United Kingdom: Science Media Centre (including Fiona Fox)

Caroline Struthers said:
This is a nonsense sentence for a start. what is non-evidence based science?? Science generates evidence. Who writes this rubbish?! Cochrane write similar meaningless buzzword bingo sentences in their blurbs
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Indeed - any word such as 'accurate', 'critical', 'thinking', before the word reporting might at least have meant something

Without this I assume it means 'pushing studies of whatever quality at the media'

I think the phrase 'evidence-based' probably needs to be dropped by NHS and those who might have envisaged the phrase's creation to mean something, as how it has ended up being used has turned it into a rather empty cover-up encouraging those who hear someone say it to not question and critique whether something is robust or to look at the methodologically or compare it to the literature.

In the new law/tell of whatever they say assume the opposite with the 'we have no specific agenda other than' I find it intriguing this line is in there (doth protest too much: noone has 'no specific agenda' that is what Job descriptions, strategies and missions are and if you aren't savvy about clarifying it in these in order to avoid it then someone will be using you for theirs or you'll inadvertently be doing something).
 
Jonathan Edwards said:
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.:(
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The rating has just changed - so another review is probably imminent.

I did one last night, but it's not up yet. I suspect your review has triggered lots of red flags, @Jonathan Edwards , indicating that more moderation is required.

[eta: Please be aware that they are probably monitoring this forum]
 
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MSEsperanza said:
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 (?).
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It is actually quite an unusual situation - it is a book all about the SMC, from the person who runs it, who is still in post.

It is a situation where those reading it would legitimately assume that she at least had to get approval from what is technically her employer to keep her job as it is their reputation as much as hers. People get sacked for tweets and tiktoks about their jobs or opinions on company policy or happenings.

By her writing this - and due to this situation (of bringing disrepute laws etc) she has technically 'spoken for' the SMC in them at least explicitly agreeing to it or being OK with what is said, unless they say otherwise I (and many others probably) would assume.

You might on the odd occasion (I can't name one) get someone who owns their own company completely rather than just runs it writing a book and still being employed but that isn't the case either.
 
Trish said:
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.
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A complaint to the Charity Commission (CC) has to be tightly matched to both Charity Law and to CC guidance, and excepting where there is gross breach of governance, the CC acts not so much as a regulator but as a support agency for the improvement of the function of a Charity and complaints from the public are most frequently seen as opportunities for negotiated improvement in a given Charity not for regulatory action.

I agree that there may be grounds for a complaint but the objectives in making a complaint need to be clear from the outset - this isn't a case where there is a regulator that makes judgements of right and wrong and uses force of Law to address any finding of wrong, and complainants need to set their objectives on that basis. CC procedures would require, unless there are good reasons not to (whistleblower protection etc) that any complaint is first addressed to the Trustees, failure by the Trustees to act appropriately is then the focus of any formal complaint to the CC.

A complainant can write in the first instance to the CC to seek guidance on the matter of concern, to get anything substantive from the CC that concern needs to be referenced to the individual Charity's Charitable objects rather than to any broader complaint.

The two key areas in this case seems to me to be disability discrimination, which applies to most areas of Charity Law, and to bringing the Charity into disrepute, other aspects are more difficult to connect from book to author to organisation - the CC is unlikely to be concerned with either the book or the author, other than they are closely associated with the Charity.

My view is that a complaint is best pursued by an organisation, I wouldn't dissuade any individual from a making a complaint but it is something that will likely take a lot of work and patience to see through.

The other option is to simply go straight to the Trustees and complain about the obscenity of using the Martin Niemöller quote to denigrate disability campaigners.

*For non UKers - Charity in legal terms in the various nations of the UK refers to non profit organisations that have a specific legal status, it is also the only way for a non profit to be recognised in the tax system.
 
bobbler said:
It is a situation where those reading it would legitimately assume that she at least had to get approval from what is technically her employer to keep her job as it is their reputation as much as hers. People get sacked for tweets and tiktoks about their jobs or opinions on company policy or happenings.
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That is a very good point. It would be thought that the book would have to have been submitted to the board to approve its publication. I wonder what degree of formality there would have been. Perhaps there is a minuted decision somewhere.
 
