United Kingdom: Science Media Centre (including Fiona Fox)

[Lucibee]

Lucibee: "She says she had some kind of post-infection fatigue after a trip to Zaire in her thirties. Spent weeks in bed; going downstairs too exhausting; kept being asked whether she was depressed - adamant that she was not; emotional lability etc. Eventually started to get some energy back "after numerous frustrating and inconclusive visits to different doctors." Took about a year to get back to normal."

That's nothing like what Fiona Fox wrote about ME in (circa) 1996.
Did she go to Zaire, get ill, then take a year to get back to normal sometime between 1996 and 2001, when she became Director of the SMC?

@Lucibee - I do suggest you read this internal RCP 'Contribution to our Tasks and Methods' by Fiona Fox in which she makes it clear she thinks ME is something only suffered by the likes of her "old friend Carol", people who have given up on their ideals and given up on hope, and become pathetic.

fiona_fox_ME_RCP_with_links.pdf (dropbox.com)

Yes, I saw that - via @JohnTheJack 's blog. I wouldn't read too much into it. I suspect it's written before her trip.

I don't think she thought she had ME herself, just something like it - in the same way that many are now denying having long covid, even though they have experienced post-covid symptoms for months, if not a year or more. To many, ME is something you don't recover from - she recovered, so it clearly wasn't ME to her (unless it was helped by a dose of CBT/GET!). None of it makes any sense. Beware of trying to find any kind of logical consistency. Beware too of getting drawn into the whole RCP narrative, or getting distracted by spurious quotes from holocaust poems. The reason it is there, front and centre, is to draw attention away from the contents of the chapter, and as a dog-whistle to her final paragraph.

 

[Lucibee]

Just the latter I think.

It is not surprising that there are lots of nice reviews. These are professional mutual backscratchers.
More or less the circle of the Self-righteousness Marketing Company.

The OH came up with a good one: Simon's Media Chums

 

[Lou B Lou]

And the hoax phone call made by Fiona Fox (pretending to be a journalist) to MP Jim Devine's office manager.



Guardian 2010:

'Employment tribunal hears of bizarre hoax phone call'

The director of Britain's Science Media Centre pretended to be a journalist investigating MP's staff expenses.'


'Few people who are familiar with the small pond that is science journalism in the UK will have failed to gulp on reading about the ex-Labour MP Jim Devine and the unthinkable bullying he unleashed on his office manager, Marion Kinley.

Devine, who was an MP in Livingston, Scotland, before being caught up in the expenses scandal last year asked an acquaintance to make a fake call to Kinley and pretend to be a journalist investigating her financial affairs. The story gets darker with every step and you can read more about it here. Devine has since been ordered to pay Kinley £35,000.

Though appalling from the off, it was not the top line that shocked many of my colleagues most. What came as a surprise was the revelation far down the story that the fake call in question was made by Fiona Fox, head of the Science Media Centre in London, a prominent venue for press conferences on all matters scientific and medical. Otherwise articulate people who read the story struggled to say more than three letters: WTF?'


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

 

[bobbler]

Yes the SMC created a fake controversy ("death threats & dangerous militants attacking science because of bigotry") to distract from the real one. The real controversy being that PACE showed CBT/GET did not work, and PACE was meant to be the definitive test for a specific medical-political approach to ME/CFS. Which meant that a lot of money had been put into an approach that was promised to work but actually had no effect, that the denialism of ME/CFS is wrong, patients had been right all along and had been mistreated by the medical establishment, government agencies and the insurance industry.

With the new NICE guideline it seems that the PACE trial group have lost, maybe definitely. If the UK's health minister is competent in changing things, it will be definitive. Long covid is helping people accept that ME/CFS is real and making it a lot harder to be persuaded into believing the denialism.

hmm, I'm starting to think having read her manifesto thingyme on dropbox that, as has been the case, ME was a stepping stone for the 'all Long term conditions' and more given that the discredited ME research of PACE is what is used as the evidence for them having branched out into that broader MUS and IAPTS. Clearly she's never liked ME, but the next column onwards is all about the minds of people outside 'the Party' vs those within it and suggestions related to that.

