United Kingdom: Science Media Centre (including Fiona Fox)

Article by Philip Ball in the Lancet:
Improving the engagement of scientists with the media
After publishing an account of a field of physics accused of hype when some high-profile claims were retracted, I was contacted by one of the field's critics. He had declined to be interviewed for my article, but nonetheless believed that it gave too prominent a voice to those with whom he disagreed. When I explained that I had given him a chance to put across his concerns directly, he replied that even if he had granted an interview, all I would have done is “pick the quotes that make the most sense to you”. As I explained to him, that is precisely what the job of a science reporter entails. Exchanges like this are—for this science writer—extremely rare. Only if one ventures to report on other academic turf does one truly come to appreciate with what extraordinary generosity, patience, and clarity scientists typically share their expert advice. Most recognise that, while reporters want to see science communicated as accurately and even-handedly as possible, journalism creates constraints that are not always fully aligned with those goals. They are usually grateful that a reporter has shown interest in their work and wants their help to describe it accurately.
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https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)01344-7/fulltext

I haven't read the full article (you need to set up an account), but if you go to the entry on science direct it comes up with
Improving the engagement of scientists with the mediaFiona Fox, Beyond the Hype: The Inside Story of Science's Biggest Media Controversies, Elliott & Thompson (2022), p. 256, £16·99, ISBN: 9781783966172
https://www.sciencedirect.com/science/article/abs/pii/S0140673622013447

so it definitely at least references the book.
 
I came across this article in Google News and it showed me a short part of a sentence (relevant to the keyword I used):

"Another example relates to the activism of chronic fatigue syndrome (myalgic encephalomyelitis or encephalopathy) campaigners, whose fury at..."​

So it's probably "worth" checking out the whole article...
 
The section that mentions ME is the second half of a paragraph, and doesn't say much. The full quote is:

"Another example relates to the activism of chronic fatigue syndrome (myalgic encephalomyelitis or encephalopathy) campaigners, whose fury at being ignored for so long by the medical profession could be misdirected at anyone trying genuinely to understand the condition. “This toxic environment has continued to have a chilling effect on those actively involved in research”, writes Fox, “and means that the wider public and patients with the illness are not hearing from experts.” "
 
Inserting the issue of SMC reporting of ME into a paragraph that early on includes the words "violent reprisals" (in relation to animal rights activists) and the word "fury" to describe responses of ME sufferers to the outright intensive disinformation about ME and smearing of the patients - that's not an objective appraisal of the actions of Fox and the SMC by Philip Ball. That's re-igniting the debunked gaslighting ideology of ME and the smearing of ME sufferers .



Philip Ball:

'But there are other reasons for the reluctance to engage. During the era of animal-rights extremism in the late 20th century and early 2000s there was an understandable fear among researchers of violent reprisals. Fox did a splendid job of persuading scientists that only by coming forward to explain what animal testing for research really entailed and what motivated it, rather than leaving the stage clear for the misinformation of extremists, could public opinion be shifted and such research normalised (as well as soberly debated). “By talking openly about the use of animals in research and establishing it as a normal part of science”, says Fox, “we have so successfully defused this once highly controversial topic that journalists now show little to no interest in this subject”—in this case, a good thing. Another example relates to the activism of chronic fatigue syndrome (myalgic encephalomyelitis or encephalopathy) campaigners, whose fury at being ignored for so long by the medical profession could be misdirected at anyone trying genuinely to understand the condition. “This toxic environment has continued to have a chilling effect on those actively involved in research”, writes Fox, “and means that the wider public and patients with the illness are not hearing from experts.”



You can register with the Lancet to read the full article if you want to feel smeared all over again.
 
Kind of meta isn't it? That a book filled with hype by a propagandist who generated a lot of hype in bad faith is being appraised for its hype without anyone checking the claims, most of which have been fully debunked (and obviously make no sense anyway). All hype, no substance. Truly the title should have been "Behind the hype: Me, Fiona Fox".

As in these are people essentially reading a book that pretends to defend good science from someone who did the opposite of that, think of themselves as fairly smart for seeing through the hype and tsk-tsking in rhythm with Fox, purely out of hype filled with distortion and lies.

This is very much like the professional skeptics industry gushing over blatant pseudoscience like PACE, incapable of calling BS for what it is because they don't dare be the ones pointing out that not only is the emperor not wearing any clothes, this is basically the 3rd garment-free monarch, 3 whole generations of rubes marveling at non-existent clothes simply makes fools out of too many.

