James Coyne standing up for pts with ME like no one else

[Luther Blissett]

I've created a couple of memes if it's of any use to people.

http://i.imgur.com/qGM9uU0.jpg

and

 

[GreyOwl]

https://twitter.com/i/web/status/696154766179749889

 

[Esther12]

It is funny having Coyne take on the role of the 'hard-line' critic. His position means that he can do and say things which would be totally counter-productive for patients to do (and it's possible Coyne sometimes goes a bit over the line too). I wonder how much he's deliberately working to show how mild a lot of patients' campaigning has been?

I think it's best for patients to go on trying to be cautious with the criticisms we make. Just because Coyne is being more aggressive doesn't mean that it's sensible for us to be so (I realise I will sometimes get pissed off by stuff, and post in anger and frustration: 'do as I say, not as I do').

Playing 'good cop' to Coyne's 'bad cop' is probably a useful place to be for patient advocates. I had just been saying how hard it was for the MEA to play the role of the insider when they're paired with AfME. Being paired with Coyne is surely much better for them.

 

[BurnA]

It is funny having Coyne take on the role of the 'hard-line' critic. His position means that he can do and say things which would be totally counter-productive for patients to do (and it's possible Coyne sometimes goes a bit over the line too). I wonder how much he's deliberately working to show how mild a lot of patients' campaigning has been?

I think it's best for patients to go on trying to be cautious with the criticisms we make. Just because Coyne is being more aggressive doesn't mean that it's sensible for us to be so (I realise I will sometimes get pissed off by stuff, and post in anger and frustration: 'do as I say, not as I do').

Playing 'good cop' to Coyne's 'bad cop' is probably a useful place to be for patient advocates. I had just been saying how hard it was for the MEA to play the role of the insider when they're paired with AfME. Being paired with Coyne is surely much better for them.

I disagree with this sentiment. I dont understand it. How can it be counterproductive for patients to speak out against the atrocity that is PACE.
Remember the only people who want us to stay silent are the people who benefit from our silence. Why is this so hard for people to see ?

Coyne needs all the support he can get from us now. There are people on Twitter (@neuroscine Micah Allen ) claiming that he is making a mockery of patients suffering and that he has no credibility. We can't let coyne fight our battles while we hide behind the sofa. One for all and all for one. It's time to stand up and raise out voices. If we miss this opportunity who knows how long it will be before the next one comes along.

We need to shout louder and louder.

 

[Mrs Sowester]

I don't think anyone's saying we should say nothing, just keep it proportionate and fight clean, no blows below the belt, nothing personal, nothing over emotional.

 

[jimells]

We can't let coyne fight our battles while we hide behind the sofa. One for all and all for one. It's time to stand up and raise out voices. If we miss this opportunity who knows how long it will be before the next one comes along.

Yes. If Rosa Parks tried to desegregate the Montgomery buses by herself, she would not have got very far. When one's enemy is weakening, that is the time to redouble the attack.

 

[Bob]

Coyne is big enough to look after himself. He's provoking, and embarking on, his own battles and he knows how to deal with the fall out. So I don't think we need to defend him. Sure, he likes our support, but supporting him doesn't mean we have to attack his opponents or make more enemies of our own. We don't really need more enemies. We need to make friends. We don't have to blindly follow James' strategy and I think we'd be misguided to do so. We need to remember that we are vulnerable. If James leaves then we are back to square one but with more enemies.

In the above posts, people have mentioned 'shouting' and 'attacking', but who are we shouting at and what precisely are we attacking and what is the strategy? Are we shouting at members of the public or the PACE researchers or everyone? And why are we shouting? What is the desired outcome?

We need to be strategic. Most of the public don't know what the issues are, and I've noticed that the messages from patients aren't getting through on Twitter. We're being ignored or misunderstood. Only James can get the message through. The only person who makes a difference is James. Without him, the situation would be exactly the same. It doesn't make any difference however loud we shout. We are ignored at best, and maligned at worst.

