United Kingdom: Science Media Centre (including Fiona Fox)

FMMM1 said:
I personally feel that people like Professor Riley should be contacted/given the opportunity to correct the record.
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Agreed. Just because an assistant helped and certain individuals were encouraging for it to be written doesn't confirm that all the individuals got the opportunity to read the book pre-publication. It sounds like they approved this, but we do not know the process as to whether they've been 'done over' or did get behind this, and if so whether they'd been hoodwinked on full disclosure of the issues (or just told 'contentious' rather than the true facts)

Clarity that they were all informed fully and had an opportunity to respond one way or another is an important stage. I see no benefit from having people claiming 'didn't realise how bad it was' and minimising the argument to something else when if that is the case then said criticism should be levelled internally at those who did not inform (and obvious process/other changes and reforms made to prevent it happening again etc) with public confirmation.
 
From the Pariente interview:
Fiona Fox said:
“We are very supportive and enthusiastic about open access publishing, but that’s about the scientific process and openness. The process for communicating science to the public through the news media is a separate issue and there are dangers of the public reading about very early research findings in the news before they have been peer reviewed and published”.
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This is classic gate-keeper behaviour. The general public aren't to be trusted with reading actual scientific manuscripts, instead they should only hear about research that has been filtered by a series of carefully selected experts who will promote the 'correct' narrative. (By correct, I mean the view that the organisations that fund the SMC want promoted)
 
Snow Leopard said:
This is classic gate-keeper behaviour. The general public aren't to be trusted with reading actual scientific manuscripts, instead they should only hear about research that has been filtered by a series of carefully selected experts who will promote the 'correct' narrative. (By correct, I mean the view that the organisations that fund the SMC want promoted)
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Having now finished the book, I don't think it's anything like that really. It's much more mundane. And there's also somewhat of a conflict, in that the media generally see most science stories as entertainment more than anything else (like the mutant angry hamster story that is currently doing the rounds).

The issues come into sharper focus when the news involves public health, or conflict with minority groups. On the whole, her views are a little control-freaky - but in some ways, having somewhere for the media to go to get advice on science stories does make sense - I'm just not sure that the SMC as it currently stands is the right way to do it - but then, there will probably never be a "right way", because each issue is different.

And that's the thing. She fails to notice that each story involves its own nuances, and often the take-away points from one will contradict those from another. I found it interesting comparing what they did (and what she said) about the whole climategate email saga with chapter 3, because although the core issues are somewhat similar (at least from their point of view - "activists hack/steal/gain through nefarious means (FOI requests) information they're not supposed to have - scientists forced to explain themselves"), they were handled very differently. For climategate, they were told expressly not to concentrate on the harrassment issues, and focus on the science. For chapter 3, it is clearly the opposite. Because if they focussed on the science, it would be found wanting. She doesn't seem aware of the contradiction there.
 
Edited and expanded post:

Thank you for that insightful post Lucibee, and for your Blog article. I do think FF is perfectly aware of the contradictions in her stance on the different issues of the different chapters and is more than a bit of a control freak and knows exactly what she has done. When writing about ME, FF's mindset and tone seems to be more News of the World than anything else. But why be a mere journalist when you can have an entire empire (SMC) from which to exercise one's control freakery.



Fox's "general apology to anyone who 'feels overlooked or misrepresented'." by what she has written in her book is no more convincing than her 'apology' for having made a harassing hoax phone call to MP Jim Devine's office manager Marion Kinley (who the MP was bullying). Fiona Fox pretended to be a journalist investigating the Office Manager's financial affairs. The MP's Office Manager discovered the hoax call was made by the Director of the SMC, it all came out in an Employment Tribunal, which ordered the MP Jim Devine to pay his Office Manager £35,000 damages.



Fiona Fox apology:
""I am pleased Miss Kinley has won her case and deeply regret being unwittingly drawn into this unpleasant saga. In a very, very small way I too was duped by this man. He had assured me that this kind of prank was part and parcel of the humour in his team and that his colleagues gave as good as they got. At that time I had no reason to doubt the integrity of a Member of Parliament who I got to know because of his public support for stem cell research during the Human Fertility and Embryology Bill in 2008."

https://www.theguardian.com/science/blog/2010/oct/15/science-media-centre-hoax-call




"In a very, very small way" Fiona Fox "was duped" into making a hoax phone call. She had a "small insight into what [ME] might involve" and a "tiny insight into just how isolating and miserable ME/CFS can be".

