UK: Now, on R4 'Start the Week' - psych school approach to illness

sarah darwins

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More detail from the R4 website:

Illness: Psychosomatic and Physical
Start the Week

Tom Sutcliffe explores health and well-being from the musings of a 17th century doctor to the latest research into psychosomatic illness. The GP, Gavin Francis celebrates the marvels of the human body while Hugh Aldersey-Williams looks back at the life of the celebrated and ever-curious doctor Sir Thomas Browne. The consultant neurologist Suzanne O'Sullivan accepts that telling a patient 'it's all in your head' is unhelpful, but how do you treat those whose symptoms are medically unexplained, and may well have an emotional cause? Charlie Howard runs a youth mental health charity which takes the health professionals out of the clinic and onto the streets, and involves young people at all levels of diagnosis and treatment.
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sarah darwins said:
I can't bear to listen. I was hoping someone would summarise. I guess you just did!
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I normally avoid this stuff like the plague but I wanted to see if this was some MUPS-pushing thing or if UK clinicians are moving towards a more sensible 'just because we can't detect it doesn't mean it's not there' attitude - or, in our case, a 'just because I haven't bothered to review the latest literature on ME doesn't mean there's no evidence for an organic disease'.

And, as I said, I wanted to see that if some MUPS stuff turned up, whether the interviewer would challenge it.

But no, on all counts. And we seem to be the poster child for this crap. :bang-head:
 
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eafw

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The consultant neurologist Suzanne O'Sullivan
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The consultant neurologist Suzanne O'Sullivan has a book to promote. There's been two (favourable) pieces in the Guardian already, so it's getting a big push on the publicity.

I liked the review here

https://www.goodreads.com/review/show/1300842864

"I can say that the book is certainly not groundbreaking, but rather, in the case of ME, an irresponsible recycling of a dying narrative, which has been perpetuated by psychiatrists since the nineties."
 
sarah darwins

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Is there an obvious point of contact for journalists/show researchers to get hold contributors with non-psychosomatic perspectives? None of the major support associations in the UK seem to have a 'Press' link on their websites. Not easy to organise, but it wouldn't half help.
 
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sarah darwins said:
Is there an obvious point of contact for journalists/show researchers to get hold contributors with non-psychosomatic perspectives? None of the major support associations in the UK seem to have a 'Press' link on their websites. Not easy to organise, but it wouldn't half help.
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Would the researchers even think to do that? I wonder if we need to be writing to some of these programmes to point out that the psychosomatic view is extremely controversial and yet going unchallenged.

We need someone who's putting out a book of their own with an anti-psychosomatic message, maybe!

Sarah, didn't you say that you are/were a journalist? Could you help advise the charities on how to set up good press pages on their sites?

Edit: ... or know someone who could? Didn't mean to drop some work on you there!
 
eafw

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Sasha said:
I wonder if we need to be writing to some of these programmes to point out that the psychosomatic view is extremely controversial and yet going unchallenged.
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The way this book is being promoted shows how important "spin" and a publicity machine are - mainstream news outlets take what's been handed to them rather than going looking for information.

The science media centre are also masters at getting their (pro-psych) point of view in the press, and drowning out all else.

We do need a better PR machine, not simply to counter the psychobabble as it pops up but just to get more stories out there.

Compare O'Sullivans book - at the Hay festival, reviews in all the broadsheets, article by the author in the Guardian, Radio 4 interview (possible more we don't know of) - to the recent Invest in ME conference or the recent AfME (*)report condemning GET. The mainstream profile for these stories is practically non-existent, so the public are getting a massively distorted picture.

(*)edit: it was the MEA report
 
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sarah darwins

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Sasha said:
Would the researchers even think to do that? I wonder if we need to be writing to some of these programmes to point out that the psychosomatic view is extremely controversial and yet going unchallenged.

We need someone who's putting out a book of their own with an anti-psychosomatic message, maybe!

Sarah, didn't you say that you are/were a journalist? Could you help advise the charities on how to set up good press pages on their sites?

Edit: ... or know someone who could? Didn't mean to drop some work on you there!
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Hi Sasha,
Yes, if I had the energy I would like to do more, but I have too much on my plate at the moment.

I did write to one TV show not long ago, and I have a couple more on my list. But in truth that's unlikely to change much. I doubt such letters even get read.

Journalists are lazy and like to go with easy-to-find contributors. I have no idea if, say, the ME Association has enough people who would be willing and able to act in that role, but if they did then a clear Press page on their site with a list of available contributors, coupled with a press release to all and sundry advising them of this "exciting new resource", would probably make quite a difference. And including a link to that Press page in any future press releases would help make sure the list made it into every newsroom's contacts book.

The MEA may not feel this is their role. I don't know enough about them. But I'm just using them as an example.

One of the reasons I'm doing the KDM thing is to see if I can get enough improvements in my health to get more involved in this stuff (if anyone will have me), but right now it's not really an option.

ps. as @eafw just said, the "other side" are doing exactly what I just suggested through the SMC. It's there, and it's easy and quick for journos to access the SMC's duty list of available commentators, so that's whose voices we hear - http://www.sciencemediacentre.org/working-with-us/for-journalists/
 
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sarah darwins said:
Hi Sasha,
Yes, if I had the energy I would like to do more, but I have too much on my plate at the moment.

I did write to one TV show not long ago, and I have a couple more on my list. But in truth that's unlikely to change much. I doubt such letters even get read.

Journalists are lazy and like to go with easy-to-find contributors. I have no idea if, say, the ME Association has enough people who would be willing and able to act in that role, but if they did then a clear Press page on their site with a list of available contributors, coupled with a press release to all and sundry advising them of this "exciting new resource", would probably make quite a difference. And including a link to that Press page in any future press releases would help make sure the list made it into every newsroom's contacts book.

The MEA may not feel this is their role. I don't know enough about them. But I'm just using them as an example.

One of the reasons I'm doing the KDM thing is to see if I can get enough improvements in my health to get more involved in this stuff (if anyone will have me), but right now it's not really an option.

ps. as @eafw just said, the "other side" are doing exactly what I just suggested through the SMC. It's there, and it's easy and quick for journos to access the SMC's duty list of available commentators, so that's whose voices we hear - http://www.sciencemediacentre.org/working-with-us/for-journalists/
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@charles shepherd - just wanted to draw your attention to this thread and particularly to Sarah's post above.
 
jimells

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eafw said:
Compare O'Sullivans book - at the Hay festival, reviews in all the broadsheets, article by the author in the Guardian, Radio 4 interview (possible more we don't know of) - to the recent Invest in ME conference or the recent AfME (*)report condemning GET. The mainstream profile for these stories is practically non-existent, so the public are getting a massively distorted picture.
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She will probably be on the West side of the pond next week. I expect to hear her on CBC Radio One "The Current", NPR "Morning Edition", Terry Gross in the evening, and the PBS "Snooze Hour". It's really amazing how the publishing industry drives the news and how one author turns up on so many "public" broadcasting "shows".

I suppose author interviews are cheap to produce and easy to arrange, since the book publicist would provide all the background material, etc. But I always wonder about the financial arrangements - does the publisher pay for air time, or does the broadcaster pay for content?
 
jimells

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MEMum

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I've minimal experience of PR/journalism, but even something like a press release re IiME conference or similar might have a chance of getting some press attention.
Surely there must be a friend/relative of the 250k plus PWME, with relevant experience who could give some advice...[/QUOTE]
 
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