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

[WillowJ]

The thing is, journalism school is supposed to teach you not to simply trust information you are given but to look for other perspectives. Even including if the information is from well-regarded sources.

 

[SOC]

They get sent a press release saying 'Oxford University study finds that graded exercise therapy and CBT ease symptoms of CFS' (or whatever the actual wording was.) The science writer, probably, has had no personal encounter with ME - why would they doubt what appears to be a landmark study, and by such a well respected institution?

Because no good journalist is a one-source writer. Any writer, even a non-professional, knows you don't use only one source and take whatever it says as the absolute truth. That's regurgitation, not writing.

The sad fact is, that we as patients can't argue with the name of Oxford University (always mentioned even though two other universities are involved.)

Why the heck not? Just because they're (ooh, I'm so honored to even be saying the name ) Oxford, doesn't make them perfect and irrefutable. Or is that too American of me? Americans don't consider Harvard or Yale or Stanford publications to be inarguable. It's about the quality of the person or the argument, not the title or the name.

What's with all this deference to self-proclaimed authorities?

 

[aimossy]

I wonder if James Coyne is just extremely angry now and becoming more educated in what patients have to cope with. I think this is a sign of true compassion. So pleased to have him in the ring!

 

[harveythecat]

No, they didn't do their jobs properly. The Telegraph article was completely inexcusable and sickened me and made me burst into tears, but I don't think there is a media conspiracy. Like I say, we need to understand how the media works in order to best use it to our advantage.

We need to consider what 'news' is and (sadly we must be cynical) - what newspapers think is a 'story'. What seems to be a medical breakthrough is a story (i.e. the PACE trial.)The IOM releasing a huge, complicated document about a disease which, unfortunately, can't explain its cause, is not. We need an angle. Such angles could be: human right's abuses, people being sectioned, people dying because of neglect/not getting benefits, the financial burden (this list is making me feel sick), personal stories of loss, gross incompetence of doctors/hospitals, also (again this is awful) celebrities who have it. And of course, REAL medical breakthroughs. Potentially - the disease with the lower quality of life than x, y and z, which affects x huge amount of people is a national scandal - type thing.

 

[WillowJ]

We need to consider what 'news' is and (sadly we must be cynical) - what newspapers think is a 'story'.

Unfortunately, too true.

 

[harveythecat]

Because no good journalist is a one-source writer. Any writer, even a non-professional, knows you don't use only one source and take whatever it says as the absolute truth. That's regurgitation, not writing.

Why the heck not? Just because they're (ooh, I'm so honored to even be saying the name ) Oxford, doesn't make them perfect and irrefutable. Or is that too American of me? Americans don't consider Harvard or Yale or Stanford publications to be inarguable. It's about the quality of the person or the argument, not the title or the name.

What's with all this deference to self-proclaimed authorities?

I completely agree. But journalists do defer to such authority most of the time, disastrously in our case.

 

[JayS]

I don't like calling 'conspiracy.' But the media & its relationship with the SMC is awfully fishy and has been for years--and the history of some of those people (Revolutionary Communist Party, Living Marxism, Spiked!) is something that someone's going to take a nice, long look at, one of these days, I suspect.

 

[TiredSam]

"My suspicion, based upon the evidence I have seen and wrote about in my book "Whining Selfish Monkeys" ..."



How can anyone take this man seriously? That sounds like a comedy routine.

Yeah, I know some people do, but they're hardly worth arguing with. Some people believe professional wrestling is real wrestling, too. Rational argument is not going to change that kind of mind.

He can't even get the name of his own book right, it's "Selfish, Whining Monkeys". According to a 1-star review on amazon, he writes about ME in the book.

 

[Sasha]

@Jonathan Edwards - I sympathise with your problems registering to these various accounts - but lately I got myself a Disqus account and it leaves me permanently logged in so that I can comment on loads of individual news sites now without having to bother to register or log in automatically. I think the same applies if you have various other accounts such as Facebook, Googleplus and so on.

Your comments are always so valuable and because of who you are, you have infinitely more authority than not only the journalist but also the whole PACE team put together.

We need your comments out there!

 

[Valentijn]

The thing is, journalism school is supposed to teach you not to simply trust information you are given but to look for other perspectives. Even including if the information is from well-regarded sources.

To be fair, the PACE followup is (deliberately) pretty confusing, even if familiar with the other PACE papers. If someone isn't reading medical research papers on a regular basis, they wouldn't be able to make anything of it.

I think nearly all of the blame regarding this 1 article goes to the authors who fraudulently spun the results, Oxford for happily propagating the spin when they should have the skills needed to understand the article, and the so-called "Science" Media Center for more of the same.

Though the author did get rather snippity at first when called out on the errors, which is not a productive or professional reaction.

 

[Valentijn]

I have to agree with @SOC - Disqus is the way to go. Most sites use it, though the UK seems to be a bit of an exception, where the bigger news sites have their own systems in place.

 

[WillowJ]

To be fair, the PACE followup is (deliberately) pretty confusing, even if familiar with the other PACE papers. If someone isn't reading medical research papers on a regular basis, they wouldn't be able to make anything of it.

True, but that doesn't excuse them for not asking: Who are the other experts who study this disease and what do they have to say? Who can we find to represent the patients here?