So, in my opinion, I think the best we can do is to calmly explain the situation to any member of the public who gets drawn into the discussions. At the moment I've seen intelligent people supporting the Nature article and not having the slightest insight into the reasons why we are objecting. People just don't understand the issues, and they think we're being unreasonable and idiotic when we protest. If we carefully explain things in full, then at least we haven't made an enemy and we might gain a friend. I haven't seen a patient blog explaining all the issues yet. We should have done that by now. That's the very minimum we should have done.

So I think we need clever strategy. I don't think that we should shout at those who challenge James especially if they honestly believe that James is harassing people. I think we need to gently educate them instead. James can fight his own battles, and then he can move on when he wants to. We can't move on.

But that's just my opinion, and I'm not pretending that I have a monopoly of wisdom (or any wisdom) about any of this.

 

[Esther12]

I disagree with this sentiment. I dont understand it. How can it be counterproductive for patients to speak out against the atrocity that is PACE.
Remember the only people who want us to stay silent are the people who benefit from our silence. Why is this so hard for people to see ?

Coyne needs all the support he can get from us now. There are people on Twitter (@neuroscine Micah Allen ) claiming that he is making a mockery of patients suffering and that he has no credibility. We can't let coyne fight our battles while we hide behind the sofa. One for all and all for one. It's time to stand up and raise out voices. If we miss this opportunity who knows how long it will be before the next one comes along.

We need to shout louder and louder.

I'm not saying "don't speak out", but I do think that it's still worth being aware that if we want to convince people that we have legitimate and serious concerns about PACE an angry patient posting that "PACE is an atrocity" is unlikely to be helpful. I think that it's better for people to try to express their concerns cautiously.

 

[BurnA]

I'm not saying "don't speak out", but I do think that it's still worth being aware that if we want to convince people that we have legitimate and serious concerns about PACE an angry patient posting that "PACE is an atrocity" is unlikely to be helpful. I think that it's better for people to try to express their concerns cautiously.

I'm gobsmacked.

 

[Mrs Sowester]

Isn't it as simple as thinking 'does this sound reasoned or rabid' before hitting send?

 

[BurnA]

Isn't it as simple as thinking 'does this sound reasoned or rabid' before hitting send?

Why is there so much caution here and why do some people keep reminding others to be polite and cautious?
Is it because Simon Wessley called us vexatious ?
Is it because supporters if PACE call us vexatious?
Since joining this discussion I have yet to see a single post I would describe as rabid or anything approaching rabid yet I see constant reminders from people to keep it clean ?
What is going on ?

 

[Mrs Sowester]

I'm gobsmacked.

I'm wondering if this might be cultural differences?
Ignore me if I'm speaking out of turn, but Americans are more comfortable with expressing emotion than Brits. We are raised in a culture of stiff upper lips where emotion is seen as weakness and to display it leaves us open to accusations of hysteria. Obama would have been mocked as weak for his tears over those horrible shootings if he'd been British - harsh, but true.
A display of emotion looses the argument here.
I guess we're just repressed!

 

[Mrs Sowester]

Why is there so much caution here and why do some people keep reminding others to be polite and cautious?
Is it because Simon Wessley called us vexatious ?
Is it because supporters if PACE call us vexatious?
Since joining this discussion I have yet to see a single post I would describe as rabid or anything approaching rabid yet I see constant reminders from people to keep it clean ?
What is going on ?

Don't know about anyone else, but I'm just worried we'll fall at the last hurdle if we get too fired up. Just don't want to loose the moral high ground.
And the rabid thing wasn't aimed at you, it was just an idea that's been brewing in my mind about the tone of twitter battles.

 

[Esther12]

Why is there so much caution here and why do some people keep reminding others to be polite and cautious?
Is it because Simon Wessley called us vexatious ?
Is it because supporters if PACE call us vexatious?
Since joining this discussion I have yet to see a single post I would describe as rabid or anything approaching rabid yet I see constant reminders from people to keep it clean ?
What is going on ?

