Rod's back! Coverage in The Spectator, 2nd November

[alex3619]

So, a narcissist will perceive any criticism as a personal attack. Does that sound like anyone we know?

I think its mostly much more calculating than that. This is medicine and science by politics, not evidence and reason.

 

[alex3619]

I prefer moron or a-hole over bitch. It's gender neutral.

I prefer talking about what they did than how they are. So "irrational claims" and "irresponsible claims" and so on. You can always be argued to be over the top, or abusive, if you make personal comments. Commenting on claims or actions at least has the claim or action to use as evidence. Claims of abusive reply are then easier to fend off, not that they wont be tried.

 

[SOC]

I prefer talking about what they did than how they are.

You mean like saying someone made a "bitch comment" instead of calling them a bitch?

 

[Valentijn]

He didn't call women bitches, he said one woman made a bitch comment.

Add a "y" and it's a pretty obvious and innocent adjective ... and Twitter rather forces abbreviations. Anyhow, he clearly used it as an adjective, not as a noun, yet the writer is choosing to go the melodrama route and claim he called her a bitch.

Frankly it seems like another non-issue.

 

[Sidereal]

Also Coyne has dyslexia and makes many typos on twitter. It is entirely possible he meant to write bitchy comment since bitch comment is ungrammatical.

 

[Sidereal]

Such as... it ain't gonna happen unless we grovel and let them define who (they want the world to think) we are?

I'm beginning to think that cause is lost until the rest of the world sorts out the ME problem and the UK medical system and media are forced by worldwide public opinion to stop being nasty hateful bigots about ME. I'm not sure we patients have the power to force change in that arena. Better to focus our energy where something can be done with less effort and more effect.

Perhaps if all the energy spent in the past week fighting the UK media and medical establishment had been spent pushing the positive things happening in the US (Tuller, Coyne, the NIH announcement, the IOM report), the total end result would be more beneficial overall.

I think they're wasting our time and energy, and deflecting us from the important task of making real progress. And I think they know that full well.

Like x100

 

[adreno]

I see him taking heat for this on twitter and just I think we should be focusing our critical attention on our opponents not the guy who is trying to help us. Every minute he wastes on the fallout from that ill-advised tweet is a minute wasted not writing against PACE.

I agree. I'm not active on twatter, but I suggest patients focus their energy on the people calling us delusional CFS trolls.

And make no excuses for Coyne. He can handle himself.

 

[Marco]

Maybe a set of key ideas with references that people can use as a cheat sheet?

I'm not sure about that. Having a raft of comments all quoting the same references would look a little odd and frankly I doubt any of the usual punters would bother reading them.

Fundamentally we need to ensure that we play the ball and not the player. Criticising journalists, even if justified, just puts them on the defensive and reinforces their adherence to their side of the debate. Staying polite, civil and reasoned is much more persuasive.

This latest paper has been an absolute gift as it's clear as day that the therapies failed to show any superiority over standard care. I'm afraid previous criticisms of PACE were necessarily more complicated and just caused eyes to glaze over.

Something like : 'Interesting perspective Ron although you do realise that the study you referred to clearly shows that these therapies have no lasting value. If you really propose that ME/CFS is a psychological illness then show us the evidence and we can talk about it'.

There were some excellent responses from some PR members that helped a lot in defusing the adversarial tone of the discussion. Perhaps we need to set up a PR PR unit. We could also call on 'expert commentary'.

 

[thegodofpleasure]

This is from her PPS on the blog:

I’m very happy to add these points, and to engage in a debate that helps those with ME/CFS get a better hearing. I’m not happy to engage with people who call me a ‘bitch’,

Resorting to this type of language is not helpful and is counter-productive

I hope that Isabel will decide to return to this subject - I cannot find any other well known journalist at the moment who is willing to criticise the Daily Telegraph and ask Rod Liddle to calm down…...

I don't agree with your very charitable view of Isabel Hardman.

Like so many other journalists have done in the past, she did a "hit and run" piece and then threw a hissy fit when we disagreed with her. That's not proper journalism - it's just a unilateral statement of opinion.

