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

[TiredSam]

Yes, but the story of that woman has nothing to do with Wessely. not sure it's useful...

It's an easy thing for Sir Simon to respond to as a distraction from all the other points Coyne makes, so perhaps not the greatest strategic move but he's only human and he's doing a great job for us on the whole.

After all, it could have just been an ignorant bus driver.

 

[JayS]

From the beginning there were a couple of 'concern trolls' who took issue with Coyne's aggressiveness--even before he said what he said to the editor at the Spectator which for many was a bit over the line.

I don't care. Which is not to say that I don't care if someone had their feelings hurt, or that I don't care because it was taken as sexist (yes, that tweet bothered me quite a bit, seemed unnecessary, and was taken in the worst possible way without much distortion of meaning). What I do mean by that is that every once in awhile this guy, who is a human being after all, may say something that people don't agree with, perhaps even something that reasonable people may have a problem with.

This leaves us with options. We can disavow him, which may have already happened in the case of the concern trolls; we can accept that he may say things that we disagree with on occasion; or we can support him unconditionally.

I go with option 2; over the course of the past few months, and hundreds of tweets, he has, in conjunction with others, done a tremendous job, the likes of which were simply not possible before. Not because people didn't try, not because we don't have science on our side. We don't have politics on our side, and he's firmly planted in that world, and has more sway than just about anybody who's ever advocated for us.

I don't say that to denigrate the efforts of people like, say, Malcolm Hooper. But Hooper could easily be dismissed by the powers that be, so few have heard the obvious truth that he has pointed out. Coyne has more credibility with the world of science in general, and he has the advantage of being able to challenge PACE from a standpoint that happens to resonate quite loudly in the larger science community at this time. So, we are in uncharted waters, and that's a good thing.

I'm not sure I would've gone so far as this tweet, and some others, but I'll live with it. If that's the bad I have to take in order to benefit from the good, it sure beats where we've been for, well, forever. I don't have to like or agree with every single thing. Of course, nobody has to agree with me, either. That's just my perspective. What's the title of this thread? I agree with it wholeheartedly.

 

[Valentijn]

Think of the SMC as the attack dogs is maybe the idea

Wessely has also published statements suggesting that assistance (specifically in the form of carers) may "perpetuate" disability. It's not a far cry to suggest he'd be in favor of removing other disability assistance like bus passes. Or to metaphorically turn the dogs lose on patients who don't stay in line.

 

[Valentijn]

https://twitter.com/i/web/status/694931841019691009

 

[Esther12]

I'd just said this in the thread on the recent Tuller piece... I can see why people would want to goad them with steadily stronger criticism.

I think this is a slightly weaker Tuller piece overall (from very high standards), partly because it's dealing with such a political issue, where so much is unknown, and also... I think he's gotten pretty pissed off with the PACE people. They are unbelievably irritating, but it's really important not to let them get to you. They will try to ignore all the strong arguments and points, not giving them any publicity, and then as soon as a slip is made and a weak argument put forth, they can pounce and show how good they are in being willing to engage with their critics. I think that their failure to engage can mean that people feel a desire to make stronger and stronger criticisms in order to try to force them in to defending themselves. Whenever I look at Wessely's twitter feed it has him ignoring reasonable and important concerns from patients, and then searching for the weakest points to respond to.

 

[Cheshire]

Whenever I look at Wessely's twitter feed it has him ignoring reasonable and important concerns from patients, and then searching for the weakest points to respond to.

Totally agree. We should avoid giving him the opportunity to play the victim, a role that he knows too well.

 

[Roy S]

　
This is an interesting thread.
Illustrations of threats issued by Simon Wessely
　
http://forums.phoenixrising.me/inde...ons-of-threats-issued-by-simon-wessely.11631/
　
Do weasels weep crocodile tears?
　
　
　
　

 

[Yogi]

https://twitter.com/i/web/status/694931841019691009

Thanks @Valentijn for replying on twitter and emphasising the point.

It is difficult situation as @Esther12 said - they completely ignore any accurate and reasonable scientific points but they do respond to goading with these type of tweets (which are weaker).

It is a tricky strategy and has + and - benefits to it with what James Coyne is now doing.

Perhaps what Esther12 states should be made clear to them. Why are they so defensive and do they not respond?

There are strong parallels with ME civil rights with the tactics used against other oppressed minorities in their civil rights.

 

[Mrs Sowester]

I see us pwME as having been put in a double bind by the psychiatric stronghold - we have to be model patients, impeccably behaved, emotionally balanced to prove we are not mentally ill or vexatious, attention seekers or harassers!
If we complain in anyway we are labelled as troublemakers, but if we don't nothing changes.
Damned if we do, damned if we don't.
And we've grown so accustomed to our tiny patient lives (I mean patient in both senses of the word) that we're too scared to make a move that threatens our future and hope for recovery. And this is for a bloody good reason, once bitten twice shy!
Now we've found a powerful advocate from outside the ME community we've got to allow him to do it his way if we're going to get anywhere. Coyne is going to kick up the biggest stink he can, draw parallels that make us nervy (such as civil rights comparison), he'll draw criticism, he'll be accused of hubris, hyperbole and whatever they can throw at him - but he'll get our plight across. And the more noise he makes the more chance there is of the press and wider public becoming aware that there IS another side to the ME story.
We pwME have been metaphorically neutered - Coyne hasn't, let him fight for us, it looks like he'll enjoy it!

