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

[Esther12]

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.

For a lot of people, I think that's true. But Jonathan Edwards got on board here. People convinced Tuller that they had reasonable concerns. Then Coyne. There are people willing to listen, debate and think about what's been told to them. A lot of really good and reasonable advocacy will achieve nothing, but it's about maximising our chances of getting lucky in different ways.

 

[Mrs Sowester]

We can't risk meeting their projections of us, if we engage in a vexatious angry manner we give them a stick to beat us.
Tactics wise why isn't the Guardian newspaper onto this one? They love a good scandal. Does anybody have friends in the press?

 

[adreno]

People have to come to a subject out of their own interest. Remember both Coyne and Tuller came to this out of their own interest; they were not coerced. 50 patients sending tweets to one researcher won't help, no matter how informative they are.

In general I believe letting other researchers talk for us is more effective. Also communicating through organizations. Journalists might be more realistic targets for patients than researchers.

If we as patients wants to engage with researchers, I think it a better strategy to bait them, than to "educate" them. People dislike being educated. Something like: "from looking at your research interests, I think you will find the PACE trial interesting, bla bla bla" is probably more enticing.

 

[Mrs Sowester]

People have to come to a subject out of their own interest. Remember both Coyne and Tuller came to this out of their own interest; they were not coerced. 50 patients sending tweets to one researcher won't help, no matter how informative they are.

In general I believe letting other researchers talk for us is more effective. Also communicating through organizations. Journalists might be more realistic targets for patients than researchers.

If we as patients wants to engage with researchers, I think it a better strategy to bait them, than to "educate" them. People dislike being educated. Something like: "from looking at your research interests, I think you will find the PACE trial interesting, bla bla bla" is probably more enticing.

I was almost thrown your use of the word bait there - on first reading I thought you meant bait aggressively (like bear or badger baiting) but then realised you meant bait as in a lure with something juicy on a hook... what a good idea!

 

[JayS]

Maybe I've been looking at this all wrong. Maybe there is something to the increasing concern that James Coyne is using poor tactics to make too many enemies, thereby making things worse for us.

After all, look at all the new enemies he's making for us. Look at the scores of angry scientists denouncing him. What good is it going to do to get all these virologists, immunologists, geneticists, epidemiologists, infectious disease specialists, endocrinologists, etc., all angry at him, and therefore, by extension, disgusted and repelled by us?

Oh, wait...

 

[soti]

I'd point out that any time that disrespect is conveyed in a conversation, the conversation becomes about that and really nothing else (I didn't make up this point, I can't remember where I read it though). I'd add that this is *only* true for people in situations of relative privilege. Until recently we didn't see black people, women, people with illnesses, etc. being *able* to make the conversation about the disrespect, and turning the disrespect on the people who generally have the privilege of being listened to.

Coyne is dishing out a bunch of disrespect (in addition to being a general nuisance---these two things can be distinguished). On this perspective, given the disrespect toward pwme, it's got a certain appropriateness to it.

So I get it. It leaves a very bad taste in my mouth, I have to say, because I'm generally not personally comfortable meeting disrespect with more disrespect, but I get it.

ETA: and I am not at all uncomfortable with the "nuisance" part of it!

 

[JayS]

Finding agreement with the sort of vitriol he's dishing out can be uncomfortable, sure. But for every thing I've seen him tweet that might've made me cringe for a moment, any negative feelings I might've had about that have washed away pretty quickly. Why?

Because it's remarkable to see their righteous indignation at how he's treating them and their colleagues, with words on Twitter...when, almost 100% certainly, not one of them have ever spared one thought for how we're treated by medical science. With the primary reason being the behavior of their own colleagues, or colleagues of sorts--people who work in somewhat-related fields.

Never a word about their behavior, the end result of their 'research,' the plight of the sick, disabled, dying, dead, most of whom almost certainly should not have been left to suffer as they did, as we do.

Oh, maybe one or two of them can dig up some scrap where they expressed some semblance of concern about the situation. Maybe. But 'harass' these esteemed scientists on Twitter? We can't have that! Conspiracy thory? We can't have that either!

What they didn't see was that for some time Coyne did actually try to engage them politely. I remember one example specifically from a few weeks ago. David Colquhoun ended up in some tangent of a debate Coyne was engaged in, and made a comment about what a mess ME/CFS is, in general. It was suggested he take a look at something that might have served to explain why it's such a mess--likely either one of Tuller's blogs, or Coyne's, on PACE. He just flat-out refused.

Oh, but that's okay--it's perfectly acceptable for them to refuse to even consider one piece of information. It's a mess; their minds are made up. Nothing's going to change that.

Well, if that's science, then I'm sorry, I can't muster up much sympathy for these mortally offended victims.

 

[adreno]

I think Coyne is genuinely pissed off about the way people are talking about us. He might go a little over the edge from time to time, but the main thing is that he is on the right side of this, he is fighting the good fight. If some people can't get over getting their egos bruised a bit in the process, perhaps they shouldn't be sticking their noses out quite so much.

 

[rosie26]

I'd point out that any time that disrespect is conveyed in a conversation, the conversation becomes about that and really nothing else (I didn't make up this point, I can't remember where I read it though). I'd add that this is *only* true for people in situations of relative privilege. Until recently we didn't see black people, women, people with illnesses, etc. being *able* to make the conversation about the disrespect, and turning the disrespect on the people who generally have the privilege of being listened to.