 

[sarah darwins]

I wrote the second Telegraph piece and so obviously spoke with a reporter at the Telegraph quite a lot. I think it's important, if we want to understand exactly how the media works and how these terrible headlines/articles get produced, to understand it from the science reporter's point of view. They get sent a press release saying 'Oxford University study finds that graded exercise therapy and CBT ease symptoms of CFS' (or whatever the actual wording was.) The science writer, probably, has had no personal encounter with ME - why would they doubt what appears to be a landmark study, and by such a well respected institution? How could they possibly understand all the nuance behind the 'controversy'? I can see how such an appalling headline was produced - it took the reporter I was working with a long time to finally really understand the difference between GET and exercise, and 'positive thinking' and CBT - and he is someone I know personally and who is 'on my side' so to speak. And then of course, I was asking in my piece, to go several stages 'further' than that and say that the whole study was rubbish. The Telegraph's initial story was awful and irresponsible, but I can almost understand how a naive reporter could have come to such conclusions based on the press statement. The sad fact is, that we as patients can't argue with the name of Oxford University (always mentioned even though two other universities are involved.) I'm fairly sure, I couldn't have argued my case were it not for the fact that I sent quotes from a similarly venerated institution - the IOM.

I was aware that you wrote it, harveythecat, and I thought it was an excellent piece. But that doesn't change the fundamental problem — that the British press are incredibly lazy when it comes to background research, tending to flock to the same sources over and over for expert opinion (on most subjects, not just ME), a tendency much encouraged by the existence of the Science Media Centre.

It's nothing personal. I've just started to wonder if there is any point publishing patients' stories, whether the juxtaposing of them with psych-based articles presented as "What the science says" may be counterproductive in reinforcing the common idea that ME sufferers are nice but deluded individuals railing at unpalatable scientific 'truths'.

Newspapers in this country have been essentially running the same handful of ME stories for decades now. They're great stories, given how the press here thinks (I'm a former journalist): they're endlessly recyclable; they don't require much research; they're absolutely guaranteed to provoke controversy.

One day the press here will do a u-turn on ME, probably when researchers in the US or Norway (or both) come up with indisputable evidence that somatization theories are horse manure. And it will be a nauseating spectacle — "The Sun / Telegraph / Mail can reveal how key evidence was manipulated etc etc", as though they played no part in it. Much as I want that day to come, I'll probably lock the door, disconnect the internet and cover my head with a pillow for about six months.

 

[TiredSam]

It's nothing personal. I've just started to wonder if there is any point publishing patients' stories, whether the juxtaposing of them with psych-based articles presented as "What the science says" may be counterproductive in reinforcing the common idea that ME sufferers are nice but deluded individuals railing at unpalatable scientific 'truths'.

What I really liked about harveythecat's article was that it was a personal story, which I think are the most effective for getting the attention of a general audience, with it's own "what the science says" box, which said what the real science says. Perfect combination I thought.

 

[sarah darwins]

What I really liked about harveythecat's article was that it was a personal story, which I think are the most effective for getting the attention of a general audience, with it's own "what the science says" box, which said what the real science says. Perfect combination I thought.

We'll have agree to differ (about how these things are perceived, not about the article) but I'm just old and jaded. Ignore me

 

[TiredSam]

We'll have agree to differ (about how these things are perceived, not about the article) but I'm just old and jaded. Ignore me

To be honest I'm middle-aged, jaded and a little pessemistic, but the inspiring efforts of @Sasha and the rest and the fact that they are bearing some fruit is making me feel a little younger and more hopeful as I watch in amazement and admiration.

 

[TiredSam]

rodliddle•3 hours ago
No,Isabel, the game was up a long time ago.

This is basically an admission that Rod Liddle made up his mind a long time ago, and has been too lazy to reinvestigate or rethink the matter since, despite the enormous number of developments in the field since he came to the wrong conclusion.

 

[sarah darwins]

To be honest I'm middle-aged, jaded and a little pessemistic, but the inspiring efforts of @Sasha and the rest and the fact that they are bearing some fruit is making me feel a little younger and more hopeful as I watch in amazement and admiration.

In fairness to me (I always aim for that), I'm middle-aged, too. Last week just made me feel old

You're absolutely right, Sam, and I definitely wasn't intending to discourage anyone from trying. I suppose what I'm saying is that Priority 1 should be to try to get the media to carry some authoritative opinions other than the ones they're always spoon-fed.

 

[Jonathan Edwards]

I like the idea of you writing a regular article, if you're up for that.

I am thinking that maybe I should have a go at a carefully written article, rather than trying to fire off responses and maybe getting the tone wrong.

It seems that we need something very measured and unhysterical. Tom seems to have scored some points on that.

I also think we want something very simple, because the reason why PACE should not be used as an evidence base for guidelines is very simple. It is a controlled trial that has not been designed to minimum standards of a controlled trial. It would be useful to have some input from clinical pharmacologists and I am thinking about possible options.

My problem is in finding it difficult to gauge how to structure a text for this purpose and where to send it. The Guardian has the reputation for being the free-thinking underdog's paper but it also has a bad health coverage record and is dismissed by 70% of opinion as loony left.

If a member here with some experience of newspaper editors would like to join forces on a piece - possibly even as a dialogue - I would be up for that.

 

[A.B.]

I also think we want something very simple, because the reason why PACE should not be used as an evidence base for guidelines is very simple.

Focus on the basic problem is good, but I think the other problems should also be mentioned and acknowleged. We don't want to downplay all the problems.