I don't believe either Fiona Fox "being duped" by MP Jim Devine or her having any "tiny insight" into having ME. Would she have been cured of her post viral fatigue by CBT and GET, instead of being in bed and looked after by her parents? I do believe she is an arch manipulator who always wriggles out of any responsibility for the havoc she creates.



Fiona Fox gave evidence to the Leveson Inquiry in January 2012. The Leveson inquiry was a judicial public inquiry into the culture, practices and ethics of the British press following the News International phone hacking scandal.


So, the year after she engineered massive press reporting for the story she created claiming PACE was a great success, and circa 6 months after she "gave" Tom Feilden a story about 'harassments and intimidation of 'CFS/ME researchers' for Radio 4 Today program, at the Leveson Inquiry Fiona Fox did a manipulative deflection away from her own massive influence on how ME was reported in the UK (and international) media by focusing on how XRMV was reported on in the media.


The SMC 'Review of the first three years of the mental health research function at the Science Media Centre'.

"Tom Feilden, science correspondent for BBC Radio 4’s Today programme, won the UK Press Gazette's first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME. The SMC had nominated him for the award."

The story Tom Feilden was given was broadcast on 29th July 2011.




Fiona Fox at the Leveson Inquiry 24/1/2012,

Fiona Fox "We shouldn't be seeing "miracle" or "cure" on stories unless they are proven to be such" .......


She goes on to showcase how reporting on XMRV was premature and based on a single study:

Mr Jay (QC)
"Then you point out that very often claims even in scientific journals, although they usually are very heavily caveated, turn out not to be true. That, I suppose, is the life history of science, that most claims in science turn out not to be true."


Ms Fiona Fox
"That's right. The example I give of the XMRV virus -- again, I don't know if you know anything about chronic fatigue syndrome or ME -- "

She goes on to showcase how reporting on XMRV was premature and based on a single study:


Ms Fiona Fox
"I don't know how we disagree, but it is a disease which affects many, many people which causes chronic fatigue and many people cannot work. Some children have MECFS but they have never found a biological cause. They've found many things that contribute to it and there are treatments that are effective, but for many people, to discover that a virus has been found in the samples of, I think, 60 per cent of patients was extraordinary. We found a biological cause. And not only that, it promised an effective treatment. The treatments we have can alleviate the symptoms but they don't cure the disease.

So this was huge hope for everybody. It was published in a good journal and it was run on the front pages, but again, I think the question newsrooms should have asked is: this is extraordinary. Has it been replicated? Has it been found before? The answer is is: no. No one has ever found it before and this is the first study. Let's put it in the inside pages.

In fact, in the States, people were running out buying tests for this virus, buying treatments which had helped alleviate other symptoms of this virus and then, within months, a group from Imperial College London came to the SMC. They tried to find it, couldn't find it, a group in Holland, a group in the States, and now we've had about ten studies. They cannot find it, and it ends it up it was contaminated samples.

Again, it was in Science. It was in a good journal. It's right that the journalists write it up but not splash it on the front page. It's too preliminary.

So we love science on the front page and there's some fantastic science stories. There's plenty of opportunities but I think it would resolve a lot of problems if journalists just didn't overclaim for these studies."

https://leveson.sayit.mysociety.org/hearing-24-january-2012/ms-fiona-fox





Fiona Fox "it would resolve a lot of problems if journalists just didn't overclaim for these studies"

Says the woman who herself engineered and orchestrated massive overclaiming by journalists of success of CBT and GET as treatments for ME only one year earlier.




July 2012 The Leveson Inquiry publishes the SMC’s guidelines for science and health reporting on its website


https://www.sciencemediacentre.org/...ews-from-the-front-line-essays-on-the-SMC.pdf
 
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adambeyoncelowe said:
This is about the resignations.

The guideline was signed off by all members before the resignations occurred. Each section was signed off over a number of meetings, and the final draft was then agreed by all.