For me, it is because I watch how other people respond to patient comments, and try to assess what style of comments seem lead to more people taking our concerns seriously. I'm not saying that I've worked out some wonderful plan that we should all follow, but just giving my impression of things.

I think it is quite likely that we're treated less fairly because of some of the prejudices which surround the condition. That's annoying, and not reason to pretend those prejudices are reasonable, but we do also need to try to progress from where we are.

 

[BurnA]

Don't know about anyone else, but I'm just worried we'll fall at the last hurdle if we get too fired up. Just don't want to loose the moral high ground.
And the rabid thing wasn't aimed at you, it was just an idea that's been brewing in my mind about the tone of twitter battles.

Don't worry about me I didn't take it personally at all and nothing I post is personal either.

I genuinely don't understand the attitude here sometimes.

As a patient population we have been denied recognition, denied funding and even have to put us with quack science and a PR campaign against us. And the main concern here is don't be angry, be polite ?

 

[Esther12]

And the main concern here is don't be angry, be polite ?

No, the main concern is 'how do we effectively fight against these problems?'

I don't care about hurting people's feelings! I want to hurt the right people's feelings in as effective a manner as possible, and prevent them from doing more to harm patients: that's going to need us to convince others that we are in the right.

 

[Mrs Sowester]

Don't worry about me I didn't take it personally at all and nothing I post is personal either.

I genuinely don't understand the attitude here sometimes.

As a patient population we have been denied recognition, denied funding and even have to put us with quack science and a PR campaign against us. And the main concern here is don't be angry, be polite ?

Yes. It really is as simple as that, polite argument trumps anger every time in the UK (unless you're on some awful reality tv show).
And I'm glad to hear you don't take difference of opinion personally, very refreshing here on PR isn't it?

 

[BurnA]

Yes. It really is as simple as that, polite argument trumps anger every time in the UK (unless you're on some awful reality tv show).
And I'm glad to hear you don't take difference of opinion personally, very refreshing here on PR isn't it?

Polite argument trumps anger when you are in a debate where logic and reason apply and the playing field is level.

Unfortunately that is not where we are.

 

[Bob]

As a patient population we have been denied recognition, denied funding and even have to put us with quack science and a PR campaign against us. And the main concern here is don't be angry, be polite ?

I think we're at cross-purposes. No one is saying don't be angry. We've got every right to be angry with a system that wilfully ignores our needs, or worse, and with individuals who corrupt the field to serve their own interests. I think we're discussing strategy when it comes to communicating with the public. In my own post, above, I was thinking about the effectiveness of recent Twitter interactions that I've seen; I wasn't thinking about the tone of argument in this thread. And I wasn't aiming my comments at anyone in this thread: I was just using some comments in this thread as a starting point for my thoughts.

If we shout angrily at members of the public who don't understand any of the issues, is that a good strategy? If we shout angrily at the PACE authors, will that make any difference? (Not that I'm accusing anyone of shouting angrily.) I'm asking who should we be shouting at, and why, and what is the desired outcome?

Personally, I think that shouting angrily at members of the pubic is counter-productive, and shouting at the PACE authors is meaningless, and shouting at journalists is counter-productive. I think we can raise awareness best by gently educating the public. There have been amazing blogs, articles, comments and discussions that have done this very well.

There's a place for venting anger, but I think there needs to be a strategy with regards to how our anger is channelled and where it is directed. And there are many other ways to advocate for change.

These comments aren't directed at anyone on this thread. I'm thinking about what I've seen on Twitter recently, where I've noticed that no one is listening to us. The more we protest, the more we get blocked and the more people think we're annoying trolls.

 

[adreno]

In regards to controversial issues, people listen to their peers or people whose opinion on other matters they already respect.

I don't think researchers or doctors will listen much to what patients say, politely formulated or not.