United Kingdom: Science Media Centre (including Fiona Fox)

The conflict as being "scientists versus patients" is a false construction. There was plenty of criticism of PACE from scientists. My impression is that the people involved in medical research outside the UK and with an interest in ME/CFS were mostly on the side of the patients.

If anything this was a conflict between those who believed the illness was a psychological and behavioural problem and those who believed patients were disabled by a disease process. The psychobehaviourist side understood at some point it was losing and tried to win by constructing these narratives of harassment, death threats, patients attacking science as a whole, bullying NICE into submission and it just wasn't persuasive (to people with a serious interest in the topic at least).

 

The newspapers don't want Fiona Fox's melodramatic 'honest scientists under siege, harassed and silenced' stories anymore. All the press ran with the lurid fiction for a few years from 2011. But more recently the story is that PACE is rubbish research, CBT and GET are out, the NIH and NAM, and now NICE, say so. Sharpe tried high profile victim playing a couple of times, but even that story is stale old news now.

It's likely her own book is the only place Fiona Fox could continue repeating the same old fictions, the stories she concocted a decade ago.



Now in May 2022 there are even newer stories, stories about neglected patients, ME research underfunding, a Health Minister making pledges .... "Sajid Javid promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition ..... we must trust and listen to those with lived experience of ME/CFS,” he said."

 

The Sense about Science Media Centre for Eminence-Based HealthSense UK

 

Apart from Edzart Ernst

 

strange--on the UK site I can see that a kindle is available, but does not show up as an option for me. I guess the kindle rights in US are different.

 

I would have thought you had the right to burn books as much as any of us!
Maybe that's the idea - you get real paper to set a match to.

 

She probably asked Amazon to sell her book to everyone but you @dave30th, it's personal.

 

True, but it is also a struggle between those who believe in proper science and those who don't. Fox is calling for defense of this body of evidence. The body of evidence does not deserve any legitimate scientific defense. She's got her plot points mixed up.

 

The only good outcome of this is that LC blows this controversy open for what it really is and ends up destroying the SMC for their misbehavior, in general and Fox and Wessely in particular.

Hard to look more foolish than this as an organization pretending to uphold science, and doing exactly the opposite. Explicitly taking a political side and being unable to tell pseudoscience from credible science. I guess she has no idea at all what's happening about LC and how it relates to this? And this will be a total surprise?

 

Availability of Fiona Fox's book...

Most libraries won't have it yet, but those are the ones I found that seem to have e-books that can be borrowed if you happen to be either in Wales or affiliated with Imperial College:

https://discover.libraryhub.jisc.ac.uk/id/437524052

- Imperial College London Library

- National Library of Wales / Llyfrgell Genedlaethol Cymru

https://www.library.wales/index.php?id=6951

The British Library seems to have only a hardcover copy?

 

I'm cautious to say anything before I'll have seen the chapter on ME, but what an irony to use that Niemöller quote as reference to the PACE critics and at the same time, if I understood others' comments on the forum correctly, accuse the same critics of applying a Nazi analogy (among other real or alleged abuse) to Simon Wessely .

What a bad editor if they didn't see the irony.

And bad reviewers, too.

And a couple of other people strongly affiliated with the SMC (UK) it seems...

Not sure if Dorothy Bishop's blog article has been posted yet?

https://deevybee.blogspot.com/2022/04/book-review-fiona-fox-beyond-hype.html

Dorothy Bishop:

"A refreshing aspect of Fox's account is that she does not brush aside the occasions when the SMC - or she personally - may have handled a situation badly. Of course, it's easy to point the finger of blame when something does go horribly wrong, and Fox has come under fire on many occasions. Rather than being defensive, she accepts that things might have been done differently, while at the same time explaining the logic of the decisions that were taken.

"This is in line with my memories of meetings of the SMC advisory committee, where there were frequent post mortems - "this is how we handled it; this is how it turned out; should we have done it differently?" - with frank discussions from the committee members.

"When you are working in contentious areas where things are bound to blow up every now and again, this is a sensible strategy that helps the organisation learn and develop. I'm glad that after 20 years, the ethos of the SMC is still very much on the side of open, transparent communication between scientists and the media."

Edited to clarify, see Lucibee's post here.

 

And there's also a youtube interview by
Skeptics in the Pub Online

Beyond the Hype: The Inside Story of Science’s Biggest Media Controversies - Fiona Fox - YouTube

Code:

https://www.youtube.com/watch?v=WQXru-H2kPA

(Haven't watched and probably won't.)