The scientific method is what science is all about, but it's only one part of doing science, there is a lot of politics before, during and after the scientific method. And that's when it's actually used, unlike with EBM where it's basically rejected explicitly because it gives results they don't like, and prefer their own method of basically presenting their own opinions as fact.
 
Trish said:
I've just checked Amazon and there are now some positive reviews of the book
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One of the five star reviews is by "Phil Stein". Looking at that user's review history I'm left thinking they are a sockpuppet account. Of the 7 prior reviews between 2013-16, two are for headphones, one for a lightsaber, one each for the "House of Cards" season 1 on DVD and a Red Hot Chilli Peppers single. But now:

***** "A ringside seat on how science makes the headlines"
 
Not sure if these minutes from the SMC's "CFS meeting 31.01.2013" have been posted yet, but link would need to be updated anyway.

Had stumbled across the document in a comment on Edzard Ernst's praise of Fiona Fox' book:

"[...] SMC meetings like this, the existence of which we only know about thanks to minutes being released via a terrifying FOI attack: https://citizen-network.org/assets/fullsize/595/minutes-science-media-centre-cfs.jpg "


https://edzardernst.com/2022/03/beyond-the-hype-20-years-of-the-science-media-centre/#comment-138355


(Just in case you're surprised by my anachronistic forum behavior: Trying to tidy up my drafts folder a bit, not able to catch up with current posts.)
 
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Katharine Cheston on Twitter:

"I've been part of this cruel dystopian world for over a decade now, but I'm still shocked and appalled at the fact that this was deemed an acceptable title for the third chapter of Fiona Fox's book, 'Beyond the Hype'. https://t.co/BJMldIpU6g "



Cyrus on Twitter:

"It would be funny if it weren’t so hateful. First Fiona Fox calls her book “Beyond the Hype” but a few pages into that chapter, she says she hasn’t dug into the matter and just asked her good ole’ pals. And then you now have a SMC trustee, Prof Kevin McConway, who says —" ...



... "the new NICE guideline is good. Just ridiculous all around."

 
https://journals.sagepub.com/doi/full/10.1177/09564748221121486c
Combustible material

Tim Radford
First Published September 2, 2022 Book Review
https://doi.org/10.1177/09564748221121486c

Volume: 33 issue: 3, page(s): 72-74
Article first published online: September 2, 2022; Issue published: September 1, 2022

https://journals.sagepub.com/doi/full/10.1177/09564748221121486c

Includes:
Some scientists involved in ME, also known as myalgic encephalomyelitis or chronic fatigue syndrome, had their lives made miserable by invective and even death threats from a small group of activist sufferers.
 
Tim Radford in the British Journalism Review:
Some scientists involved in ME, also known as myalgic encephalomyelitis or chronic fatigue syndrome, had their lives made miserable by invective and even death threats from a small group of activist sufferers.
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Don't have access to the book review -- does the author differentiate between the death threats and the justified criticism?

Does he mention the evidence about the actual death threats and whether they were issued by an actual "group of sufferers" [with ME]?

-- Not able to word now so quote ME-pedia with the relevant references:

"No evidence of anyone with ME/CFS in relation to these matters being charged by the police/law enforcement or convicted in the Courts with harassment and death threats has come to light, despite a number of ME advocates attempting to find evidence, including filing Freedom of Information Act requests to public bodies.[32][71][71][72][73] "

Does Tim Redford mention that millions of patients with a serious chronic illness had their lives made miserable by a network of activist scientists' bad research and journalists' malpractice, including propagating ineffective and harmful interventions and misrepresenting justified critique and FOI requests as harassment?

Some of those scientists and their friends also tried to intimidate other scientists whose work that supported the patients' criticism.

https://me-pedia.org/wiki/Intimidation_and_bullying_of_PACE_trial_critics

Sorry, don't remember and not able now to check: I wonder if patient organizations had issued a letter condemning death threats and abuse against scientists involved with ME at the time when actual threats were happening?

If not, could it still be helpful to issue such a letter together with a fact check about the exaggeration and misrepresentation of harassment being made?

I realize it's a difficult situation, but I condemn death threats and actual harassment and if that needs to be spelled out because those threats happen to be targeted at some people involved in research and healthcare related to the illness I happen to suffer with, and people with authority keep associating me and my critique with those threats, then I would welcome if organizations that represent people with ME gave me a voice.

(Too sick ATM to be of any help myself with this regard :( )
 
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