Trish said:
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.
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Sounds like a good idea to me. It seems that in the end the Charity Commission was a key element in sorting out the Very Rev Percy/Christchurch thing, with them being particularly concerned about the amount of money being spent/use of funds for something that wasn't 'of benefit' to their mission (or something like that) because of the legal costs etc I think? Basically different choices in how things were handled would perhaps not have involved such ongoing large legal costs or liabilities etc

I haven't read the chapter, but there is a chance it is libel or defamation within it (the chapter title for a start giving an indicator of this, but naming individuals too and it goes on) - going by what happens when newspapers print misinformation about certain famous people that affect their reputation, this unquestionably is affecting the reputation and likely treatment of PwME (and potentially as you say individuals who work in certain areas).

And if so there is the question about whether it would only be libel/defamation from Fiona, or also the SMC (if they are technically supporting this whether directly signing it off or choosing not to distance itself from it).

EDIT/addition: in fact, again depending on what is in there, could there even in theory be the rather obscure theoretical (because I don't know what is written, accuracy, how it would reflect etc) possibility of libel or defamation or misrepresentation etc. of the SMC ? my poor brain there are a lot of different angles to get head around here what if wise..

The following site on self-publishing advice seems to be good: https://selfpublishingadvice.org/how-to-avoid-libel-and-defamation-as-an-author/
references from it:
"Libel law rightly protects individuals and organisations from mistaken, untruthful or unwarranted attacks on their reputation.

A person is libelled if a publication:
  • Discredits them in their trade, business or profession
  • Exposes them to hatred, ridicule or contempt
  • Causes them to be shunned or avoided
  • Generally lowers them in the eyes of society
The test of libel used by the courts is what a “reasonable reader” is likely to take as their natural and ordinary meaning, in their full context – what you intended as the author or publisher is irrelevant. If you write something that cannot be substantiated, the credibility of your site, organisation or cause comes into question. Note also that in English law, the burden of proof in a libel case lies with the author or publisher. "


The difference with this book being that rather than them hiding behind claims of 'not being publishers but promoters' or whatever silliness, this is a published book. So she seems to have stepped into an arena where potentially noone flagged to her that her same old tricks in a different context ...? From a quick scout on the internet:
"even drama and fiction can be defamatory if they damage someone's reputation"

"You are also liable if you publish a defamatory or libellous statement made by someone else (on your blog, for example, or in your book) even if you quote them accurately."

"Defamation act 2013
  • Section 1 – Serious harm. ...
  • Section 2 – The defence of truth. ...
  • Section 3 – The defence of honest opinion. ...
  • Section 4 – The defence of publication on a matter of public interest. ...
  • Section 5 – A defence for operators of websites"
 
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Any chance someone could contact David Black about this book? (might be good also from a legal perspective).

see his series of blogs
https://www.scottishlegal.com/articles/orthodoxy-on-trial-iii-did-flawed-science-beget-flawed-law

thread here
https://www.s4me.info/tags/david-black/

The propaganda war which characterises the ME/CFS controversy should concern us all. With the Science Media Centre as a de facto ‘black-ops’ hub, the UK media has overwhelmingly supported the psychogenic orthodoxy, portraying ME/CFS sufferers and sceptical physicians and researchers as ‘activists’ on a par with animal rights campaigners and anti-vaxxers. With such headlines as “It’s safer to insult the prophet Mohammed than to contradict the armed wing of the ME Brigade” and “How the ME zealots tried to terrorise me” this was hardly the Fourth Estate’s finest hour.
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Nor was it only the tabloids following this line. The medical profession’s journal of record, The Lancet, was also in thrall to the orthodoxy. Editor Richard Horton had peremptorily dismissed the psychogenic model’s critics as “a fairly small, but highly organised, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients”.

