I'm perplexed.

 

[taniaaust1]

Where was Coyne in 2010, when Suzy Chapman and other UK ME activists were trying to prevent Esther Crawleys Smile trial... a study of Lightning Process on children with ME?

other UK ME activists were trying to prevent Esther Crawleys Smile trial... a study of Lightning Process on children with ME?

Did Coyne even know about the PACE trial issues back that far or of the issues with our research back then? If not this probably isnt a fair statement to be makng.

 

[taniaaust1]

A "drama"? ..... -Suzy Chapman being repeatedly defamed on twitter by Coyne. Uk and US ME activists being ongoing defamed on social media. UK ME sufferers being bullied in Facebook forums by Coyne and his followers.... many ME sufferers were confused and frightened by his aggression and could not understand his aggressive ultimatums to them m to 'apologise'to him for something they knew nothing about.

ongoing trolling of
Coynes victims.

Coyne making gross comments to me sufferers...


What is the 'drama' you are objecting to?


Have you noticed the absence of dxrevisionwatch and other long term activists?

Hi Wildcat, I dont at all agree with James Coyne's posts, its completely untasteful and he has been very disrespectful to our community but I dont think its going to help any at all by gathering people into this battle or making it bigger. Or turning it into a bigger drama then it is now. I dont understand why people want to seem to want to further fuel all this. Where will this get us? Its having bad impacts on our community.

This isnt a side thing to me as Im not taking any side in this.. I just think this whole battle thing is wrong and do wish people would start being more respectful to one another. Surely the ME/CFS community has more important things they should be focusing on eg our advocate efforts etc.

 

[taniaaust1]

I'm ignoring everyone who perpetuates this mess. I'm completely fed up with every side of it, and everyone involved. I'd rather pretend the people involved simply didn't exist.

Im feeling sorry for everyone involved, its such a horrid mess and they do need to all move on.

 

[taniaaust1]

The darker component of Coynes behaviour, ie shutting down objections to government sanctioned research with psychosocial researchers, appears to have been swept under the carpet in the rush to dismiss objections to Coynes behaviour as "drama".

and what is the good of attacking him going to do? it will just further get him offside and keep this whole thing ongoing. and this thing is damaging to us.

If people leave him be and he continues in such poor and aggressive behaviour, he's the only one who will end up looking like an ass. Where as if others keep flaming him, he makes him look less bad to others as they will see others as fueling him (and that is what its currently looking like to me as one from just PR and who doesnt use FB).

This isnt about abandoning our advocates by stepping back and not getting involved with this but more so giving him a better chance to hang himself if he wants to keep acting in bad ways. Let it be him looking like he's causing all the drama and not let it look like it is any of our advocates.

 

[taniaaust1]

Why doesn't Burmeister ban Coyne from her blog and be done with him? Seems to be wanting him to stir it up so she can complain. If she has an issue with him, shouldn't it be dealt with on her blog rather than here.

I want to know that too... or if he's attacking her elsewhere why not use the forum rules of whereever this is happening to get him banned or blocked for bad behaviour.

I do not understand at all why one wouldnt put a stop or just ignore this so the other looks like an even more dick.

this has dragged on far too long already and is unfortunately damaging to both Jeanette and Coyne's reputations.