NICE suggested minor tweaks before the pause, which Peter Barry and Ilora Finlay signed off on our behalf, but which kept the spirit and the letter of the GL intact (it was mainly punctuation, order and wording, that sort of thing).

ETA: We did have right of refusal on these, but didn't need it.

The final version was also signed off by NICE, the chair and the co-chair, taking into account the roundtable discussion, and it didn't include any changes to substance (mainly things like adding more text boxes to add clarity and context).

The reasons they left are their own, but I was informed they were more complicated and individual than 'I don't like this'. I think external factors were an issue in at least two cases, if not all three.
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Thank you Adam.

Currently too unwell to check myself, but my impression is the misleading implication that the 3 resignations occurred before the guideline was signed off by the committee is made repeatedly on 'authoritative' platforms, of which the Lancet (Flottorp et al's opinion piece) is only one example?

Can we track the beginning? Was it the BMJ news articles on the guideline pause?

Apart from posts here on the forum, did anyone rebut that wrong claim?

Edit: sense
 
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Lou B Lou said:
Thanks for that insightful post Lucibee. I do think FF is perfectly aware of the contradictions in her stance on the different issues of the different chapters and more than a bit control freak and knows exactly what she has done. When writing about ME FF's mindset seems to be more News of the World than actual Science reporting. Why be a mere journalist when you can have an entire empire (SMC) from which to exercise one's control freakery.
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I think it has a lot to do with the individuals involved in the SMC, including Wessely as a founding trustee; who FF's friends are; and FF being a non scientist a bit in thrall to 'the science/medical professor is always right'. There is also the involvement of Colin Blakemore who had problems with threats from animal rights extremists.

I can just imagine Fox, Wessely and Blakemore sitting in a meeting dreaming up the 'ME patients are extremists' narrative and deciding to run with it. Perhaps it was dreamed up around the dinner table with Clare Fox, Fiona's sister, and her friend Clare Gerada, Wessely's wife. This is of course all speculation on my part how it arose, but it clearly wasn't from objective examination of the science.

For Fox, it was a way of creating media attention, raising the profile of herself and the SMC, and for Wessely it was a useful narrative to use to conflate all criticism under the 'angry patients' umbrella to deflect any attempts to look at the substance of the criticisms, and for deflecting the SMC from doing what it should have done, and dug deeper and sought other points of view and listened to the critiques.
 
Ah yes. The Dinner Party Policy and Publicity Making. Ways and means of courting power people and journalists.

I still find it hard to see why Colin Blakemore adds his name to defending SW et al against marginalised and upset sick people.
Colin Blakemore was sent letters laced with razor blades and parcel bombs. SW was sent Bob Dylan lyrics (or read them posted in a very obscure Blog).
 
Snow Leopard said:
From the Pariente interview:


This is classic gate-keeper behaviour. The general public aren't to be trusted with reading actual scientific manuscripts, instead they should only hear about research that has been filtered by a series of carefully selected experts who will promote the 'correct' narrative. (By correct, I mean the view that the organisations that fund the SMC want promoted)
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Yep and 'peer-reviewed' seems to be their latest buzzword, but given the current state of it means very little (with regards quality) in certain subject areas currently - as well of course as said criticism from a review never being in their articles anyway. The fact that PACE was debunked and they are all going round saying it is 'big evidence' totally undermines their very point. Peer reviewed, which said it was crap, doesn't mean 'good quality' at all.

And the fact they are waging a campaign against Nice's quality assessment ('how very dare they') says it all..
 
Lou B Lou said:
Ah yes. The Dinner Party Policy and Publicity Making. Ways and means of courting power people and journalists.

I still find it hard to see why Colin Blakemore adds his name to defending SW et al against marginalised and upset sick people.
Colin Blakemore was sent letters laced with razor blades and parcel bombs. SW was sent Bob Dylan lyrics (or read them posted in a very obscure Blog).
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Blakemore was tied to PACE from the outset, when he was chair of the MRC he made it his own crusade to increase funding for Psychology - £5 million for PACE was his big win.
 
Sean said:
'First they came for the communists...'