 

[adreno]

I've said it before, let Coyne be Coyne. He's a big boy, and wouldn't start something if he thought he couldn't handle it. Anyway, I believe he is just kicking up a shitstorm and trying to get focus on this issue in a provocative way. As he said himself, things pretty much can't get any worse for us, so there's nothing to lose here.

 

[Cheshire]

I've said it before, let Coyne be Coyne. He's a big boy, and wouldn't start something if he thought he couldn't handle it. Anyway, I believe he is just kicking up a shitstorm and trying to get focus on this issue in a provocative way. As he said himself, things pretty much can't get any worse for us, so there's nothing to lose here.

I hope you're right. Till now Wessely has played the game according to his own rules, and has been pretty succesful with it. Maybe Coyne is taking the hand.
What is sure is that the "be polite with the doctor" line didn't lead us anywhere close to a good management.

 

[Mrs Sowester]

I've said it before, let Coyne be Coyne. He's a big boy, and wouldn't start something if he thought he couldn't handle it. Anyway, I believe he is just kicking up a shitstorm and trying to get focus on this issue in a provocative way. As he said himself, things pretty much can't get any worse for us, so there's nothing to lose here.

Yep, and the bigger the shitstorm the better!
I loved the idea of him as leader of ME trolls, did anyone see the people posting pics of their 'troll caves' on FB? For anyone who missed it a few pwME posted pictures of themselves in their beds, with their meds and care equipment.
And it made me wish I could still draw, because I can just see a cartoon of Coyne followed by trolls in hospital beds or being pushed on wheelchairs, wearing dark glasses or slumped with exhaustion, crawling and limping...

 

[A.B.]

That Coyne is getting attention from Wessely and colleagues means he is doing something right. They have to take him seriously as opponent.

I think Coyne knows what he's doing. We need a shitstorm to increase awareness. In a scientific showndown, Coyne and Tuller and others will utterly destroy PACE.

PACe has already been destroyed by patients... the scientific argument has already been won... but if nobody is listening, does it make a difference?

The rules are already changing. Did anyone notice that now the excuse for not releasing PACE data is protecting patient rights? That's already progress.

Still, the ICO wants QMUL to release the data.

So White is lobbying to get universities exempt from FOIA. Which is outrageous for supporters of open data. Coyne is drawing attention to exactly this right now.

 

[Mrs Sowester]

I hope you're right. Till now Wessely has played the game according to his own rules, and has been pretty succesful with it. Maybe Coyne is taking the hand.
What is sure is that the "be polite with the doctor" line didn't lead us anywhere close to a good management.

You can't win if your opponent is writing the rules.

 

[chipmunk1]

https://twitter.com/i/web/status/694931841019691009

He should do some CBT and get over it.

 

[BurnA]

I see us pwME as having been put in a double bind by the psychiatric stronghold - we have to be model patients, impeccably behaved, emotionally balanced to prove we are not mentally ill or vexatious, attention seekers or harassers!
If we complain in anyway we are labelled as troublemakers, but if we don't nothing changes.
Damned if we do, damned if we don't.
And we've grown so accustomed to our tiny patient lives (I mean patient in both senses of the word) that we're too scared to make a move that threatens our future and hope for recovery. And this is for a bloody good reason, once bitten twice shy!
Now we've found a powerful advocate from outside the ME community we've got to allow him to do it his way if we're going to get anywhere. Coyne is going to kick up the biggest stink he can, draw parallels that make us nervy (such as civil rights comparison), he'll draw criticism, he'll be accused of hubris, hyperbole and whatever they can throw at him - but he'll get our plight across. And the more noise he makes the more chance there is of the press and wider public becoming aware that there IS another side to the ME story.
We pwME have been metaphorically neutered - Coyne hasn't, let him fight for us, it looks like he'll enjoy it!

Hi Mrs sowester, please don't worry about being labelled a trouble maker - we have every right to be vexatious. The people who label us harassers are the people who benefit from our silence. This is important to realise.
They use slander when we ask questions in an attempt to silence us so they don't have to answer. We need to raise our voices !

 

[adreno]

I loved the idea of him as leader of ME trolls

That's just the thing, he isn't doing any of the things they are accusing him of. He isn't leading any trolls or orchestrating any campaigns. He is just doing his own thing. And I like it.

 

[Chrisb]

You can't win if your opponent is writing the rules.

You can if you decide to play by different rules.

All this talk of trolls reminds me of the Three Billy Goats Gruff. Perhaps James Coyne is the third Billy Goat.

 

[Mrs Sowester]

That's just the thing, he isn't doing any of the things they are accusing him of. He isn't leading any trolls or orchestrating any campaigns. He is just doing his own thing. And I like it.

Absolutely, the very idea of us being capable of being anything as able bodied as trolls is hilarious. I personally see myself as more zombie like, but with nicer pyjamas and much less bitey

 

[Mrs Sowester]

Hi Mrs sowester, please don't worry about being labelled a trouble maker - we have every right to be vexatious. The people who label us harassers are the people who benefit from our silence. This is important to realise.
They use slander when we ask questions in an attempt to silence us so they don't have to answer. We need to raise our voices !

I agree 100%