United Kingdom: Science Media Centre (including Fiona Fox)

We have had YUPPIEs
And NIMBYs
And DINKYs

I propose the TOWDGIs

The ones who don't get it.

An interesting byproduct of something like Fox's book is how it flushes out the TOWDGIs
I guess Dorothy Bishop has played that role before in this story.

 

Just scrolling through the transcript, this bit on debate seemed relevant:

 

The Royal Institution are holding an event promoting it

Tue, 7 June 2022

19:00 – 20:30 BST

https://www.rigb.org/whats-on/beyond-hype-inside-story-sciences-biggest-media-controversies

and she's been interviewed a lot about it
eg podcast

https://cosmicshambles.com/bookshambles/fiona-fox

more reviews here
https://www.goodreads.com/book/show/60317725-beyond-the-hype

eta:
blog book review

http://deevybee.blogspot.com/2022/04/book-review-fiona-fox-beyond-hype.html

 

Fiona Fox's greatest talent is manipulation and spinning a beguiling yarn. Depressing how many otherwise intelligent people are so enchanted by her stories they forget how to separate fact from fiction.

 

Does anybody think that a formal complaint should be made to the board of the SMC about that headline for the ME chapter. It seems unprofessional and liable to bring the organisation into disrepute? There is no way that the SMC could now pretend to be holding a proper impartial line. I know that she has been subject to provocations. That is no excuse. The organisation cannot now be taken seriously.

 

Yes, I was wondering who the board of trustees were.

 

https://www.sciencemediacentre.org/about-us/governance/

 

Its so demoralising, i just thought we were getting somewhere & now we have to put up with yet more lies & manipulation. When will we be free of this poisonous crap.

Its the way it gets lapped up in such a credulous manner that makes me nauseated

 

The trustees of SMC seem to be a rather faceless group of communicator people. I am not sure that they would know what to do in response to a complaint other than find some way to support Fox.

On the other hand the group of advisers, apart from a load of journalists, includes two notable biomedical scientists.

Prof Eleanor Riley was part of the London School of Hygiene NIH CureME group until she moved to Edinburgh in about 2016 (which of course includes both Luis Nacul and Caroline Kingdon, who were on the NICE committee). She was in charge of the 'search' process looking for advice on high quality research for MRC to fund that contributed to DecodeME being funded. She has a high reputation in immunology and is I think a member of Council at MRC.

Prof Russell Viner is an eminent paediatrician based at Great Ormond Street Hospital, London, who has been President of RCPCH. He may be particularly likely to be offended by references to Nazism.

If people thought this was a good idea then maybe we should send a formal message to the advisory committee.

 

When it comes to ideas marketing is agnostic toward the truth. It doesn't enter into it.

And it's easy to include the underdog view of ME into the climate change/vaccine/covid denier camp.

But a realistic parsing of the ME situation is more akin to big tobacco denying cancer and emphysema are related to smoking. Or the protracted resistance from science to the idea that medics hand-washing saves lives.

With regards to BPS and ME it is the appeal to authority and not science that has won out most often.

 

The advisory committee consists of:

Ian Brunskill
Associate Editor, The Times and The Sunday Times

Prof Eleanor Riley
Professor of Immunology and Infectious Disease, The University of Edinburgh

Shaun Lintern
Health Editor, The Sunday Times

Rebecca Morelle
Science Editor, BBC News

Christine McGourty
Chief Executive, Water UK, and former BBC Science Correspondent

Mark Sudbury
Head, World 100 Reputation Network, and former Director of Communications at UCL

Prof Russell Viner
Professor of Adolescent Health, UCL Great Ormond St. Institute of Child Health

Dr Jennie Evans
Director of External Affairs, British Society for Immunology

Will Moy
Chief Executive Officer, Full Fact

Jane Kirby
Health and Science Editor, PA Media

Dr Ruth McKernan
Venture Partner, SV Health Managers LLP

 

Let them know that was Fox is saying is inaccurate. The "harassment" turned out to be freedom of information requests, and the death threats seem very likely grossly exaggerated or entirely made up (I suspect most of them are made up), and even if they happened, they are being used to attack sick people via guilt by association. It's grossly unethical.

The "patients vs scientists" was really a conflict between two different groups, one which had access to the media and used this to attack the other because they could not win in a scientific debate. And the NIH, IOM, NICE, UK health secretary, Dutch Health Council all have taken the biomedical side now (the CRMC too but not sure if they have any standing?). It really is absurd to present this as misguided patients vs caring scientists.

Another absurdity is this fantasy of a silent majority that loves CBT/GET. Where is the evidence? I've never seen anything but extremely marginal support for CBT/GET among patients. The NICE guideline that BANNED CBT/GET received 25000 signatures (I think) in support. There were no signals of support from the patient community.

Fox is creating some sort of alternative reality contradicted by the facts. Whether she is doing this intentionally or is a victim of disinformation handed to her I don't know.

 

Yes it's also serious journalistic failure to get facts so wrong.

 

It's pretty staggering that the Trustees and Advisory Committee seem to be there only to give credibility to the loose cannon dissembler FF, who appears to have them all on a string.

Who is actually in charge of the SMC?

There is no accountability there.

It's a one woman show.

 

Another interesting aspect of this is what we now know about bias at SMC.

In the past we have seen what appear to be biased choices of experts commenting on ME/CFS matters. Nonetheless, proving that there was bias was always tricky.

Now we know there was bias. The lady in charge has made it clear that she is evangelically biased in favour of the BPS researchers. So biased that she has to let off steam in a book and even compare the other side to Nazis.

 

Can anyone explain to me how Amazon works? On Amazon.co.uk the only review visible is mine at one star, yet it says 75% of reviews are 5 star. On Amazon.com there are no reviews but it still gets five stars. I cannot see a review from Trish.