James Coyne explains: "The limits of empathy"

[Merry]

Thanks for that correction. I saw the tweets from November, did Coyne apologise about that misunderstanding? If that is the right misunderstanding, he did.

Can anyone remind me who AK is (sorry)?

I don't know what is wrong with me but I just can't see anything wrong...

I may be mistaken, but I think Angela Kennedy is a British academic whose child is or was ill with ME. I also have in my mind -- and, once again, I may be mistaken -- that "Angela Kennedy" is a pseudonym.

I just thought it was odd that the record that Angela wanted set straight, here in this thread, is that rather than getting blocked for what she said in a private message, she was blocked for publicly criticizing Cort. She wants to make sure he knows she is criticizing him?

When I first joined Phoenix Rising in 2010, Angela Kennedy was active there. I remember her as ferocious. Was she banned from Phoenix Rising?

Sorry, @Empty, I don't know enough. You might try contacting Dx Revision Watch.

 

[Merry]

Now that I've looked at the link Dx Revision Watch provided to Angela Kennedy's Twitter account I see that she complained about me spreading misinformation about her. This is bizarre.

 

[Dx Revision Watch]

The irony. The truth actually makes Angela look worse. This is, after all, Cort's website.

I am new to Twitter and only joined to follow James C. Coyne and only understand snippets of what is going on. I saw no tweets by Angela.

Twitter is definitely not a good format for discussing issues. Dueling with hatpins.

Merry, if you cannot view Angela's tweets or Coyne's responses, which preceded his blocking of Angela and his threats to encourage others to also block her, then I don't see you have any basis for saying "The irony. The truth actually makes Angela look worse. This is, after all, Cort's website."

 

[Dx Revision Watch]

I may be mistaken, but I think Angela Kennedy is a British academic whose child is or was ill with ME. I also have in my mind -- and, once again, I may be mistaken -- that "Angela Kennedy" is a pseudonym.

I just thought it was odd that the record that Angela wanted set straight, here in this thread, is that rather than getting blocked for what she said in a private message, she was blocked for publicly criticizing Cort. She wants to make sure he knows she is criticizing him?

When I first joined Phoenix Rising in 2010, Angela Kennedy was active there. I remember her as ferocious. Was she banned from Phoenix Rising?

Sorry, @Empty, I don't know enough. You might try contacting Dx Revision Watch.

Merry, Angela Kennedy works and publishes under her own name.

She is a sociologist, lecturer and author of:

http://www.amazon.co.uk/Authors-our...sr=1-1&keywords=Authors+of+our+own+misfortune

I will shortly post screenshots of her comments on Twitter, then you can rely on what was actually posted on Twitter.

 

[Merry]

Merry, if you cannot view Angela's tweets or Coyne's responses, which preceded his blocking of Angela and his threats to encourage others to also block, then I don't see you have any basis for saying "The irony. The truth actually makes Angela look worse. This is, after all, Cort's website."

I meant that I had not seen any tweets by Angela in James Coyne's feed a few days ago, before I answered @Empty's question. Look, I was just making conversation with Empty. I qualified my post by saying I have trouble following conversations on Twitter. I qualified my sentence on Angela Kennedy with "I think." Why are you pressing me on this? I am in poor health.

 

[Merry]

Do I understand the situation correctly that you are a friend of Angela Kennedy, and you are angry at James Coyne and Cort Johnson and are here to harass me?

 

[Dx Revision Watch]

I am not continuing with this, Merry, you are not being "pressed". I have corrected misinformation and I can't see that continuing this exchange is going to be productive.

 

[Empty]

I meant that I had not seen any tweets by Angela in James Coyne's feed a few days ago, before I answered @Empty's question. Look, I was just making conversation with Empty. I qualified my post by saying I have trouble following conversations on Twitter. I qualified my sentence on Angela Kennedy with "I think." Why are you pressing me on this? I am in poor health.

Thanks for your efforts in trying to answer my question @Merry. Much appreciated. I am sorry I tagged you specifically for some information, I usually try not to do that because it creates a burden on members who are sick already. It is clearly also a sensitive topic and can be really difficult to tease out all the knotted conversations. You are clearly just trying to help me out.

We do our best to convey what we know in earnest and @Dx Revision Watch we do are best to speak up and correct what we think needs correcting.

 

[Merry]

@Empty, thank you for your kind words. Don't worry about having tagged me; I enjoy talking to you.

 

[Empty]

If not already on this forum, this thread bears scrutiny, too:

https://www.facebook.com/groups/5804522506/

Thanks, but I can not access that.

 

[Dx Revision Watch]

Thanks, but I can not access that.

Some of that thread has been archived here. Invest in ME has currently locked the thread while it reviews the content:

https://drive.google.com/folderview?id=0B1hvPDijFCa3d3dTdmZqOW1SMms&usp=sharing

 

[Empty]

Some of that thread has been archived here. Invest in ME has curre"ntly locked the thread while it reviews the content:

https://drive.google.com/folderview?id=0B1hvPDijFCa3d3dTdmZqOW1SMms&usp=sharing

Is this all on twitter? I do not know how I am missing it all.

Is this the tweet that has caused this outburst?


"AK retweeted:
Jeanette Burmeister@jkburmeister feb22

@NIH Director Not one bit embarrassed that Walitt works for you, hurts very sick patients? What an agency you run!"



