United Kingdom: Science Media Centre (including Fiona Fox)

Relevant since ME/CFS is generally categorized as a "functional something or another", lots of pwME have been misdiagnosed with FND, and the same is happening with Long Covid:
Professor Robert Howard said:
I’m 100% in support of the arguments made here and have been disappointed by the unconvincing evidence advanced to suggest that functional disorders are anything but psychologically driven.
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I guess "anything but psychologically driven" doesn't mean "all in the mind", though? There's no point giving these people the benefit of the doubt, decades of building lies only works to support the notion that this is what they believe. We even have their own words admitting that they settled on functional because it makes it easier to lie to patients, and it looks like some are getting bored of the whole strategy and would rather say the quiet part out loud.

The comment is about this paper: Functional Neurological Disorders: Challenging the Mainstream Agnostic Causative Position 2024 Scamvougeras and Castle.
 
Sean said:
Yep. The internal inconsistency alone should be enough to sink that ship forever, let alone the external inconsistency with the actual evidence.
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I always assumed that Wessley and co. genuinely believe in their theories and that they are correct. But seeing this number of inconsistencies in their own theories almost makes me think they might have malicious intent. (I’m sure they don’t but it is not hard to imagine).
 
see
https://www.s4me.info/threads/nice-...s-now-been-published.6197/page-23#post-117533

they changed their definition of recovery (P. White):

"One recent focus of criticism has been whether CBT and GET can actually bring about recovery or remission from the illness, not just reduce the symptoms. And by recovery we mean recovery from a patient’s present episode of illness – which is not necessarily the same as being cured, as someone might fall ill again.

To address this we did another test on the data, and found that 22% of people could be considered as recovered with either CBT or GET. Though not a large proportion it was about three times more than the recovery rates achieved by the other two treatments. Other studies showed similar proportions recovering after CBT."
 
Peter White said:
whether CBT and GET can actually bring about recovery or remission from the illness, not just reduce the symptoms
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Neither can even do that. That's how clownish and scammy this whole thing is. We keep hearing about how the only thing doctors can do about LC or ME (or POTS, or IBS, or whatever) is to treat or reduce symptoms, but they can't even do that, and CBT and GET obviously don't either. It's so ridiculous how decades and millions of lives have been wasted arguing over how many twirls or arabesques or whatever can angels dancing on hairpins do.

In fact in the case of GET it literally makes them worse. That's how insane this all is. They're talking about imaginary gains while in real life it's real losses.
 
rvallee said:
That's how insane this all is. They're talking about imaginary gains while in real life it's real losses.
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The 2002 Australian Guidelines had their fair share of the usual problems, and are now way out of date. But one thing they did get right was this very important statement at the end of the medico-legal issues section:

In the absence of evidence of malingering, speculative judgements about unconscious motivation should be avoided. The psychoanalytic concept of “secondary gain” has been misused in medicolegal settings and does not rest on a solid empirical base. In evaluating patients with CFS, hypothesised secondary gains should be weighed against manifest secondary losses. The notion of “abnormal illness behaviour” is contentious, and the term should not be used as a diagnostic label. [page 31]​

Med J Aust. 2002 May 6;176(S9):S17-S55.
PubMed listing
PDF (auto download from MJA site)
 
Sly Saint said:
"One recent focus of criticism has been whether CBT and GET can actually bring about recovery or remission from the illness, not just reduce the symptoms. And by recovery we mean recovery from a patient’s present episode of illness – which is not necessarily the same as being cured, as someone might fall ill again.
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This is one reason the "recovery" paper is fraudulent. The protocol said "recovery." The paper is called "recovery." In the text, they acknowledge they are talking about "recovery" from the "present episode of illness." There is a word for that. it's called "remission." Remission and recovery are not synonyms. They did not include this caveat in the protocol and it is disgraceful they were allowed to change the definition of "recovery" in the paper itself. This is a paper about purported "remission." Has little to do with "recovery."
 
Cheshire said:
They're not giving up yet...
Don't know why they're doing that right now. Could it have something to do with the paper to be released in the next days? (meaning they're freaking out?)

http://www.sciencemediacentre.org/cfsme-the-illness-and-the-controversy/
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Just looking at this thread and wanted to read the factsheet, but the link is now dead.

Stewart said:
This 'factsheet' ("...also available as a pdf for ease of download")
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Would anyone by any chance be able to help with a PDF? Thanks.
 
With the byline: Fiona Fox is chief executive of the Science Media Centre and an honorary fellow of the Royal Society.

Fiona Fox writing in Research Professional News: If the Royal Society expels Musk, it could harm trust in science

So why am I not immediately signing the joint letter or, as a fellow myself, supporting those who are calling for Musk’s expulsion at a society meeting on 3 March that has been called to discuss the matter?

My caution stems from something I have been thinking about for years—should science get involved in politics?

I don’t mean should scientists work in government, advise politicians and lobby for evidence-based policies. I think they should, and the UK’s system of scientific advice for government is rightly the envy of the world.

What I mean is: should scientists, in their capacity as scientists rather than private citizens, advocate for particular political policies and express support for specific political parties?

I followed this debate for years without deciding which side I was on. That changed last year, after I was privileged to be made visiting professor of science communication at Heidelberg University in Germany.
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In a nutshell, my argument is that the public trusts scientists more than politicians because it believes they are impartial and objective experts. Scientists who stray beyond the evidence and become campaigners or advocates for particular policies risk losing that trust.
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In a nutshell, my argument is that the public trusts scientists more than politicians because it believes they are impartial and objective experts. Scientists who stray beyond the evidence and become campaigners or advocates for particular policies risk losing that trust.
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I can’t help but laugh at how ridiculous these statements sound vis à vis the SMC (and her) actions towards ME. Not limited to her book where she made some astounding allusions w.r.t. pwME.
 
Yann04 said:
I can’t help but laugh at how ridiculous these statements sound vis à vis the SMC (and her) actions towards ME. Not limited to her book where she made some astounding allusions w.r.t. pwME.
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First, they came for the Musk apologists....

Honestly, this isn't even surprising. I saw this in the wild on Bluesky and thought 'sure, that tracks'.

PACE was a political act motivated by ideological hatred of the disabled and chronically ill. It was a political decision to reduce the benefits bill. SW and his ilk are where they are precisely because they are so good at playing politics.

You know what, I was going to rant about Fox's hypocrisy but its so blatant I'm not going to waste the spoons.
 
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There are parallels between Fiona Fox’s appointment as director of the SMC and RFK’s appointment as US Health secretary. Without straying too far into politics, there are also parallels between the philosophy and tactics of the RCP/LM (of which Fox was a leading member) and those of the Trump/Musk presidency: post-truth, contrarian libertarian.

It’s notable that Trump has expressed his admiration for Viktor Orbán, who counts Frank Furedi (RCP founder) among his advisors.

Fox appears to choose to ignore the fact that the open letter is about Musk breaching the society’s code of conduct. If fellows of the royal society aren’t responsible for upholding its own rules then who is?

Fox said:
My caution stems from something I have been thinking about for years—should science get involved in politics?
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Written by a political activist with no science qualifications who is now not only involved in science but a spokesperson for the SMC and a member of the Royal Society, who appears to consider herself a scientist.

I note that The Brave Sir Simon has not added his name to the open letter (as of 18 Feb): https://occamstypewriter.org/scurry/2025/02/11/open-letter-president-royal-society-stand-up-values/

[edit: typo]
 
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