Putting aside whether that means ME will keep getting dragged into these new (and I suspect they will be ever-changing to keep ahead of the bailiff so to speak) categories, they've created a massive new state system running CBT for all..

Has anyone checked some of the individuals who are pushing/rolling out these larger, harder to roll back areas like IAPTS, social prescription groups, or whatever might have sprung up directly from the back of this long campaign?

 

[Lucibee]

There is an interesting passage on how she helped the poor PACE chaps to counter the suggestion that PACE and XMRV were equally bad.

That was quite interesting, because it is about Amy Maxmen's piece here: https://www.nature.com/articles/d41586-017-08965-0

SMC don't get to police what other journals write about a particular issue - or rather, it's clear that they think they do!

It's one thing to help scientists to communicate effectively with the media and the public. It's quite another to be trying to contain and dictate the message across all media.

 

[Arnie Pye]

But what did she mean by the following phrase?

"(This weekend there are 100s of thousands of women in a state of anxiety about whether their chosen pill will kill them. The women on these pills in the Party will be more likely to think "that's a good angle to sell someone Get a Life tickets!)"

Throughout my life there have been occasional "panic, panic, panic" stories in the media about the birth control pill being dangerous or deadly. Also, there have been similar stories about treatments for breast cancer. So, I suspect one of those is being referred to, but I'm only guessing.

 

[Hoopoe]

Putting aside whether that means ME will keep getting dragged into these new (and I suspect they will be ever-changing to keep ahead of the bailiff so to speak) categories, they've created a massive new state system running CBT for all....

I'm sure the masses of people who falsely believe they are disabled by an illness will very soon see the light and recognize they're disabled only by their own negative attitude.

 

[chrisb]

... and that will be the end of history.

 

[Jonathan Edwards]

SMC don't get to police what other journals write about a particular issue - or rather, it's clear that they think they do!

Yes, I suspect some of my journalist friends will be chortling into their claret over this book. Last time I had lunch with Jerome Burne and James LeFanu SMC did not rank highly on the credibility stakes. Maybe that is why Fox has to bang her own drum - nobody else ain't going to bang it for her.

 

[Lucibee]

And the hoax phone call made by Fiona Fox (pretending to be a journalist) to MP Jim Devine's office manager.

Guardian 2010: 'Employment tribunal hears of bizarre hoax phone call'
The director of Britain's Science Media Centre pretended to be a journalist investigating MP's staff expenses.'

"horribly naive" springs to mind - https://deadlinescotland.wordpress....ck-joke-left-office-manager-sick-with-stress/

Why would someone who is CEO of a major media org/charity agree to make a hoax call for someone they barely know? And then leave a trail of emails in their wake that the poor office manager has access to? It's beyond belief!

 

[bobbler]

"horribly naive" springs to mind - https://deadlinescotland.wordpress....ck-joke-left-office-manager-sick-with-stress/

Why would someone who is CEO of a major media org/charity agree to make a hoax call for someone they barely know? And then leave a trail of emails in their wake that the poor office manager has access to? It's beyond belief!

hmm when the second email she jammed a 'I feel so bad I did that' into the bottom of came up I thought that was no accident, she knew full well it would be read. What she was doing making the call only she knows

 

[bobbler]

If you want to go down the RCP rabbit hole - there's this: https://rcpwatch.wordpress.com/ - though I'd suggest it's best avoided. These are people who have actively written themselves into their very own conspiracy theory, actors playing actors etc. The only way to deal with them is to stand well back and only if absolutely necessary make a swift intervention and then step away - all else is the route to their madness.

I just thought it seems unusual even for this sort of thing to have aliases doesn't it?

 

[Adrian]

It's one thing to help scientists to communicate effectively with the media and the public. It's quite another to be trying to contain and dictate the message across all media.