This leads Coyne to say:
"This is absolubtely unacceptable trolling and harrassing of the head of NIH. If something is not done about it, am withdrawing from the struggle.

Now is the time for the patient community to show some leadership or I am out of here".

COYNE again:

"you just don't get it. There is room for lots of opinions about NIH, but not for this kind of pre-emptive behaviour.

Individual patients are sick and weak, but the community can be strong. But it is not, I am saying everybody can fuck themselves"

Another tweet asked him to modify his language as children were part of the community.

Is that the cruxed of it?

 

[Empty]

Coyne wants a collective community apology.

Ok. So there is a thread here on him threatening to quit. I am glad the op begins by questioning if that is trolling and harrassment as I don't think it is all.

Am going off to read it now.

http://forums.phoenixrising.me/inde...s-to-withdraw-from-the-me-cfs-struggle.43321/

 

[IrisRV]

I think James Coyne needs to consider the nationalities of his worst critics. There may be some cultural issues involved. Sometimes we misunderstand each other's manner of speaking. Some people find it easier to criticize people with a different style of speaking than to focus on the issue. It goes both (or multiple) ways, I imagine.

Some people are "proving" to the public, the media, and researchers that cfsme patients will go after anyone, including those trying to help the community. This is not a good move politically.

 

[IrisRV]

Coyne wants a collective community apology.

I will not personally apologize for other people's behavior. If he wants acknowledgement that many of us support him, I'm all for that. I'll say it now. I support James Coyne. He sometimes says things I wouldn't. That's not necessarily a bad thing.

Most sucessful advocates use powerful, even aggressive language. It appears to be necessary in some cases. What smart and successful advocates know is that they should focus that language on the worst of the opposition. Using it on those genuinely trying to help, even if they aren't always going about it the way we want, is counterproductive to say the least. There are many much better and more effective targets.

Publicly attacking community members who see political issues differently than you do is far beyond counterproductive. It is destroying the community and the possibility of successful advocacy from the inside. Worse than shooting ourselves in the foot. More like shooting ourselves in the head.

Coyne has a point. We're heading in the direction of not needing the BPS school to screw us. We're beginning to screw ourselves. For shame!

 

[Empty]

Coyne wants a collective community apology.

Ok. So there is a thread here on him threatening to quit. I am glad the op begins by questioning if that is trolling and harrassment as I don't think it is all.

Am going off to read it now.

http://forums.phoenixrising.me/inde...s-to-withdraw-from-the-me-cfs-struggle.43321/

Ok. I have a clearer understanding. Pretty much the same as my instinctive response. I think I will always be grateful to Coyne for the PACE trial stuff and talks. That is never going to change. Even if he continues all the attacking and mental meltdown stuff. I still thank him. I hope his health is ok. (@Roller on PR LOL Fredds protocol - I have wanted to lighten it all up with humour too but I am worried that something is seriously wrong )




Now I have seen some of the work of Jeaette B. I am moreso grateful. I don't know if a thankyou card got sent but I would have signed it. I think there was absolubtely NOTHING wrong with her tweet.

I see being asked to block AK as divisive and these other ploys as highly manipulative. JB has done a blog ad the relevant bit can be seen on the link.

http://forums.phoenixrising.me/inde...ithdraw-from-the-me-cfs-struggle.43321/page-8

It would b good to have a link direct to JB blog.

The only real anger I can see from JC. If JB had said NIH go fuck yourselves you crazy bastards, then this would not be approriate and is abusive, but she was polite!

I wholeheartedly object to Walit being appointed in any part of the trial and it is beyond distasteful, inappropriate and unscientific. I concur the result is likely to be PACE on steroids. The Americans always do things bigger and better.

 

[Seanko]

Hmmm...James Coyne trolls UK journalists & academics then is trolled by a patient/carer...It can be a mad, obsessive world on Twitter with people over reacting to everyone & everything. I abandoned it for 6 weeks last year in the middle of the latest PACE drama because I was bored and could not read the sport & news feeds I follow without coming across histrionic behaviour.

Facebook is just as bad with individuals associated with one charity trolling the pages of other ones...

Goodness knows what is happening at PR...

The only ones to benefit from all of this are certain psychiatrists smiling knowingly as they try to say ME/CFS is all in the mind...(they are probably also stroking a white cat)

*sigh* x24

[bimg=700|no-lightbox]http://static.tvtropes.org/pmwiki/pub/images/blofeld_5403.jpg[/bimg]

 

[Seanko]

Jeannette Burmeister details her argument with James Coyne below. Please note some of the comments made by James Coyne are not for the easily offended.

http://thoughtsaboutme.com/2016/02/29/has-the-coyne-of-the-realm-been-devalued/

 

[Empty]

Jeannette Burmeister deatils her argument with James Coyne below. Please note some of the comments made by James Coyne are not for the easily offended.

http://thoughtsaboutme.com/2016/02/29/has-the-coyne-of-the-realm-been-devalued/

Thanks for finding andpostingthis link @Seanko. I have now read it all. All very well said. 100%.

 

[Seanko]

@Empty not knowing all the background & what was said, it is all very bizarre. How these feuds help any of us is a mystery. :S
More positively there do seem good things going in different countries on although rather slowly.