Thank you, @adambeyoncelowe

One of the things I am tired of hearing about is the idea that BPS people who mention ME are at risk from "militant activists". I have never, ever heard or read of anyone anywhere being arrested, charged and sentenced for threatening or attacking any BPS person. If such a thing had happened the BPS crowd would have mentioned it ten thousand times by now and would have brought it up in every interview and every piece of writing.

It all seems to be a shared delusion amongst them. They appear to consider anyone disagreeing with them and their theories as being "dangerous" and "militant".
FF does go overboard with hyperbole in her book, but ME sufferers are still confronted with accusations that they 'harass and threaten researchers'. There was such an extended onslaught of lurid misinformation, with repetition, a great many people do believe it. Those stories operate like thought-terminating narratives.
Which is why I am in favour of a circuit-breaking robust transparent independent formal inquiry in the UK into this particular issue, with the power to order documents and witnesses, and interrogate under oath, in public.

This toxic defamatory shit is not going away until the accusers are required to put up or shut up in a forum where there is nowhere to hide.

This issue must be settled, and it has to happen now, not next century when all the guilty are long dead.

I know nothing is risk-free, but does anybody seriously think we have much to fear from this?

Few things could swing public opinion in our favour more than the vicous decades-long propaganda hit job on very sick patients by certain elements of the psych community and their allies being exposed for what it is.

It would also give the rest of the UK medical profession a face-saving out. They can pretend to be horrified about how they were lied to by their psych colleagues, and throw them under a bus. As can the UK political, business, and media classes too.

Yes. How dare people be assertive in defence of their interests from unwarranted attack.
"I sit on a man's back, choking him and making him carry me, and yet assure myself and others that I am very sorry for him and wish to ease his lot by all possible means - except by getting off his back."
Leo Tolstoy
 
Thanks Lucibee for what I assume is your review. Really excellent. Gets to the nub of the issue in a few short clear sentences.
_____________________

I have been reading the acknowledgements in the book. It becomes clear that this is an SMC book, not just a personal account. On that basis I think complaints need to be made to the SMC board of Trustees.

From the acknowledgements:

One member of staff appointed in 2019 having included in his job description 'to support the CEO in writing her book'. She goes on to say 'Little did Alex know what a huge part of his job this would become... He worked stupidly hard on the book...I think there would be no book without him'.

She also thanks others who helped with particular sections. For ME/CFS she names Professor Carmine Pariante, Carol Rubra, Ed Sykes and Sarah Boseley. (see below)

And she thanks the SMC chair of trustees Jonathan Baker who urged her to get on and write the book and was 'the only non-SMC staffer who read the book before it went to print.'

Edit to add:

Carol Rubra
From Linkedin
Senior News Editor, Health and Wellbeing Story team, News Content BBC News

Ed Sykes
From his Twitter profile:
Works at Huma, formerly of the Science Media Centre and Babylon
From the Huma very uninformative website they are a 'Global healthcare company'
Sykes is their head of media and communications.

Sarah Boseley is the former health editor of the Guardian. In a 37-year career at the Guardian she won a number of awards for her work...
 
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She goes on to say 'Little did Alex know what a huge part of his job this would become... He worked stupidly hard on the book...I think there would be no book without him

That, then, would be Alex Durk, holder of a physics degree from Durham. staff | Science Media Centre

It can hardly be said that she wrote this in a personal capacity and that the views expressed are her own.
 
I'm now reading the introduction in which she says a bit about each topic covered.
Here's the bit about ME/CFS:

Not all the stories I have been involved in have ended positively or fit neatly into a wider theme - or arguably even our specific remit - but they cannot be left out. The SMC did relatively little on the controversy that arose when Nobel Prize winning biologist Sir Tim Hunt made sexist remarks... I ended up advising him ... became a major global science story... Conversely, the bitter row over research into [ME/CFS] is not an issue most readers will have heard about, but it contains important lessons about what we do at the SMC when research evidence and scientists come under sustained attack (chapter 3).
My bolding. The level of her certainty that she is on the side of science and evidence here is frightening. I'd like to ask her who and what convinced her she was on the right side here.
 
