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United Kingdom: Science Media Centre (including Fiona Fox)
- Thread starter Esther12
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Hoopoe
Senior Member (Voting Rights)
Re. the reference to fascism. In Nazi Germany and Austria, some of the first victims of the regime were those disabled by chronic illness. That group likely included many survivors of the 1918 pandemic.
They even gassed a distant member of my family because he had no fixed employment.
They even gassed a distant member of my family because he had no fixed employment.
rvallee
Senior Member (Voting Rights)
100%.
Frankly, this pretty much makes the strongest case for why the SMC needs to be closed down, having completely failed its original mission. If the CEO of an organization that is in the promotion of scientific truth is so heavily engaged on the wrong side of it, that organization clearly has no reason to exist. Zero technical difference between this and taking HIV deniers' side. The only difference is politics.
Even more amazing is that almost everything she writes has been debunked, at the very least as wildly misleading. And she claims to write about hype, when PACE and the BPS ideology in general are entirely made out of it.
Given the right timing with LC, I think this deserves all the pushback it can get. It speaks ugly lies that will continue to influence, and block progress. Long haulers deserve to know why they are getting discriminated and lied to. They need to know that public money was misused to do so. And the public needs to understand why their leaders are failing them. Or more accurately, why there are no actual leaders on matters of public health and medicine, only self-interested bureaucrats and ideologues like Fox and Wessely.
From what I can see (and I was thinking was there a regulator) they've nicely situated themselves to be technically a PR agency - so not governed as being 'news/media' like ofcom/press standards etc but also not technically marketing anything (? although they are - they are just marketing it to said media).
Where I would focus is noting their Mission:
"To provide, for the benefit of the public and policymakers, accurate and evidence-based information about science and engineering through the media, particularly on controversial and headline news stories when most confusion and misinformation occurs."
and their 'Our Independence' section/claims:
"The independence of the Science Media Centre is critical to the work we carry out. We do not have any specific agenda other than to promote the reporting of evidence-based science, and are completely independent in both our governance and funding."
In that one it would seem they have used their 'governance' as the main reason they are independent, same with funding. So all those on governance, including the advisors are the ones providing that screen for claimed independence. If the individual running the centre is not being strictly 'governed' but instead saying thanks for your thoughts and doing her own thing, then technically the 'our independence' section should be profiling her.
Anyway, technically the issue isn't necessarily what they are doing, but the claims on their own website of who they are and what they do conflicting with what they actually do ie misinformation in itself. As others have said the book is interesting in making clear where her allegiances and opinions lie (even if she has convinced herself they are facts), and contains misinformation - which is an issue in relation to their own standards/brand/reason for being?
Where I would focus is noting their Mission:
"To provide, for the benefit of the public and policymakers, accurate and evidence-based information about science and engineering through the media, particularly on controversial and headline news stories when most confusion and misinformation occurs."
and their 'Our Independence' section/claims:
"The independence of the Science Media Centre is critical to the work we carry out. We do not have any specific agenda other than to promote the reporting of evidence-based science, and are completely independent in both our governance and funding."
In that one it would seem they have used their 'governance' as the main reason they are independent, same with funding. So all those on governance, including the advisors are the ones providing that screen for claimed independence. If the individual running the centre is not being strictly 'governed' but instead saying thanks for your thoughts and doing her own thing, then technically the 'our independence' section should be profiling her.
Anyway, technically the issue isn't necessarily what they are doing, but the claims on their own website of who they are and what they do conflicting with what they actually do ie misinformation in itself. As others have said the book is interesting in making clear where her allegiances and opinions lie (even if she has convinced herself they are facts), and contains misinformation - which is an issue in relation to their own standards/brand/reason for being?
Jonathan Edwards
Senior Member (Voting Rights)
I could write directly to Riley and Viner as concerned academic colleague (being likened to the SS).
Lou B Lou
Senior Member (Voting Rights)
SMC Mission: "To provide, for the benefit of the public and policymakers, accurate and evidence-based information about science and engineering through the media, particularly on controversial and headline news stories when most confusion and misinformation occurs."
But it was the SMC that created the 'controversy' and the headlines, the SMC itself was the conduit for misinformation on PACE and for the smearing of the patients.
But it was the SMC that created the 'controversy' and the headlines, the SMC itself was the conduit for misinformation on PACE and for the smearing of the patients.
JemPD
Senior Member (Voting Rights)
i thought that, but i just tried to leave a star rating without an actual worded review, (on another item i bought) to test if it was possible... it wouldnt let me do it kept highlighting that i needed to write a headline/review, wouldnt let me submit with just the star rating, so i dont know how they can have 5 star ratings with only 1 review, unless the reviews are being moderated but the star ratings go straight up before the actual review is added.
Edited - for sense
Last edited:
Link to Amazon page for the book
You can rate reviews as helpful or otherwise, with highly rated reviews featured on the main page. Currently, only Jonathan's review is visible to me.
