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Good piece by Jerome Burne (independent journalist) on PACE Trial (September 26)

Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
Dolphin said:
I think one possible issue is that the pieces the journalists publish are often criticised by people in the ME community. Journalists don't necessarily like their work being criticised especially if they are not opinion-based journalist. Journalists can also often be freelance or not in secure positions.

Something to keep in mind I think. Things like "ME also known as chronic fatigue syndrome" for example may not be worth strong criticism.

Journalists might feel that no matter how hard they try, they will be criticised
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If they know this is the case going in (that there is sometimes criticism) then why do they not come to community to get a different POV. After all they routinely liberally quote from the BPS handbook. Maybe once upon a time they only knew there was one side but not now.

Something as simple as: ME also known as chronic fatigue syndrome would go down better if there was a sentence or two as to why PwME have so much trouble with the (everybody gets tired, just go for a run) fatigue issue. Use the word trivialising.

Yes, it can be tough doing a story and I expect it's not for everyone but how hard is it to incorporate a PwME POV or have us direct them to appropriate (checkable) facts and research or even countering opinions from well respected medics (since BPS spew endless opinions not supported by fact).

To me the big fight would be getting it past an editor but lots of journo's pitch stories and fight to have them heard.

And there is the issue of balance. I don't think BPS needs more air/print time--it's had plenty. Balance at this point would be to air/print our POV straight up. And while there is no one universally agreed position that represents PwME there is still plenty that most of us would agree on.
 
D

Dolphin

Senior Member
Messages
17,567
Snowdrop said:
If they know this is the case going in (that there is sometimes criticism) then why do they not come to community to get a different POV. After all they routinely liberally quote from the BPS handbook. Maybe once upon a time they only knew there was one side but not now.

Something as simple as: ME also known as chronic fatigue syndrome would go down better if there was a sentence or two as to why PwME have so much trouble with the (everybody gets tired, just go for a run) fatigue issue. Use the word trivialising.

Yes, it can be tough doing a story and I expect it's not for everyone but how hard is it to incorporate a PwME POV or have us direct them to appropriate (checkable) facts and research or even countering opinions from well respected medics (since BPS spew endless opinions not supported by fact).

To me the big fight would be getting it past an editor but lots of journo's pitch stories and fight to have them heard.

And there is the issue of balance. I don't think BPS needs more air/print time--it's had plenty. Balance at this point would be to air/print our POV straight up. And while there is no one universally agreed position that represents PwME there is still plenty that most of us would agree on.
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I've no problem with unbalanced articles being criticised.
But sometimes balanced articles get as much if not more criticism as unbalanced ones.
Indeed sympathetic articles (e.g. patients telling their story) not infrequently get quite a bit of criticism.

One thing I've learned over my life is to try to praise not just criticise if some praise is justified.

So I'd suggest if criticising, also try to acknowledge reasonable bits.
 
Research 1st

Research 1st

Severe ME, POTS & MCAS.
Messages
768
worldbackwards said:
Interesting comment from the author on trying to get a similar story published in the popular press:
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I agree it's very 'interesting' if this is what was said:

''Thanks I’m working on it but not hugely optimistic – CFS is viewed in mainstream press as one of those impossible areas- going in is intervening in a civil war – you probably can’t broker a deal and it is more trouble than it is worth''.
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Because that if that is what a journalist really thinks and wasn't coerced to say by their boss who has links to the SMC, they should give up their job and take a Phd in cowardice.

1) They claim mainstream press thinks CFS is impossible. A BS reason. (Mainstream press also hated gays and blacks until they were forced not to by anti-discrimination laws).

2) They claim 'intervening' (by printing the truth) is tantamount to civil war, again absurd notion used.

By not publishing the truth about a minority group, such as CFS, all that happens is the press continue publishing misinformation and disinformation about them and no one is ever challenged.

Obviously morals don't affect most journalists, which is why most of them like to hide behind a keyboard, rather than have the balls to go meet someone like Whitney Dafoe and have a wake up call to reality.

That would be 'too much' to print of course, the actual reality of the lived experiences of being diagnosed with ME CFS and by revealing the sick reality of medical neglect this would upset too many people who like to engage in medical apartheid, based on null effect outcomes of therapy - psychiatry for profit (CBT GET).

Ohh well, maybe there's another country with less cowards, such as America, who does have journalists with balls, usually the women actually.
 
Large Donner

Large Donner

Senior Member
Messages
866
I think one of the main issues here is not that of any individual journalist barring "journalists" like Rod Liddle, but more that journalism has become a kind of politically correct "impartiality" nonsense quite often.

By that I mean the whole process of a single journalist taking down notes for an article right up to to the publishing process including the intervention of an editor. The notion that all sides must be represented in nouveu concept that has swept many aspects of modern life and not just journalism.

In journalism it takes away from the main purpose which is to investigate and present the best provable arguments from both sides and be able to point to holes in both arguments if necessary. If one sides has provably false claims these issues should be picked up on and pressed on.