It can hardly be said that she wrote this in a personal capacity and that the views expressed are her own.
This bit of the intro shows just how shoddy a piece of work it is:

She talks about not keeping diaries, so what she writes is based on her memories which she acknowledges won't always be accurate, and she throws in a general apology to anyone who 'feels overlooked or misrepresented'.

'When I recently told a Home Office press officer that I was writing about the sacking of Professor David Nutt, he suggested I check that my version of events accorded with his. I politely declined his offer. This book is not intended to be an objective record of science in the media in the twenty first century: it is my account of my time in it. Or to put it another way - this is my book, and all the things in it are what I remember. Mostly it is about the people and the stories that touched, angered or inspired me, and the lessons learned from each, ...'

That reminds me vividly of some politicians' apologies. Completely hollow. She clearly doesn't care a jot about misrepresenting pwME, nor about taking sides so vigorously and getting her facts wrong in a way that has caused immeasurable harm.
 
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Now that's unfair. I don't doubt that she wrote it - but as there is no editor mentioned, I expect he fulfilled that role. It's a thankless task!
The editor at the publisher is mentioned and thanked in the acknowledgements. (Olivia Bays at Elliot and Thompson) for 'a huge amount of time Olivia invested in transforming it from a book aimed at my immediate science circle to one that a wider audience might enjoy.'
 
Now that's unfair. I don't doubt that she wrote it - but as there is no editor mentioned, I expect he fulfilled that role. It's a thankless task!

I don't doubt that she did much of the writing. My point was rather different. If "Alex" undertook work on the project whilst his time was paid for by the SMC rather than by FF this is not merely her project. FF says that this was a part of Alex's job.
 
That was the point I was trying to make. It's not just a personal project, it was clearly done as part of her job with the encouragement of the Chair of Trustees, so both she and Alex were paid by the SMC to write the book, and the chair read and presumably approved it.
 
That was the point I was trying to make. It's not just a personal project, it was clearly done as part of her job with the encouragement of the Chair of Trustees, so both she and Alex were paid by the SMC to write the book, and the chair read and presumably approved it.
I think the phrase "banged to rights" applies and that MEA, AfME and ForwardME should all be encouraged to make complaints to the SMCs Trustees re: the offending chapter.
 
I am wondering this morning if it (the ME chapter) was written partly to get us to take the bait. Lets be careful.

We need to avoid (as far as possible) them being able to say

'See, see how they are going mad now, i only said what i remember, look at them ganging up on me, look at those tweets, i told you they were .....'
 
Carol Rubra responded to some concerns about an interview with Crawley, signing off with this:

Finally I would like to reassure you over the relations between the Science Media Centre and BBC News. The SMC is a valuable resource for advice on matters requiring expert understanding but it does not condition our journalism. BBC science and health journalists always check directly with the researchers involved in the reports they cover, Their journalism is independent and imperial, in keeping with the BBC Editorial guidelines.

https://meassociation.org.uk/2016/1...r-about-the-fitnet-nhs-trial-9-december-2016/

A meander of posts discussing the BBC (is it imperial, is it impartial? why is it referred to as Aunty?) has been moved here
A thread of no importance. Post something completely inconsequential.
 
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I am wondering this morning if it (the ME chapter) was written partly to get us to take the bait. Lets be careful.

We need to avoid (as far as possible) them being able to say

'See, see how they are going mad now, i only said what i remember, look at them ganging up on me, look at those tweets, i told you they were .....'
That’s why it’s good to see considered responses like @Lucibee s draft. It’s very far from the social media knee jerk response that they might prefer.
 
The SMC did relatively little on the controversy that arose when Nobel Prize winning biologist Sir Tim Hunt made sexist remarks... I ended up advising him
That really doesn't sound like what a neutral organization working in objective science reporting should be doing. This is PR. Literally. Just as... uh... Some Sarah something or whatever? Who wrote the PR Reuters piece while working at the SMC.

The SMC is a public relations organization, not a journalism or media organization. It manages perception.
 
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