You can rate reviews as helpful or otherwise, with highly rated reviews featured on the main page. Currently, only Jonathan's review is visible to me.
Esther12
Senior Member (Voting Rights)
May be the one to have done some CFS papers?
A paper with Hotopf: https://pubmed.ncbi.nlm.nih.gov/15469945/
One with Gregorowski: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1719984/
I don't think a complaint to the SMC is a worthwhile idea. Some careful questions might get some useful information?
The publishers blurb includes the usual supportive quotes from famous people
Paraphrasing Justin Webb from the BBC seems to think this is how to talk about science
Spiegelhalter says there are some compelling stories
Al Khallili says something….
perhaps they should all be questioned whether they agree with the nazi reference
Paraphrasing Justin Webb from the BBC seems to think this is how to talk about science
Spiegelhalter says there are some compelling stories
Al Khallili says something….
perhaps they should all be questioned whether they agree with the nazi reference
Yes, thank you @Trish.
re SMC: I find the whole concept of a single authoritative source of scientific 'truth' repugnant and disturbing in the extreme. I agree that the SMC, as both a fact and a concept, should be discarded permanently.
I don't know about. A failure to address properly any issues raised wouls be damaging for them. We cannot expect major breakthroughs but the strategy of "bite and hold" has effects.
Especially when repeated from different angles.
Agree and the written highlighting of issues is important as it negates deniability under claims of 'we somehow didn't know' if there is written evidence of it being simply and straightforwardly pointed out to those individuals. Many in senior positions prefer not to be copied in on emails or whatnot because the 'distance from things' whilst technically not an argument is something many commonly prefer to hide behind because they can then point to the 'rogue employee, had no idea' idea.
Bit harder whether you've publically been copied in on written information sent straight to you on a set date, and you've then chosen whether or not to do anything about it - from a fully informed position.
MSEsperanza
Senior Member (Voting Rights)
Agree with @Esther12 .
I think writing to the SMC board and advisory board would be highly worthwhile.
Not sure about a complaint to the SMC however. What would it aim at?
The book isn't a publication of the SMC and I think they didn't comment on it either (?).
Also, the SMC recently seems to have changed at a bit with respect to commenting research into ME/CFS.
But from the comments here it seems clear that Fiona Fox' account of their handling of the ME/CFS 'controversy' isn't accurate and she even git the latest parts of the story about the NICE guideline committee wrong (at which stage some members resigned and why.)
So I think there could be two different goals:
1) Writing to the publisher to request a) a correction of the factual errors and b) an amendment of the chapter's title (and maybe also an apology for the association of taking criticism seriously with supporting fascism and paving the way to mass murder)
2) Sending a copy of that the letter to the SMC, ask them how their chief executive's erroneous and offending account resonates with the SMC's constitution / goals and request that Fiona Fox should resign.
(Anticipated apologies for potentially bad wording
)
MSEsperanza
Senior Member (Voting Rights)
Addition to 2)
Also request an official inquiry into the SMC's handling of the ME/CFS 'controversy.
Also request an official inquiry into the SMC's handling of the ME/CFS 'controversy.
Jonathan Edwards
Senior Member (Voting Rights)
I thought I had remembered Viner's name in the ME context. It seems that he authored 3 papers for a period of no more than 2 years in 2004-5 shortly after being appointed to GOS following his doctorate period. Interestingly, the paper with Hotopf shows no link to childhood trauma or atopy. The paper with Gregorowski looks like a sort of in house audit of rehab treatment set up in the form of a 'soft' trial.
It would be interesting to know what Viner's position on the recent evaluation by NICE is.
Can you expand, @Esther12, on why a complaint is not worthwhile? I agree that a formal complaint format might be self-defeating but I was thinking more in terms of a formal expression of concern to those who provide SMC with advice.
One option would be for me to write to Eleanor Riley in person, but copying to the advisors as a whole, who include journalists associated with major outlets. I have interacted with Riley in the MRC search process and since Fox's chapter is a direct insult to NICE committee members, including her previous team members, Nacul and Kingdon, should ought to be as upset as people are here.
The counterargument might be that you can never make any impression on the beliefs of those who manipulate the establishment. But with people like Carol Monaghan and Ilora Finlay around I am not sure one should be so pessimistic.
The SMC is a registered charity. I don't know whether a complaint to the charity commissioners would be in order. I assume the SMC has a remit to provide accurate and scientifically literate information, that does not introduce bias by favouring one group or opinion over another on the basis of eminence or prejudice, and to do it in a way that does not promote discriminatory views of any disadvantaged group (such as pwME).
Points to raise might include:
The book makes public that the SMC director has maintained throughout her tenure a bias on ME/CFS which is demonstrably anti-science, or at least extremely one sided.
The director has encouraged, contributed to and amplifies in this book, the misrepresentation of legitimate scientific disagreement, critique and FOI requests as harassment, and as coming solely from anti science campaigning patients.