Helping scientists communicate effectively with the media is done through media training. Things like how to give effective sound bites that journalists will pick up on and how to explain things in a succinct and understandable way. Sometimes its useful to have a PR person explain what issues journalists are looking to pick up on and write on so that if these are not the point they can be avoided. However having an organization seeking to control the narrative given to journalists is not helping them get the message across.

 

[MEMarge]

Disappointing to see that it is one of Nature's 5 Top "Science" books this week:
https://mail2.virginmedia.com/appsuite/#!!&app=io.ox/mail&folder=flhawlw01QOKSZ
Features & opinion
Five best science books this week
Andrew Robinson’s pick of the top five science books to read this week includes a sparkling survey of female dominance in the animal kingdom, an absorbing memoir that explores science’s biggest media controversies and a journey with trilobites.


Beyond the Hype

Fiona Fox Elliott & Thompson (2022)

It is 20 years since journalist Fiona Fox set up the influential Science Media Centre in London, to persuade more scientists to engage with the media. This absorbing, detailed book is her memoir of that period — not, as she makes clear, an “objective record”. Separate chapters deal with controversies such as “Climategate”, “Frankenfoods”, the politicization of science, sexism in research and how the current pandemic epitomizes an “age-old dichotomy” between the need for simple public messaging and the messy complexity of science

 

[chrisb]

I may be being even slower than usual, but I have been trying, and failing to deconstruct the "First they came for the communists" line, and its symbolism.

Given the acknowledged reference by Fox to the RCP the obvious interpretation is that we are the "they" and she is the "communists", -the suitably rather paranoid communists.

But that does not work. The tenor of her message should be, and is that first we came for the psychiatrists and researchers. SW's Elliot Slater lecture was in May 1994. He had been barking on about the subject for some years before that.

She seems to be trying to make it all about her.

Perhaps I misunderstood.

 

[John Mac]

I had a similar thought. I wondered how the vetting for the MOD had gone, given his acquaintances, and concluded that it had probably already gone.

And don't forget it was his "work" for the MOD that got him his knighthood.

 

[Lucibee]

I may be being even slower than usual, but I have been trying, and failing to deconstruct the "First they came for the communists" line, and its symbolism.

I think what she is trying to say, is that if they don't do anything about ME activism, it will spread to all sorts of other areas. Slippery slope...

She says as much further on in the chapter:

My colleagues and I feel that there is a wider principle at stake here. If a group of scientists and a body of evidence can be silenced or discredited in this way, what's to stop other activists doing the same with other findings they don't like? The answer is that there is nothing we can do to stop them trying - but we can, as a scientific community, think about how we can defend researchers, evidence and the scientific process from such attacks.

and reiterated at the end:

Thankfully the situation with ME/CFS is extraordinary and rare. But the principles involved are not. My real worry is that the collective failure of the medical research establishment to step into this row to publicly support the scientists, defend a body of evidence and argue that we need all kinds of research to tackle this devastating illness will pave the way for the same thing to happen in other areas of science. Substitute the words ME/CFS in this chapter with other contested issues like vaccines, climate change, autism, statins and you can see the dangers. We need scientists to feel able to discuss their disagreements in the media free from fear. Sadly this story feels like the cautionary tale of this book. The one where everybody loses.

 

[Jonathan Edwards]

and reiterated at the end:

I think my journalist friends might do the nose trick with their claret reading that bit.

 

[Jonathan Edwards]

I think what she is trying to say, is that if they don't do anything about ME activism, it will spread to all sorts of other areas. Slippery slope...

I think that must be the implication.
So ME activists are nazis. Of course if they really were suffering from a biopsychosocial condition then psychiatrists should be sympathetic to their unhelpful beliefs about them (as they would be for paranoid schizophrenics for instance) so it would not be in their interest for journalists to say things like that. But then...

 

[chrisb]

Thanks for the additional information @Lucibee . I presumed it must be something other than my interpretation. However it does seem an unusually clumsy piece of writing, regardless of any issues of taste, to leave the issue open,especially when she alluded to, and pointed out, the other interpretation.