Scientists trade insults over ME (JHP special issue)

[Esther12]

https://twitter.com/i/web/status/894494710768832512

https://twitter.com/i/web/status/894496159351226368

I really feel ill at ease with the way Coyne is handling the whole thing...
Far too agressive, often towards the wrong persons.

I agree.

I doubt that Whipple is likely to be upset by Coyne and I think Coyne is entitled to be up front. As far as I can see Whipple has quoted some abusive remarks from Coyne without checking with Coyne about the context. That seems to mean that Coyne did not leak the remarks. Whipple says Davey Smith did not leak the remarks. So who did? Whipple seems to be making this exactly cloak and dagger. And what does he mean by just a routine article and nothing cloak and dagger. Is quoting abusive remarks just a routine article? Isn't the source of the remarks going to be uppermost in readers' minds?

It seems to me that the two of them are just baiting each other because they both enjoy it. And it is good publicity. Moreover, I suspect that it will make onlookers associate the ME debate with serious academic disagreement rather than whinging patients. Whipple is not going to be put off. I don't think other journalists who are genuinely interested in the underlying debate are likely to be put off. The touchy feely brigade are not any help anyway. The ones who want to dig deeper are I think getting intrigued.

It's pretty routine for journalists to not identify their sources - I don't think that is Whipple making things cloak and dagger.

I don't think Whipple does enjoy this sort of thing. To me, it seems that he's a fairly gentle your lad, who is likely to see this sort of thing as 'abusive' (or on the edge of it).

Also, if Coyne was claiming GDS leaked those e-mails without having any evidence that this was the case, that's a bad thing. Making false claims like this is hardly going to encourage a journalist to trust you in the future.

edit: not directly replying to JE from here -

It looks like Whipple's tweets indicate that he wanted t cover the JHP special issue anyway (although it may not have got in the paper), but that the Coyne e-mails meant he felt that he could not present the JHP as an honest broker in this debate. While I think that the idea of an 'honest broker' is a bit misguided, I also think that tactically it could have been wise for the JHP to publish more weak pro-PACE pieces alongside the critical ones. The arguments are so on the anti-PACE side that the more we have them aired the better imo.

The trouble is that PACE is so rubbish, that 'honest brokers' rapidly become anti-PACE fanatics! Also, I think that there is a danger that because some of the problems with PACE and so clear and serious, this can lead to people assuming all criticism is valid, when there are also some weak and unfair criticisms made of PACE. When the Establishment is so clearly against us we need to try to stay as careful and rigorous as possible.

 

[TreePerson]

I've noted that people say Tom Whipple has been helpful. However I also note that he is extremely quick to play the victim and describe ME sufferers as militant or abusive. He repeats the line that journalists won't touch the story because we are all so awful. I suspect that he hides behind this because he does not really want to challenge the establishment. He says he is a reporter not an investigative journalist. He has also said that the PACE trial has not been discredited and that those who were involved and defend it are "honourable". I get the impression that he will only consider that it has been discredited when the mainstream and establishment are also of that view. In other words he's not going to stick his neck out particularly. Maybe his newspaper won't let him but I actually don't think he wants to. Personally I think he comes across as patronising and rather lacking in compassion.

 

[Esther12]

I've noted that people say Tom Whipple has been helpful. However I also note that he is extremely quick to play the victim and describe ME sufferers as militant or abusive.

I agree with a lot of that post, but also think that this reflects the mainstream culture of British journalism. You can either try to engage constuctively with it, or not. Most journalists seem more concerned by people expressing irritation about problems with their articles than the mistreatment of sick and disabled people. I get the impression that more morally driven, campaigning journalists often do not last long within the UK mainstream media.

 

[Jonathan Edwards]

I agree with a lot of that post, but also think that this reflects the mainstream culture of British journalism. You can either try to engage constuctively with it, or not. Most journalists seem more concerned by people expressing irritation about problems with their articles than the mistreatment of sick and disabled people. I get the impression that more morally driven, campaigning journalists often do not last long within the UK mainstream media.

@Esther12,
Have you ever been the subject of a journalist's piece? Journalists make friends with you then throw you in the shit. That is their job, and I have learnt to get on very well with them having learned that. If a journalist suggested to his or her colleagues that readers should show more sympathy and be less pugilistic the others would all choke on their Macallan 15 years old not knowing whether to laugh or cry. It's a bit like feeling sorry for Morecambe and Wise for getting the timing of a joke wrong. They don't really need it.

The journalists know where people like them to prance in the Morris Dance of life and they get on with it. If people want the journalists to prance a different way they need to make sure the accordionist has changed the tune. That is not to say that Morris Men cannot be inspired and original and passionate but you have to remember they can only dance to the tune being played.

