United Kingdom: Science Media Centre (including Fiona Fox)

The science media centre has played an important role in stigmatising CFS patients, and anyone critical of PACE and related work, so it's always interesting to look at how they present themselves.

Someone sent me this old report recently, and while it's not that interesting or relevant to us, I thought I'd post up my notes on it:

https://www.sciencemediacentre.org/...-Centre-mental-health-consultation-report.pdf

The intro talks about the important role Til Wykes played in setting up the role of a mental health specialist at the SMC. When the tribunal ordered the release of PACE data, Wykes was alongside Sharpe and Moss-Morris at the SMC's 'CBT – does it really work?' talk where they addressed questions like "What about issues like placebos and double-blind RCTs – does it matter if we don’t have the same level of rigour as for drugs?" [no sceptics invited]:

http://www.sciencemediacentre.org/cbt-does-it-really-work/

Maybe, if journalists don't have time to properly investigate a story, they should just not write about it, rather than farm it out to an untrustworthy organisation like the SMC?

There's been a push to change this, but the MH research charities I've seen seem completely thoughtless, and happy to channel money to poor quality research.

Wessely comments:

Luckily, the SMC found a way to evade discussions involving troublesome patient groups:

Concern about the poor reputation of psychiatry, and the desire to improve it:

The SMC claims this with regard to different views from psychology and psychiatry:

Guess who came to fill this role?:

They love to seize an opportunity:

Looks like the author of this report, and the first Head of Mental Health at the SMC had "chonic fatigue" from 16-19, and wishes she had access to the FITNET trial Crawley was hyping.

"I wish this treatment was around for Chronic Fatigue when I had it at 16 to 19 - the brilliant Esther Crawley Bristol Uni on @BBCr4today CFS"

https://twitter.com/user/status/793367972127596545


Simon Wessely liked her tweet.

 

On one hand they do want to hype bran scanning as proof of evidence based psychiatry but on the other they will be worried that they cant just be pronounces of subjective nonsense allowing them to own as many as possible conditions with their gods presiding over them with voodoo and quackery.

They love to be incontrol of the "in between" areas of medicine which would no longer be so once they have diagnostic tests and the understanding of the mechanisms.

They lose control of things like MS etc when scanning improves to show neurological damage instead of themselves owning such conditions with "weak mind" interconnected mind body nonsense.

 

That looks to me as if written by Michael Sharpe. He is desperately trying to hold on to his position by pulling rank.

The international ME research community is almost unanimously fed up to the back teeth with NICE guidelines and want them changed. The Americans and the Dutch have already said so officially. Somebody is living in a goldfish bowl.

 

Looks like a desperate rearguard action. The Collins definition seems particularly apt: "if someone is fighting a rearguard action or mounting a rearguard action, they are trying very hard to prevent something from happening, even though it is probably too late for them to succeed".

 

https://twitter.com/user/status/976479181742723072

 

I was going to add more quotes from the text which I found unbelievable, but it was impossible to choose just a few.

 

I am not sure I like that definition of a rearguard action. It can also be an action by small forces to delay an attack to enable the bulk of the forces to get away and fight another day on their own terms.

 

An attempted pushback due to all the success we've been having recently, I would say, possibly even some attempted revenge for being ousted from the CMRC. One useful aspect of this is that it makes it even clearer how biased the SMC is, and to which side.

 

However, experts from the medical community, including independent statisticians, trial design specialists, and other researchers have stated that it is a good quality trial

I would love to know who these independent statisticians and trial design specialists actually are. They never seem to stand up and be counted. Maybe because someone will point out they are being dumb. When was an unblinded trial with subjective endpoints worth row of beans? But of course the problems with the trial are about psychology and not statistics and presumably nobody asked a trial psychologist.

I am sorry that I do not tweet, but I never will.

 

https://twitter.com/user/status/976483328739168256

 

Perhaps someone can tweet a link to your post.

Such as @Tom Kindlon?

 

I think Tom has his own fish to fry @Sasha

 

Well I'll happily quote this (Grrrrr! )

 

Will happily tweet anything you like with your permission. Or links to posts here?

 

@Cheshire - would it be good to maybe change your title to 'SMC factsheet for journalists: 'CFS/ME - the illness and the controversy' so people realise what it is?

This factsheet looks pretty desperate to me.

 

We shall await tomorrows Today programme with expectation.

What would an SMC campaign be without the BBC?

 

"This is a Factsheet issued by the Science Media Centre to provide background information on science topics relevant to breaking news stories. This is not intended as the ‘last word’ on a subject, but rather a summary of the basics and a pointer towards sources of more detailed information. These can be read as supplements to our Roundups and/or briefings."

No mention of the JHP special edition on PACE:
http://journals.sagepub.com/doi/full/10.1177/1359105317722370

eta: have just emailed David Marks with the link to the SMC

 

Here's an explanation for that, and a new one
Those who disagree with this body of evidence cite review articles and reanalyses of trial data published in low impact factor journals such as The Journal of Health Psychology and Fatigue: Biomedicine, Health & Behavior