As for James Coyne's comment, he wasn't calling her a bitch at all. Yes, it was an unfortunate turn of phrase, but it only became controversial because Ms Hardman was all too quick to take offence (and a failure on her part to recognise its native meaning). In my view she behaved like a spoilt child.

In your role at the MEA, I can understand your desire to get "friendly" journalists on board, but I would suggest that Ms Hardman provides a good example of why it might be wise not to be over-eager.

 

[thegodofpleasure]

Let me see if I understand The Isabel Situation:

Isabel writes an article that's an equivalent of the following,
"My colleague wrote a nasty piece saying colored people are dirty, smelly criminals. I disagree. I even have a colored friend. I think colored people need help. There's a policy that is very helpful and should be pursued further. It's called slavery. Slavery works. We know it works because we can see all the pictures and books and films and accounts written by helpful journalists like me in which the colored people are cheerfully singing in the fields and doting on their master's children. This policy gives colored people a chance to be happy, with productive work and a roof over their heads. I'm sure my friend and other colored people would love to be able to have useful work and a home that would get them off welfare and out of public housing. These people are not smelly criminals, they just need help. The problem is that sometimes colored people get uppity and start complaining too much about the treatment they get. That doesn't help the situation. People don't want to help uppity ungrateful colored people. Colored people need to be gentler, quieter, and less scary if they want people to support their cause."

Not surprisingly, a very few people wrote back the equivalent of, "Isabel, you're an idiot. You know nothing about black people, slavery, or the issues facing black people today. Why don't you get educated before you write dangerous nonsense about topics you don't understand at all."

Isabel comes back with
"You People are SO ungrateful! Good luck finding sympathetic journalists willing to write about You People. If You People can't be properly appreciative of our efforts I don't see any reason to stick up for you."

Isabel, I'm sorry to have to be the one to tell you this, but your panties are showing.

I'm in the "Isabel, you're an idiot" camp.

A brilliant analogy. It made me smile. Thank you.

 

[Sidereal]

This latest paper has been an absolute gift as it's clear as day that the therapies failed to show any superiority over standard care. I'm afraid previous criticisms of PACE were necessarily more complicated and just caused eyes to glaze over.

I agree. They really scored an own goal with this latest paper because it's really easy to criticise it due to the sheer shameless egregiousness of reported null finding being spun as significant. The 2011 papers are much much more difficult to criticise; understanding what is wrong with those papers requires having some interest in and understanding of trial design and statistics.

 

[BurnA]

Nothing wrong with being rude from time to time. Being a pushover generally gets you nowhere in life. I am sick to death of political correctness and hypersensitivity. The female journalist in question wrote a poor quality article and got bitch-slapped for it on the internet. That's life.

In my opinion Coyne has possibly done more to raise awareness of the unacceptable BPS research & reporting on ME/CFS in 5 days than years of us patients nicely and politely tweeting to each other and posting here in our little echo chamber. I don't think we should alienate him over one un-PC tweet.

I am all for the fight and we shouldn't worry about mildly offensive tweets.
We need more Coynes on our side and we should recruit them actively.That's the only way. We need to make noise, we need to make people uncomfortable with the truth.

For now that's the best path forward.
Remember in a few years this will be hopefully moot because we will have rtx approved and people will laugh at PACE.

So now all we can do is tell the truth. Then nobody can claim ignorance in the future.

 

[Ecoclimber]

For what it's worth, I strongly believe that at this time, we need all the resources to come to ouir defense and to rally around those fighting against the BPS psych model. I believe that Coyne, our white knight, has come to our defense unexpectedly and is pretty much out there alone fighting our battles.

This is a war and other ME/CFS researchers, scientist and media experts who are knowledgeable in this field of study, need to enter the social media fray to take on the BPS psychobabblists and their flawed theories. It's all hands on deck time. From my understanding, both sides have appologize and have moved the discussion forward.

He has already been threaten to have this matter taken before his employer to muzzle him. It is illegal to threaten someone's employment over a person's right and duty to speak out and defend against bad science. But like I said, the ME/CFS community is fortunate that we have an influential and unexpected allly come to our aid to defend us against bad science.