The interesting thing is that social media have provided everyone with their own electronic accordion and hankies. We can play at being journalists in 100 characters or whatever it is. Coyne can turn the fan in the other direction. I think he has a certain style, does James. And I think the journalists will too.

There are some intelligent journalists who are genuinely interested in the patients' angle lurking in the background at the moment. The JHP circus is doing PWME no harm at all I would say. But they need the accordionist to strike up the right tune to get going. There are a remarkable number of two legs good four legs bad piggies sounding off just now, which is confusing the journalists as to which tune is actually being played. But they are getting the hang of it I think.

There used to be a chap called Goldacre who played a mean tune on the squeezebox but I wonder what happened to him? He's still out there somewhere it seems.

 

[Esther12]

@Esther12

I think that a lot of UK journalists are wetter than you imply. We would probably be better off with some of the nastier ones tbh. I should have been clear that I was talking about the 'mainstream culture of British journalism' as it relates to PACE and science though.

 

[NelliePledge]

We look on with admiration at the funding that HIV research and medication receives nowadays. But the campaign that was waged was not just made up of people going through the scientific establishment it was challenging political and aggressive. I personally would struggle to be as challenging as Coyne but I think it is great that he is prepared to get stuck in and shake things up.

 

[Starsister]

I think we forget that controversy sells. When something like this happens, journalists will more likely see dollar (or euros, or yen, or whatever ) signs in front of their eyes than be offended.

So true on the contraversy sells part! I'm noticing how long this thread has gone on and how I personally have gotten hooked into learning about it, something I previously had no clue about, and to my own ignorance, still need to look up the history of her Pace trial! These guys may be a packaged show, like Siskel and Ebert or any two celebrities set up to pit themselves against each other just for the media attention.

 

[Mithriel]

For almost forty years ME patients and organisations have been nice and polite and it has got us nowhere as the other side blatantly lies and manipulates. The JHP set its tone perfectly; they offered PACE apologists the chance to debate, but, as usual they ignored that (where they knew they didn't have a lef to stand on) and chose to use underhand methods, acting the victim and distorting the facts to give a false impression of the situation.

James Coyne is not an ME person as such. He has spent years fighting the bad science and publishing by mental health researchers. We are only involved in the sense that the PACE trial is one of the worst cases he has come across. When he writes about depression, say, actual patients are not part of the debate. My friends with MS don't know the names of the people researching their disease and only read about the latest findings in things like MS Association magazines.

We are a unique community because we have had to be our own doctors and experts. Luckily, we now have the backing of outsiders who are aware of how maligned we are and have taken up our cause. But there is another battle to be waged for the soul of science. When bad method and distorted results by interested parties become acceptable and the norm, five hundred years of progress will be lost. Trust is difficult to regain.

Mithriel

 

[TiredSam]

I've noted that people say Tom Whipple has been helpful. However I also note that he is extremely quick to play the victim and describe ME sufferers as militant or abusive. He repeats the line that journalists won't touch the story because we are all so awful. I suspect that he hides behind this because he does not really want to challenge the establishment. He says he is a reporter not an investigative journalist. He has also said that the PACE trial has not been discredited and that those who were involved and defend it are "honourable". I get the impression that he will only consider that it has been discredited when the mainstream and establishment are also of that view. In other words he's not going to stick his neck out particularly. Maybe his newspaper won't let him but I actually don't think he wants to. Personally I think he comes across as patronising and rather lacking in compassion.

Is it unreasonable to expect a science editor to be able to read and evaluate scientific papers? Too much to ask?

Because Mr Tom Whipple seems to be basing his opinion that the JHP is "not an honest broker" on the fact that James Coyne is a bit of a gobshite. As a science editor, can't he just read and evaluate the science, instead of using the lazy heuristic of judging the JHP PACE edition on whether one person connected with it has been rather rude?

Whipple could still have used the juicy email exchange to get attention at the beginning of the article and then gone on to write like a serious informative science editor. Wouldn't a serious journalist be able to see through such misdirection instead of perpetuating it by claiming that because of Coyne's outburst JHP can't be an honest broker?

 

[TiredSam]

There used to be a chap called Goldacre who played a mean tune on the squeezebox but I wonder what happened to him? He's still out there somewhere it seems.

Not sure Goldacre ever played a mean tune. He achieved some acclaim by introducing the squeezebox to a wider audience, playing simple melodies and vamping over 3 chords loudly, but as soon as a real piece of music is put in front of him he puts his squeezebox away for some reason.

Last I heard he was whoring what little talent he has left playing for pennies outside King's Cross public lavatories. Probably get a CBE at some point.

 

[Skycloud]

Is it unreasonable to expect a science editor to be able to read and evaluate scientific papers? Too much to ask?

Because Mr Tom Whipple seems to be basing his opinion that the JHP is "not an honest broker" on the fact that James Coyne is a bit of a gobshite. As a science editor, can't he just read and evaluate the science, instead of using the lazy heuristic of judging the JHP PACE edition on whether one person connected with it has been rather rude?