Coyne is dishing out a bunch of disrespect (in addition to being a general nuisance---these two things can be distinguished). On this perspective, given the disrespect toward pwme, it's got a certain appropriateness to it.

So I get it. It leaves a very bad taste in my mouth, I have to say, because I'm generally not personally comfortable meeting disrespect with more disrespect, but I get it.

ETA: and I am not at all uncomfortable with the "nuisance" part of it!

Me too, but it's a hard one.

 

[jimells]

I guess we're just repressed!

This is your big chance to liberate yourselves!

 

[jimells]

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).

After the end of the US Civil War the liberated slaves waiting patiently for 100 years and made little progress. When they stopped being polite, they started making progress. There has been too much civility and no progress in the past four decades. Eventually people might remember what it takes to move ahead.

 

[BurnA]

This is utter rubbish. And I agree, we will get what we deserve when we don't do anything about this.

I have lost faith each year that I have watched this community. There is so little willingness to be aggressive in demanding and pushing for change, so little awareness and understanding of the broad and varied factors that lock our disease in place and sentence us to lives of misery, and so little awareness and understanding of how to move forward. We do not have the capacity, knowledge, or expertise, in our organizations or in our advocates, to mount any movement that will make REAL change or even put us in a place to make change in the future.

We may not have made this situation, but we're all a part of its continuance and that's tragic and disgusting. When I first fell sick, I was willing to hunger strike to death to protest this disease, but, now, I'm deeply demoralized and spiritually broken and try each day to forget this clusterfuck as much as possible. This disease would succeed if patients' fire matched the scale of the problem and magnitude of suffering and we had leadership to channel that anger into productive causes. But there's too little fire and no good leaders.

I took the above post from another thread on another topic but it sums up my thoughts on this thread exactly. Thanks @mfairma

 

[GreyOwl]

Tactics wise why isn't the Guardian newspaper onto this one? They love a good scandal. Does anybody have friends in the press?

I get this tweet regularly:

https://twitter.com/i/web/status/695582855662059520

I'm not the right person to contact her to suggest this and give her a summary - I'm new to this and don't have a good understanding of the issues - is anyone else willing to do it? If not, I can work with others to make a proposal. I was thinking that just looking at P. Coyne's feed over the past month or two gives an idea of something big going on.

 

[BurnA]

I get this tweet regularly:

https://twitter.com/i/web/status/695582855662059520

I'm not the right person to contact her to suggest this and give her a summary - I'm new to this and don't have a good understanding of the issues - is anyone else willing to do it? If not, I can work with others to make a proposal. I was thinking that just looking at P. Coyne's feed over the past month or two gives an idea of something big going on.

@Keith Laws is on here sometimes, maybe he knows ?

 

[lansbergen]

There are people on Twitter (@neuroscine Micah Allen ) claiming that he is making a mockery of patients suffering and that he has no credibility.

What that Michah Allen person claims is ridiculous

 

[GreyOwl]

What that Michah Allen person claims is ridiculous

Yes it is.

 

[jimells]

I wouldn't know, he's blocked me....

You troublemaker. *We* know how to deal with *your* kind...

 

[Luther Blissett]

I will quote from John Ralston Saul's (an author and social critic)
The Doubter's Companion:
A Dictionary of Aggressive Common Sense

'POLITENESS A Mechansim of control distinguished by urbane, smooth, courteous, refined and other agreeable mannerisms of social intercourse.

[]But in a CORPORATIST society, the real class divisions are horizontal. Thousands of specialist groups -- public, private, interested, even disinterested -- are spread throughout society like inaccessible volcanoes sending up little puffs of smoke as their official communication with the outside world. This is corporatist politeness: the solutions, the answers, the truths all swathed in the expert DIALECT of the particular class. A second, more complex level of dialect is used inside the volcano as the equivalent of the old social "unsaid" with all its assumptions of rightfully held power.

An obsession with polite or correct public language is a sign that communication is in decline. It means that the process and exercise of power have replaced debate as a public value.

The citizen's job is to be rude -- to pierce the comfort of professional intercourse by boorish expressions of DOUBT. Politics, philosophy, writing, the arts -- none of these, and certainly not science and economics, can serve the common weal if they are swathed in politeness. In everything which affects public affairs, breeding is for fools. '

 

[Luther Blissett]

What i'm trying to illustrate, is that it does not matter in what language or manner you do it, you have already committed the ultimate social faux pas in the eyes of PACE supporters.

You have said 'no'. You have doubted. You have rebelled.

It doesn't matter whether you marched up to them in a mob shouting 'F#%K NO!', or sent a guilded envolope with the message, 'Frightfully sorry old chap, but no'. Saying 'no' is the offensive part to them.

 

[Esther12]

It doesn't matter whether you marched up to them in a mob shouting 'F#%K NO!', or sent a guilded envolope with the message, 'Frightfully sorry old chap, but no'. Saying 'no' is the offensive part to them.

Right, but to some disinterested observers it does matter. And it would be good if we could get them on-side.

I don't think anyone is saying that if we're nice enough to White then he'll stop screwing us over. Also, I think that a lot of British academia is a lost cause, at least until it looks like the consensus is shifting, and then they'll quietly shift too, while acting as if they were always pretty sceptical of the claims made about CBT/GET. But there are some people open to argument and looking at the evidence who could be needlessly put off if we present our concerns poorly.