United Kingdom: Science Media Centre (including Fiona Fox)

Science Media Centre

'Review of the first three years of the mental health research function at the Science Media Centre'
February 2013

https://www.sciencemediacentre.org/...arch-function-at-the-Science-Media-Centre.pdf



Awards

'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'





Supporting experts targeted by extremists [Page 12]

'We have also been involved in supporting experts who have found themselves being targeted by individuals or groups who do not like their research. This has been particularly important in the case of psychiatrists and psychologists working on chronic fatigue syndrome/ME. These researchers have found themselves in the firing line from a small group of extremists who are opposed to psychiatrists or psychologists doing research on chronic fatigue syndrome/ME.


The SMC ran a press briefing on the first findings from the PACE trial, and supported the researchers involved throughout this process, for example, by organising media training in collaboration with the MRC.


When we became aware of the level of intimidation researchers were experiencing we brought together key parties for a brainstorm to discuss what could be done to aid researchers. At this event it was agreed that these harassed experts should speak out publically about the harassment they were experiencing.


As a result the BBC Radio 4 Today programme ran an exposé on the piece (http://www.bbc.co.uk/news/science-environment-14326514)

and a number of outlets followed the story including the Observer (http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgicencephalomyelitis) and

the Daily Mail (http://www.dailymail.co.uk/health/a...reats-investigating-psychological-causes.html).


For some researchers this media work has dramatically reduced the harassment they are experiencing. For others, however, things have not improved.

So the SMC ran a second brainstorm in early 2013 to discuss what can be done. It was agreed that more must be invested in putting the case for research of chronic fatigue syndrome/ME explaining the burden and seriousness of the disease both to the media and the public. The SMC will look for opportunities to do media work in this area.'




Seizing the agenda [Page 14]

'As well as breaking stories of new research and responding to mental health in the news, the SMC has also helped to set the agenda and frame the narrative of reporting on a number of big issues.'






The stories framed and orchestrated by the SMC put ALL ME sufferers under suspicion of being members of a dangerous "small group of extremists". The massive publicity created by the SMC for the story they themselves generated resulted in ME sufferers being regarded with hostility and accused "You harass and threaten researchers" right up to the present day. Fiona Fox portrays us as criminals. In reality she victimises ME sufferers.

 

I meant a formal complaint.

From what I've seen, complaints are rarely seen by those in UK medicine as a reason for serious investigation and self-reflection. There also seems to be a lack of alternative ways of encouraging serious investigation and self-reflection.

Seems that complaints are useful for helping us see how rubbish institution's complaints procedures are, and for getting more people in positions of authority to try to find ways to condemn us.

 

Bingo

 

In medicine that may be the case. However, quite often in other scenarios a complaint direct to the organisation itself is a required first step before going up ladders to regulation and the like. Probably worth getting all the ideas together and seeing what process is involved with what route etc.

 

Yes, I agree on that.

Maybe we should simply be pleased to see Fiona Fox having spilt the beans on her attitude to science - that she is quite happy to back poor quality work that harms patients because she is unable to make any useful judgment about quality herself. And she also sees herself as a great crusader in this regard.

The odd thing is that it is a bit like going on championing a president who just lost the election.

Edit: as Bobbler says, this is not necessarily about audit in medicine. This is a much wider issue about the public presentation of science and the organisation being criticised is not specifically medical.

 

We appear to be the only people who see the massive flaws in Fox's chapter on the fictions she herself generated. Nobody is going to see through Fox's storymaking unless it is pointed out and spelled out to them.

The vast majority of BBC Radio 4 listeners and newspaper readers believed every word of the onslaught of lurid portrayals of nasty dangerous extremists and innocent, decent and intimidated scientists.

The press propaganda worked in 2011, 2013 and onwards and the propaganda in FF's Memoirs book will work now. It has to be challenged somehow.

 

A paid in person event
https://www.rigb.org/whats-on/beyond-hype-inside-story-sciences-biggest-media-controversies

 

If anyone else can get a word in edgeways. FF talked almost non stop for nearly one and a half hours in this interview about her book (Skeptics in the pub online)

At 49.53 FF listing the content of other chapters in her book:
".. the sorry story of the intimidation of researchers working on ME/CFS"


The intimidation can only be alleged because to our knowledge there have been no courtcases or convictions of the supposed 'intimidators'. The only court case being the FOI Tribunal at which no evidence was produced, apart from one instance of "heckling". But FF talks about "intimidation of researchers" as if proven.

https://www.youtube.com/watch?v=WQXru-H2kPA

 

Also, last day of the Hay Festival [eta: 5 June].

https://www.hayfestival.com/p-19079-fiona-fox-talks-to-marcus-du-sautoy.aspx

I won't be going, because it will be an absolute plague pit - 1000s of people, no masks.