The director has encouraged and amplified the demonising of a whole patient community on the basis of alleged threats from a tiny number of unnamed individuals which should properly have been dealt with by police action or medically as appropriate. Instead the SMC not only encouraged, but this chapter makes it clear, themselves orchestrated, the public vilification of a patient community the vast majority of whom had no knowledge or involvement in the alleged threats.
As part of this ant science and anti patient campaign the SMC, under the leadership of it's director, has encouraged the conflating of alleged threats with legitimate critique ro crate a harassment narrative, and misusing this false harassment narrative to wrongly portray all criticism of ME/CFS research by Wessely et al as anti science militants on a par with violent animal rights extremists.
This has enabled the false claims of treatment efficacy and shoddy research of one group of researchers to be kept from proper scrutiny by portraying all critique as coming from antiscience patient activists.
This false one sided view of Wessely et al. as scientific heroes who can do no wrong, battling valiantly against the anti science forces of a powerful group of mulitant patients, is carried to extreme in the complete misrepresentation of the recent NICE guideline evidence review and decision making process which was not controlled or influenced by militant patients. The portrayal of NICE is both inaccurate and insulting to the scientists and clinicians and small minority of patients who undertook the review and wrote the guideline.
The choice of a wholly inappropriate chapter title, and heavily skewed and factually inaccurate content in the ME/CFS chapter in Fiona Fox's book makes explicit the antiscientific bias of the SMC on ME/CFS, and the false patient blaming narrative created and amplified by the SMC throughout her tenure.
The book makes explicit, and indeed takes obvious pride in, the SMC's anti science, anti patient discriminatory strategy throughout Fox's tenure as director. The SMC should therefore have its charitable status removed.
Points to raise might include:
The book makes public that the SMC director has maintained throughout her tenure a bias on ME/CFS which is demonstrably anti-science, or at least extremely one sided.
The director has encouraged, contributed to and amplifies in this book, the misrepresentation of legitimate scientific disagreement, critique and FOI requests as harassment, and as coming solely from anti science campaigning patients.
The director has encouraged and amplified the demonising of a whole patient community on the basis of alleged threats from a tiny number of unnamed individuals which should properly have been dealt with by police action or medically as appropriate. Instead the SMC not only encouraged, but this chapter makes it clear, themselves orchestrated, the public vilification of a patient community the vast majority of whom had no knowledge or involvement in the alleged threats.
As part of this ant science and anti patient campaign the SMC, under the leadership of it's director, has encouraged the conflating of alleged threats with legitimate critique ro crate a harassment narrative, and misusing this false harassment narrative to wrongly portray all criticism of ME/CFS research by Wessely et al as anti science militants on a par with violent animal rights extremists.
This has enabled the false claims of treatment efficacy and shoddy research of one group of researchers to be kept from proper scrutiny by portraying all critique as coming from antiscience patient activists.
This false one sided view of Wessely et al. as scientific heroes who can do no wrong, battling valiantly against the anti science forces of a powerful group of mulitant patients, is carried to extreme in the complete misrepresentation of the recent NICE guideline evidence review and decision making process which was not controlled or influenced by militant patients. The portrayal of NICE is both inaccurate and insulting to the scientists and clinicians and small minority of patients who undertook the review and wrote the guideline.
The choice of a wholly inappropriate chapter title, and heavily skewed and factually inaccurate content in the ME/CFS chapter in Fiona Fox's book makes explicit the antiscientific bias of the SMC on ME/CFS, and the false patient blaming narrative created and amplified by the SMC throughout her tenure.
The book makes explicit, and indeed takes obvious pride in, the SMC's anti science, anti patient discriminatory strategy throughout Fox's tenure as director. The SMC should therefore have its charitable status removed.
Russell Viner "loosely" headed up the CFS clinic at Gt Ormond St. My daughter was there in 2011/12. We never saw him. It was Anna Gregorowski who seemed to run the show. I suspect he may have been grateful when the clinic was moved to UCLH, where 2 or 3 other doctors are involved. However they seem to be under the influence of Anna Gregorowski. So when she says that letters supporting applications for benefits should not be written, the doctors obey.
The feedback I hear from parents is similar to that from Crawleys clinic re FII and social service threats etc.
Anna G is now chair of BACME.
Jonathan Edwards
Senior Member (Voting Rights)
That is a very well organised plan for a response @Trish. I wish I could think that clearly!
It is all a matter of tactics I suppose. I do have doubts that trying to influence the behaviour of Fox via the advisers may be a waste of time.
Maybe the best thing is to have lots of bad reviews on Amazon? That might be easier.
I haven't seen yours yet, which is odd.
It is all a matter of tactics I suppose. I do have doubts that trying to influence the behaviour of Fox via the advisers may be a waste of time.
Maybe the best thing is to have lots of bad reviews on Amazon? That might be easier.
I haven't seen yours yet, which is odd.