First they came for the disabled children, actually.
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The disabled were the first group that were systematically murdered by the Nazis and also the first whom the Nazis killed by gas.

I think the poem refers to all the victim groups that were persecuted, terrorized and arrested though, at first on the streets, in simple police prisons and the "wild" concentration camps. It doesn't make sense otherwise because even though there was severe political violence, there was no systematic mass murder in the concentration camps before the second world war.

The very first groups that the Nazis persecuted and terrorized after they were given power were the communists and the Jews.

I think it's interesting that the author wrote those lines to acknowledge his own guilt as an early supporter of Hitler and being complicit with the Nazi regime, see:
https://www.hmd.org.uk/resource/pastor-martin-niemoller-hmd-2021/

(Edit: Only later he explicitly acknowledged that he had been an Anti-semite.)

Anyway, it's not only a scandalous comparison with the Nazi perpetrators and collaborators, but also a mockery of the victims to quote Niemöller's lines to refer to people who take patients' critique of bad and harmful science seriously. And that those of the SMC staff who helped Fox write her book didn't object, is even a bigger scandal.

Apologies for bad wording, brain-fogged.
 
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Lou B Lou said:
Fiona Fox "it would resolve a lot of problems if journalists just didn't overclaim for these studies"
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Then why did SMC hype Professor Crawley's Lightning Process study, which violated core principles of scientific research and seems to be a case of serious research misconduct? that was the first such trial, and of course the idea that the LP cures people is an "extraordinary" claim, in Fox's words, and should require extraordinary evidence--not a manipulated piece of crap like Crawley's mess.
 
dave30th said:
Then why did SMC hype Professor Crawley's Lightning Process study, which violated core principles of scientific research and seems to be a case of serious research misconduct? that was the first such trial, and of course the idea that the LP cures people is an "extraordinary" claim, in Fox's words, and should require extraordinary evidence--not a manipulated piece of crap like Crawley's mess.
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Looks like either Fiona Fox thinks her and the SMC don't have to follow the SMC’s guidelines for science and health reporting (that The Leveson Inquiry published on its website in July 2012). Or that reporting on ME and on studies on ME sufferers are the exception, and that standards don't apply to us.

'10 best practice guidelines for reporting science & health stories'

https://www.sciencemediacentre.org/...idelines-for-science-and-health-reporting.pdf
 
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MSEsperanza said:
Currently too unwell to check myself, but my impression is the misleading implication that the 3 resignations occurred before the guideline was signed off by the committee is made repeatedly on 'authoritative' platforms, of which the Lancet (Flottorp et al's opinion piece) is only one example?

Can we track the beginning? Was it the BMJ news articles on the guideline pause?
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Now found it - was before the pause:

Ingrid Torjesen: Exclusive: Four members of NICE’s guideline committee on ME/CFS stand down | The BMJ

https://www.bmj.com/content/374/bmj.n1937/rapid-responses

Two relevant snippets:
BMJ_NICE_committee_20210803_snippet_01.jpg BMJ_NICE_committee_20210803_snippet_02.jpg

So Garner...
 
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Lou B Lou said:
Looks like either Fiona Fox thinks her and the SMC don't have to follow the SMC’s guidelines for science and health reporting (that The Leveson Inquiry published on its website in July 2012). Or that reporting on ME and on studies on ME sufferers are the exception, and that standards don't apply to us.

'10 best practice guidelines for reporting science & health stories'

https://www.sciencemediacentre.org/...idelines-for-science-and-health-reporting.pdf
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Just like Cochrane and how their rules and principles don't apply to us. By their own guiding principles none of the evidence base for anything MUS and BPS is valid, they all fall short of basic requirements as being highly biased, conflicted and having very low reliability. The exception is about us, pseudoscience is fine for pseudoillness, as are pseudoethics and pseudoduties.

Oddly enough, de-medicalizing and denying disease has far-reaching consequences that bleed into the culture.
 
Fox wrote "There have even been debates in parliament about the PACE trial, with at least one MP using parliamentary privilege to allege that the trial was fraudulent."

Does anyone know who she is referring to?

I checked the 4x transcripts and there was no record of the word "fraud" or "fraudulent".

Sharpe has tweeted about "implied research misconduct" though.
 

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