 

@Jonathan Edwards one of the Trustees appears to have a more balanced view re ME, looking at his comments on the release of the NICE Guidelines last October

https://www.sciencemediacentre.org/...deline-on-diagnosis-and-management-of-me-cfs/

Extracts from "Prof Kevin McConway, Emeritus Professor of Applied Statistics, The Open University,"
(His comments are long and do not have good soundbites that can be readily extracted, but overall they indicate a more rational position)

“Given the considerable numbers of people who suffer from ME/CFS themselves, who in many cases are very seriously affected for very long periods of time, and also their families, friends and colleagues who are indirectly affected, it’s very good to see that this NICE guideline has eventually appeared. It’s concerning that there has been so much unclarity for so long about the condition and how it should be managed, and I just hope that the new guideline will lead to more consensus and more progress.

“Although there was a previous NICE guideline on this, dating back to 2007, this new one has had to change quite a lot. One change is in the name of the condition – the previous guideline called it CFS/ME, and the name has changed in this one to ME/CFS – I know that names do matter. I’ll comment on just a few aspects, mostly to do with the process of producing the guideline. NICE have a very detailed set of procedures for producing guidelines like this. Although any such process must, to some extent, involve human judgement, the NICE procedure requires a lot of documentation on the evaluation of the evidence behind the guideline to be published. In this case there are 10 separate documents of evidence reviews, amounting to over 2,600 pages in all."

"The guideline defines PEM as: “The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse.” It’s important in clinical research investigating interventions or treatments that there’s a clear definition of who can be included in a trial or other study as a person with the disease or condition of interest. Many previous trials used a definition of ME/CFS that did not require the trial participants to have PEM, so that on the new NICE diagnostic criteria (and on some other sets of criteria), these studies could have included people who did not have ME/CFS because they did not report post-exertional malaise."

I do remeber thinking at the time, that Graham would have been pleased to see a statistitian on the Board of Triustees.

 

Interesting, she says they are a very small organisation with only 5 press officers (plus other staff/management I can assume). But this is equivalent to many/most (?) university PR departments, and I'm not sure that the work they are doing is any different or would call for more for any reason (particularly as they only deal with 'science' and not the multitude other subjects and other areas that would need PR at a university).

 

More than a complaint it would be useful to show how Fox is spreading misinformation when the SMC proclaims itself to be a solution to misinformation.

 

Carmine Pariante interviewed FF about her book in the 'Inspire the Mind' blog, dated 24/5/2022.


https://twitter.com/user/status/1529136060952870914






https://www.inspirethemind.org/blog...iona-fox-the-head-of-the-science-media-centre

“The book was mostly written in a sabbatical I took in 2019, in a lovely cottage in Donegal”, she explains.
The aim at that time was to put together the stories that had framed the SMC’s activities of the last few years — from illegal drugs to climate change, from animal research to GM food, from human-animal embryos to Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis.... "


“Part-memoir, part-manifesto for change”, in Fiona’s own words.

So, what does this “charismatic and sometimes combative” woman (as Nature described her almost 10 years ago) want to change?

“The ability of the public to hear from the scientists is paramount”, she continues, yet “at risk of being undermined in a variety of ways, whether by government communication officers, press offices’ corporate strategic priorities, harassment of researchers on social media, and the general polarisation of the scientific debate.”

Hence the book, now, and the opportunity to have her voice heard in the printed media and in podcasts.'


'Isn’t she worried that she had become, in Alastair Campbell’s famous words that Fiona reports in her book, the press officer [who] becomes the story?

“I had thought about this”, she firmly replies. “I did not want to be the story. I considered waiting until after retirement to publish the book.”

But she was worried that openness in science communication was under threat.

“Things had changed so dramatically in the last two years. Waiting was not an option.”





it's just horrifying that the manufactured ME extremists story of 2011, that was so clearly a Dead Cat Strategy to divert attention away from criticism of PACE, has become embedded in FF's narrative of the worth of the SMC and what scientists are supposed to need from it. She repeats her 'ME/CFS researchers intimidation' story over and over. Scientists, journalists and the public wouldn't know there is no 'group of ME extremists'. There never was. They don't exist, and never did.

 

...but what makes it particularly nauseating is that when it came to genuine genocide and terrorism she seems to have taken the side of the perpetrators and had no sympathy for the victims.

It is not the infamous "moral compass "which she lacks. It is more the "moral clinometer". It is not the direction of travel but the depth to which she has sunk that is the issue.

 

I thought that as soon as I saw the title of the book; maybe it should be 'Behind the Hype' rather than beyond the hype.

 

I was interested to note today at UCL Grand Rounds that colleagues had little or no awareness of the SMC. I don't think in medical circles anybody sees it as relevant.

Which raises the question of whether anyone actually takes any notice of Fiona Fox and her colleagues.

 

it may well be that the BBC and less perceptive copywriters do, in contrast to the journalists I talk to, who tend to see sense at least some of the time.

 

Still no change. I tried to query it with an Amazon chatbot yesterday. They'd said they'd let me know what was going on, but I still haven't heard anything.

Apparently, their algorithms trigger to shut down reviews if there are lots of 1-star reviews within a short time period. It's an anti-trolling measure.

I think we're being silenced. :/