United Kingdom: Science Media Centre (including Fiona Fox)

Ah, I see that Nellie was commenting on your transcript here @Trish.
Mine took a time to appear and if mine appears I see no reason why yours shouldn't!

 

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.

 

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?

 

I could write directly to Riley and Viner as concerned academic colleague (being likened to the SS).

 

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.

 

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

 

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?

 

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.

 

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.

 

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 )

 

Addition to 2)

Also request an official inquiry into the SMC's handling of the ME/CFS 'controversy.

 

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.

 

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.

 

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.