 

The paragraph on SW brings up death threats, threatening calls, panic buttons, x-ray machines for checking post, and Mengele ("especially hurtful" understandably).

"He continued to be subject to all of this abuse despite having taken the decision in 2000 to stop his research on ME/CFS."

What he didn't do though, was to stop using his soft power to make sure that this type of "research" continued.

And that's the key to the SMC and FF - it's all about soft power.

 

SW didn't stop 'CFS' research in 2000. Somewhere there is a list of 'CFS' studies, dozens of them, with him listed as researcher on them from 2000 onwards. May be discussed on this forum somewhere. The studies are on Pub Med and other med research sites.


Likewise Esther Crawley did not stop 'CFS' research either. She is the highest funded 'CFS' researcher in the country. Peter White was the highest funded 'CFS' researcher before his retirement from QMUL and Barts (age related retirement, not 'harassment').


Michael Sharpe stopped his 'CFS' research after the NIH and US Agency for Health Research Quality (2014) stated that Sharpe's Oxford diagnostic criteria should "be retired" because it does not/cannot distinguish between ME and other conditions for which fatigue may be a component, such as depression. All studies that used Oxford Criteria have been downgraded or thrown out. Sharpe prefers to blame ME patients and sought publicity for his research woes.

 

Did he not also play some role in PACE, whilst trying to keep a low profile. There is so much disingenuous writing about.

It would be interesting if they could put dates to the stories about SW and give some details of the abuse and threats suffered, their credibility, the number of occurrences and the estimated number of perpetrators.

They prefer to keep it all very vague. It makes for a better story.

EDIT the problem with these stories is that it is hard to take them at face value considering the potential secondary gain involved.

 

This was a list of the documented involvement I noted previously. Hopefully it was accurate at the time of posting but I'm not sure how complete it is.
https://www.s4me.info/threads/carol...day-24th-january-2019.7719/page-3#post-136707

 

Comment by Clark Ellis under Steve Lubet's Open statement to SW, on the Faculty Lounge Blog 2016. Clark writes about SW involvement with the PACE Trial (10 Comments down):



'.. What's more, he did actually have involvement in the PACE trial itself.

He is mentioned by name three times in The Lancet paper's acknowledgements, 2011. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext (MY BOLDING below).

"The centre leaders were BA, TC, Eleanor Feldman, GM, MM, HO, Tim Peto, MS, PDW, DW, and SIMON WESSELY. The centres were at St Bartholomew's Hospital, London; Western General Hospital, Edinburgh; King's College Hospital, London; John Radcliffe Hospital, Oxford; Royal Free Hospital, London and the Frenchay Hospital, Bristol (all UK)."


"...specialist medical care doctors: Janet Andrews, Michael Broughton, Frauke Fehse, Eleanor Feldman, Janet Gray, Michael E Jones, Tara Lawn, Brian Marien, Tim Peto, Angharad Ruttley, Alastair Santhouse, Adrian Vos, and SIMON WESSELY. Kathy Fulcher, Tom Meade, C L Murphy, Anthony J Pinching, and Rajesh Shah contributed and provided advice about the study, and Kurt Kroenke, Jan Scott, Peter Tyrer, and SIMON WESSELY commented on an early draft of the report."


And in the PACE trial's protocol, 2007, he is mentioned three more times. “The authors thank Professors Tom Meade, Anthony Pinching and SIMON WESSELY for advice about design and execution.”


So to summarize, it appears from these acknowledgements that he was involved in the PACE protocol's design and its execution, he led one of the CFS centers used in the study and he was one of the standard medical care doctors involved in one of the arm of the study itself, and he commented on a pre-publication version of The Lancet paper. ...'


https://www.thefacultylounge.org/20...simon-wessely-defender-of-the-pace-study.html

 

He has stated that it's an error, and that he stopped being centre manager, because he was too busy. But obviously not enough of an error for him to ask The Lancet to correct it though.

It is entirely disingenuous, because he knows that no-one else cares whether he was or wasn't.

Also, I think what he probably means about "stopping his research into ME/CFS", is that he did not *initiate* any research (as principal investigator), even though he might have participated as part of others' studies, reviewed studies, appeared on papers, written about it, talked about it, ran clinics, treated people, generally schmoozed etc etc.

 

There is only one customer review of FF's book on UK Amazon and no customer reviews of it on US Amazon. Is it that we are the only people buying it ? .....