Right now journalism, particularly in science and health issues, as a whole is broken because it relies on deference to "expertise", authority or plain and simple just asking both sides to comment and doing zero evaluation of the content of either argument.

The false notion is that a rounded article has been presented and that the reader is now in a position, due to the content of the article to make up their own minds, when they are not.

This is why certain people or groups use soundbites and spin.
 
D

Dolphin

Senior Member
Messages
17,567
Research 1st said:
''Thanks I’m working on it but not hugely optimistic – CFS is viewed in mainstream press as one of those impossible areas- going in is intervening in a civil war – you probably can’t broker a deal and it is more trouble than it is worth''.
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Because that if that is what a journalist really thinks and wasn't coerced to say by their boss who has links to the SMC, they should give up their job and take a Phd in cowardice.
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I'm guessing that you haven't read the article yet? I don't think that the journalist has shown cowardice in what they have written in the article.
 
Y

Yogi

Senior Member
Messages
1,132
Dolphin said:
I'm guessing that you haven't read the article yet? I don't think that the journalist has shown cowardice in what they have written in the article.
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Yes please read the article @Research 1st . The journalist has done a great job.

It's a great article- just needs to be front page of guardian or independent.


My responses above were about the response to the comment and in general about other journalists and newspapers saying that were afraid of this controversy to cover it in mainstream media.

The reason this is the case with media is because Wessely and SMC have spun the lie about him being safer in Afghanistan and Iraq. Ditto about researchers being scared off research apart from the psychs.

These are Wessely's lies which have become an urban myth.
 
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viggster

viggster

Senior Member
Messages
464
Regarding all the talk about why UK reporters haven't covered the PACE scandal recently, this comment from Mr. Burne on his piece strikes me as the single biggest reason. It certainly rings true with my experience as a science/medical reporter at a large daily paper. The health beat these days is not the place to do deep reporting. Of course it should be...but how many people who want that kind of reporting are willing to pay for it? The numbers say not very many. In a news environment where everyone wants everything for free, no one is going to get anything with much depth.
 

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Stewart

Stewart

Senior Member
Messages
291
Sidereal said:
Best not to heckle them in the future. Had that incident not happened, the ME/CFS community would have kept a clean sheet as far as 'harassment' goes (not that heckling is harassment but it's still something unpleasant that they can point to and exaggerate out of all proportion when it suits them).
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I don't entirely disagree with the point you're trying to make - but I also think that Marky90 did us all a bit of a service by heckling Chalder days before she appeared before the Tribunal. I'm sure that she could have come up with an alternative example of 'harassment' if she'd thought about it a bit longer and harder - one that would have probably cast patients in a worse light. Instead she focused on the first thing that came to mind - the most recent example she had - and ended up sounding as though as though she was unnecessarily exaggerating an utterly trivial exchange. Which is of course, exactly what she was actually doing.

So while heckling is rarely big or clever and not something to be encouraged, I strongly suspect Marky90's heckle has worked in our favour. Of course, that doesn't mean that it's now okay for everyone else to do it...
 
S

Solstice

Senior Member
Messages
641
Stewart said:
I don't entirely disagree with the point you're trying to make - but I also think that Marky90 did us all a bit of a service by heckling Chalder days before she appeared before the Tribunal. I'm sure that she could have come up with an alternative example of 'harassment' if she'd thought about it a bit longer and harder - one that would have probably cast patients in a worse light. Instead she focused on the first thing that came to mind - the most recent example she had - and ended up sounding as though as though she was unnecessarily exaggerating an utterly trivial exchange. Which is of course, exactly what she was actually doing.

So while heckling is rarely big or clever and not something to be encouraged, I strongly suspect Marky90's heckle has worked in our favour. Of course, that doesn't mean that it's now okay for everyone else to do it...
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How did stuff like that go for other psychologised diseases in the past? Was there a lot of in-your-face activism? Was it subtler? I'm just curious.
 
Y

Yogi

Senior Member
Messages
1,132
New article by Jerome Burne on Sunday 9 October:

The serious trust deficiency afflicting medical advice and what to do about it


It refers to PACE trial throughout .
Nothing to do with me guv.
The BMJ covered this dramatic story in a misleadingly low-key way. It didn’t spell out the long campaign to get the data or convey how damning was the dismissal of the reasons given for not releasing the data. This was especially curious because the journal has been campaigning for the release of hidden statin data for at least two years. Surely a patient’s successful use of Freedom of Information could have been hailed as a significant victory and maybe a strategy to try?

The Guardian was the only national paper to cover it but it didn’t even attempt to set out the details or provide any context. Instead of dishing out the forensic treatment given to wealthy tax dodgers or regulation busting banks, it handed over half a page to the lead author of the disputed trial to explain how hard he worked to help patients – most likely true –but which he followed with a curious use of the passive tense:
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http://healthinsightuk.org/2016/10/...cting-medical-advice-and-what-to-do-about-it/


Please read and leave comments on the Hippocratic Post and this latest article as he said it is read by doctors and he is trying to get published in mainstream UK media.
 
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