In 2015 Mr Horton was sent an open letter critical of PACE by seven leading US and UK scientists; he declined to respond. Three months later the letter was re-sent, this time with 43 signatures, but he declined to publish it it. A year later much the same letter, this time with 102 distinguished signatories, and endorsed by 27 ME/CFS charities from 17 countries, was sent to the Journal of Psychological Medicine, and finally published.
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CRG said:
A complaint to the Charity Commission (CC) has to be tightly matched to both Charity Law and to CC guidance, and excepting where there is gross breach of governance, the CC acts not so much as a regulator but as a support agency for the improvement of the function of a Charity and complaints from the public are most frequently seen as opportunities for negotiated improvement in a given Charity not for regulatory action.
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Thanks. I agree if a complaint is to be made to the Charity Commission, it should be done by an organisation. I really just floated it as a possiblity. I don't have the energy to pursue it myself, but maybe someone else will do so.
 
CRG said:
The other option is to simply go straight to the Trustees and complain about the obscenity of using the Martin Niemöller quote to denigrate disability campaigners.
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That would be my view. Keep the matter clear and simple, so they cannot waffle on and say nothing. Make them either defend the words or say that they were written in a personal capacity and that they do not represent the views of the SMC. That would be an interesting conundrum for them.
 
chrisb said:
That would be my view. Keep the matter clear and simple, so they cannot waffle on and say nothing. Make them either defend the words or say that they were written in a personal capacity and that they do not represent the views of the SMC. That would be an interesting conundrum for them.
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Yes, I think anything that focuses on quietly informing those involved at this stage and seeing whether this is 'inadvertent/ lack of oversight' or agreed with etc. finding out what they feel on it right now and making sure they are aware is insightful I think.

I was just looking up to see who the publisher is (which seems to be Elliot and Thomson who describe themselves as small) because I don't know the process for checking for these sorts of things, and wanted to see if it was self-published etc. given how bold the chapter title seems you'd guess it was extensive etc?
 
bobbler said:
Sounds like a good idea to me. It seems that in the end the Charity Commission was a key element in sorting out the Very Rev Percy/Christchurch thing, with them being particularly concerned about the amount of money being spent/use of funds for something that wasn't 'of benefit' to their mission (or something like that) because of the legal costs etc I think? Basically different choices in how things were handled would perhaps not have involved such ongoing large legal costs or liabilities etc
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I am not a lawyer but:

It's important to distinguish between the actions of the Trustees - who in Law are "the Charity" - and the actions of those who work for/operate the Charity. In the Percy case Christ Church Oxford: Dean Martyn Percy cleared for the fifth time, the Trustees were directly involved in wasting the Charity's resources, and even then the Commission acted with urgency of a sloth on tranquillizers.

The issue in this case comes down to how the SMC Trustees have responded to a book about their Charity written by the CEO of the Charity - if the Trustees signed off on the project, had editorial oversight etc, or formally ceded that responsibility to their CEO then they may well have failed under Charity Law. However if the book is a personal project of the employee, and if there's been no process of internal approval, editorial oversight etc then the issue comes down to how the Trustees respond "after the fact of publication" - that is how do the Trustees respond to any external complaint about their association with a book which denigrates disabled people and misrepresents facts about medical science etc.

Also re: defamation - that's a route best avoided, unless one has deep pockets and can access very expensive lawyers. The target for that would primarily be author and publisher, not the SMC. There's no provision for group defamation in UK jurisdictions, although it can conceptually be used where a group is covered by anti discrimination legislation - disability etc but the action has to be under anti discrimination not defamation.
 
As @CRG points out, the right route here is probably a query to the SMC's advisory board about SMC's response to the views expressed by its Chief Exec.
- Does the SMC agrees with Fox's characterisation of reputable scientists with whom Fox disagrees as analogous to Nazi collaborators?
- If not, does the SMC think this is an appropriate way for its Chief Exec to refer to reputable scientists in a book about the SMC, even if she is doing so as an individual and not on behalf of the SMC, given that the SMC depends on the confidence and support of the scientific community?
- In the case of issues where there is disagreement among scientists, is it the usual practice of the SMC to take sides in that dispute without regard to the verdict of mainstream, widely respected consensus-building bodies like NICE?
- If not, can scientists have confidence in the SMC when its Chief Executive in her work outside the SMC is advocating in trenchant and political terms in support of views held by a specific group of scientists and dismissing a scientific consensus forming in the opposite direction? Isn't that precisely the kind of tendentious advocacy the SMC was intended to counter?
 
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