Whipple could still have used the juicy email exchange to get attention at the beginning of the article and then gone on to write like a serious informative science editor. Wouldn't a serious journalist be able to see through such misdirection instead of perpetuating it by claiming that because of Coyne's outburst JHP can't be an honest broker?

All spot on.

It's 'balance', but not as we know it! In this instance at least Mr Whipple is 'not an honest broker' either. An honest broker would evaluate the science.

 

[trishrhymes]

I'm not sure how realistic it is to expect a science journalist to dig deep into the science behind what they are reporting on, especially one who is writing 20 articles in a week.

On the basis of a 40 hour week, that gives 2 hours to read all the PACE papers, read all the articles in the JHP and assess the quality of each - and write the article. Given that he may not have any medical knowledge - I've just looked him up and he's a maths graduate - that's a tall order. In fact, it simply ain't gonna happen.

That's why we need people like David Tuller, who has had the time and inclination to dig deeper, to write the articles for us and get them published in the press.

Given that scientists like George Davey Smith and Steven Holgate who have been lurking in the wings of ME for years still haven't understood the problems with PACE, I think people are perhaps being a little unrealistic in their expectations of Mr Whipple.

 

[slysaint]

expectations of Mr Whipple.

Sounds like a Charles Dickens novel.

 

[Mithriel]

I'm not sure how realistic it is to expect a science journalist to dig deep into the science behind what they are reporting on, especially one who is writing 20 articles in a week.

Given that scientists like George Davey Smith and Steven Holgate who have been lurking in the wings of ME for years still haven't understood the problems with PACE, I think people are perhaps being a little unrealistic in their expectations of Mr Whipple.

I am sure they understand EXACTLY the problems with PACE. If they didn't they would not be able to spin things as well as they do.

It wouldn't take long to read even one of the papers.

Mithriel

 

[TiredSam]

I'm not sure how realistic it is to expect a science journalist to dig deep into the science behind what they are reporting on, especially one who is writing 20 articles in a week.

Well then I think I'll set myself up as a fashion journalist tomorrow, write 20 articles a week, and if I receive any complaints that my articles are mostly fluff with no depth or specialist knowledge, I'll just say I'm so busy writing articles that I can't be expected to look at anything in depth.

In fact I might go the whole hog, set myself up as a brain sugeon and operate on 20 patients a week. If there are any small mishaps due to lack of attention to detail the fact that I'm so busy should provide an adequate defence, and if any recently bereaved relatives get stroppy I can just ignore them because their stroppiness means they are not honest brokers and anything they or their family says is therefore unworthy of consideration.

Isn't it a question of how much pride you take in your work? If Mr Whipple calls himself a science editor he should be able to read scientific papers fairly quickly, evaluate and report on them. And if he doesn't want to bother being that good, he should just call himself Tom Whipple, Bloke Who Writes About Stuff.

 

[trishrhymes]

I agree, @TiredSam , I'm not defending the quality of Whipple's journalism, just facing the reality that newspapers employ people with no medical expertise to write this sort of superficial sensationalised stuff, so that's what they do. I've no idea how much he'd be paid for a short piece like this.

Gone are the days when newspapers employed journalists with real scientific expertise who could spend weeks digging into the story behind a scandal like PACE. Now they rely on the SMC and leaked e-mails to give them a 'story'. I agree it doesn't say much for journalistic integrity.

And then there's the question of if he did write what we think he should write, about the wrongs done to patients, the immense harm and injustice etc, would the paper publish it anyway?

 

[Tally]

I am always shocked how quick some patients are to jump to defense and look for every possible excuse to defend those that hurt us.

Is this like victims of abuse stuck in defending their abusers? Being grateful when the abuser is not hitting as hard?

I've been sick for 8 years, bedridden for almost 3, and every second of my lost life is precious to me. As I am sure it is for other sick 20 million people. Every sloppy article, every misreporting, every lie published is actively hurting me.

Why should we defend them, when they NEVER stopped hurting us?

 

[BurnA]

GDS speaks.

http://eiko-fried.com/the-tone-police-police-rude-dudes-and-how-to-be-social-on-social-media/

 

[user9876]

GDS speaks.

http://eiko-fried.com/the-tone-police-police-rude-dudes-and-how-to-be-social-on-social-media/

I don't understand why you say GDS speaks?

An excellent set of comments on the blog by "polite chap". I think it is interesting that in the open science and "tone" debates academic researchers are so into their own little world and arguments that they seem completely unaware of the big picture - that is that people are being harmed by bad science.

 

[TiredSam]

GDS speaks.

http://eiko-fried.com/the-tone-police-police-rude-dudes-and-how-to-be-social-on-social-media/

Where does GDS speak in that blog? Can't find him anywhere.