He should not be out there alone taking on the BPS researchers because he is staking his reputation and his career defending us. He needs our support & appreciation! We need other ME/CFS experts to enter the social media dialog with @WesselyS and @TheLancetPsych and to rally around this issue at #PACEtrial seriously. Having been on the firing line with the xmrv debacle, I know what it's like. @viggster,@charles shepherd @Tom Kindlon @Jonathan Edwards @alex3619
https://mobile.twitter.com/CoyneoftheRealm/status/661905754467643392?p=p
https://mobile.twitter.com/CoyneoftheRealm/status/661905017830445056?p=p
https://mobile.twitter.com/davidtuller1/status/661920927916036096?p=p

James C.Coyne ‏@CoyneoftheRealm 4h4 hours ago
.@RichardCann76 @Mental_Elf @WesselyS Lots understand the relentless Oxford/PACE publicity machine, others are beginning to grasp


Further documentation of this is very much needed.
James C.Coyne added,

Anton Mayer @MECFSquestions
@CoyneoftheRealm PACE trial SMC arm (specialist medical care) may have actually been a no treatment arm according to participant reports.
4 retweets 4 likes

davidtuller ‏@davidtuller1 Nov 3
My work on PACE indefensible flaws has just been cited in the literature!--Rapid comment to BMJ: http://www.bmj.com/content/351/bmj.h5771/rapid-responses …

 

[Esther12]

A bit wary of white knights, and I think it's good to keep applying pressure in lots of ways, but taking PACE down would be a real win for us, and for patients affected by poor research with all manner of conditions. A real priority for advocates and patient groups.

 

[Valentijn]

He has already been threaten to have this matter taken before his employer to muzzle him.

That was in relation to a different debate Not anything to do with ME/CFS.

 

[Ecoclimber]

That was in relation to a different debate Not anything to do with ME/CFS.

Your information is incorrect, please correct!

.@BPSOfficial @peterkinderman refused debate and threatened my universities w/ legal action if they did not muzzle me.

https://twitter.com/coyneoftherealm/status/660196634521812992

 

[Ecoclimber]

A bit wary of white knights, and I think it's good to keep applying pressure in lots of ways, but taking PACE down would be a real win for us, and for patients affected by poor research with all manner of conditions. A real priority for advocates and patient groups.

Exactly the opposite. more White Knights are needed, the rest of your statement doesn't make sense using the conjunction 'but'

Simon Wessely ‏@WesselyS
@dsheehan96 @MEAssociation No. . You find a genuine quote from me saying "ME is all in the mind" and i owe you a bottle of wine

 

[Scarecrow]

Your information is incorrect, please correct!

.@BPSOfficial @peterkinderman refused debate and threatened my universities w/ legal action if they did not muzzle me.

https://twitter.com/coyneoftherealm/status/660196634521812992

AFAIK it refers to this blog from a few months ago.
http://blogs.plos.org/mindthebrain/...psychiatric-diagnosis-godwins-rule-confirmed/

 

[Valentijn]

Your information is incorrect, please correct!

.@BPSOfficial @peterkinderman refused debate and threatened my universities w/ legal action if they did not muzzle me.

Yeah, Kinderman is a different fight Coyne's been having Different debate too. Coyne's not an ME/CFS guy, and most certainly not exclusively, and he's attacking other aspects of bad psych research.

 

[Esther12]

Your information is incorrect, please correct!

.@BPSOfficial @peterkinderman refused debate and threatened my universities w/ legal action if they did not muzzle me.

https://twitter.com/coyneoftherealm/status/660196634521812992

That was related to CBT for psychosis debate. Don't think Kinderman is anything to do with CFS.

Exactly the opposite. more White Knights are needed, the rest of your statement doesn't make sense using the conjunction 'but'

Simon Wessely ‏@WesselyS
@dsheehan96 @MEAssociation No. . You find a genuine quote from me saying "ME is all in the mind" and i owe you a bottle of wine

I'm wary of making dramatic changes re tactics because of current PACE buzz, but agree that it's a high priority. Lots of people already working on it.

re: Wessely and 'all in the mind': I started a thread on that ages back: http://forums.phoenixrising.me/index.php?threads/simon-wessely-and-all-in-the-mind.13979/