United Kingdom: Science Media Centre (including Fiona Fox)

Also, when a BMJ article is scheduled for publication, the editors sometimes contact academics and others in order to give them a heads up and time to prepare a "right of reply" ahead of publication and ahead of publication of Rapid Responses. When the opinion piece that I co-authored with Prof Allen Frances was published, in March 2013, it appeared online with a Rapid Response already published written by Joel E. Dimsdale, Michael Sharpe and Francis Creed (all members of the DSM-5 SSD Working Group).

 

You've lost me a bit, Bobbler.

The DD programme was broadcast in January and that episode would have been recorded several months prior to broadcast. Are you suggesting that there may be a link between the broadcasting of the episode in which Giselle Boxer's company was presented and the timing of the publication of the Long Covid paper in the BMJ and the Science Media Centre's briefing and expert reactions to that paper?

 

I've looked up the funding: Rehabilitation Exercise and psycholoGical support After covid-19 InfectioN (REGAIN) - NIHR Funding and Awards

And these things state start date and end date and so on.

I'm just curious with these things how 'certain' those dates tend to be perceived when put in. And whether that cascades planning for the work afterwards or that in itself is reactive or can be estimated with a bit of contingency etc for when a report is likely to come out. e.g. how far ahead something like this is beginning to pencil dates in for the purposes of planning.

And yes, I think from a comms perspective it is perfectly logical to be curious and ask regarding timings of different events etc. - and when they might have been slotted into schedules. Just as articles etc might ordinarily be planned to be timed around upcoming guidelines or releases of important reports or whatnot.

I'm aware DD was recorded in the summer, she was asked to be on it etc.

I have no idea whether this report, however is something that would have been known was on the schedule that far ahead though?

 

Hi, I’m working on pages related to ME/CFS in wikipedia, and I’m wondering if someone has a good source(s) to support the fact that the science media center often portrays ME as psychological.

I’m using the Monbiot opinion piece and also the link to Wessley being a founding member, I would need something else to make the claim stronger.
Not sure citing tuller’s virology blog will fit with wikipedia content policy.

 

I don't think the SMC has ever portrayed ME/CFS as psychological.
The first thing is that SMC just gets other people to give opinions.
The second is that BPS people never give the opinion that ME/CFS is psychological - always that it is multifactorial.

I think suggesting that people claim ME/CFS is psychological is an own goal because they love to point out that this claim is never made and that it highlights the failure of PWME to understand what their view is.

Of course they do think it is perpetuated by psychological factors but even that they probably never say on SMC.

The problem with SMC is that it gives a platform to people who support science of poor methodological quality. People are entitled to whatever view they like but not to claim it is justified by bad science.

 

Thanks Jonathan for the clarification

 

Jo is right but it's a subtle distinction. They always say they believe it's "biological" in the sense that it's often triggered by a virus or other infection. The perpetuation of the symptoms is attributed to deconditioning, which is also obviously a biological phenomenon, and the deconditioning itself is a result of sedentary behavior based on the purported "unhelpful" illness beliefs and fear of activity. This combination leads to the "downward spiral" of worsening fatigue, depression, disruption of circadian rhythms, cognitive issues, etc, etc. They believe, or seem to believe, that the symptoms are genuine and genuinely experienced, and they never say it's "all in the mind," although that shorthand is often used in describing their views. It's just that the source of the symptoms are not due to ongoing pathophysiological processes. They believe people need to learn how to "recondition" themselves to get better--and reconditioning is also a biological phenomenon. Getting people to move again can supposedly occur either through cognitive changes with CBT or by conducting little physical experiments through GET, and each approach has a significant dose of the other.

So psychology and beliefs play a key role in generating the illness and in the posited means of recovery. But it is overly simplistic to say they call it a psychological disorder or that they claim "it's all in the mind." In my conversation with George Monbiot, he used the "all in the mind" phrase. In the moment, I didn't want to interrupt the flow of the conversation to make this belabored explanation, although perhaps I should have. In the end, they do think changing beliefs/cognitions/psychology is a key to recovery, so I'm not sure there's all that much practical difference. But I've tried very hard myself not to "accuse" them of saying it's purely a psychological illness because technically they haven't ever said that, as far as I've seen.

 

Thanks Dave for the explanation. And I’m not sure I can say it here, but thanks so much for everything you do for the ME/CFS community, you are an amazing person.

 

I agree. My main thought is that you are unlikely actually catch these people saying any of this on SMC posts. And the SMC itself offers no opinions of its own.

 

Good point, but it's still not 'the SMC portraying...' quite.

Of course it would always be legitimate to slip in to the SMC Wikipedia page the point from George Monbiot that it was set up by an group run by a man who now works for Victor Orban.

 

Wow I read your amazon review of the book and it is really well done. Thanks for writing that.

 

That part was news to me. The rest I'd read or heard.

 

Article here: https://www.politico.eu/article/tro...attack-dog-frank-furedi-hungary-fightback-eu/

We have to be careful in adhering to S4ME rules on politics, but it’s quite neat how the Furedi, RCP, SMC link ties in with George’s other interests – ie environmentalism and politics. I’m hoping there might be a book in this.

 

I agree with this. But they are also not always consistent, and they appear to say different things to different audiences. Remember, Wessely is reported to have told an audience at the Institute of Psychiatry: “I will argue that M.E. is simply a belief, the belief that one has an illness called M.E.” (See: https://www.s4me.info/threads/who-is-simon-wessely.9364/page-36#post-522523)

And Sharpe accused Monbiot of spreading LC by writing about it.

They try to dress it up to make it sound like as though their BPS ideas are more sophisticated than saying it’s “all in the mind” but that appears to be what they think – and it seems to have become a bit of a game of semantics for Wessely.

However, I agree that it’s wrong for us to use the phrase “it’s all the mind” to represent their views, for the reasons others have explained.

 

That Monbiot interview was wonderful, thanks so much to both of you

I agree it'd have broken the flow, but I hope you'll be able to convey that point to him asap though, i think he'd want to know, & will certainly need to be aware of it for his future work on it, otherwise they'll be able to push back too easily. I think, given how he said (regarding pushback on previous article) he'd worked hard on making sure they couldnt easily push back on it, that he'll want to make sure they cant in future, using the 'we're not saying its psychological/all in your head' line. They're all about weedling out of criticism using technicalities if they can.

 

I probably shouldn't have said they "never" said it. I really meant in more recent statements in the last 10-20 years. And they've always touted the social factors--like media reports a la Monbiot--that convince people they have a non-existent (in the minds of Sharpe/Wessely) "disease." They never denied the psychological component, but they haven't at least in more recent years argued that it's all psychological. They always stress the infectious trigger--and I agree that's a specious use of "bio" in this context and that, in practical terms. And I do believe they sincerely think people experience genuine physical symptoms, and not made-up ones, arising from deconditioning--even though they also believe that people focus too much on them and make them worse by doing so.

And about that statement of Wessely's--I've never seen an actual transcript from the talk--just second-hand reports that he said it. It often gets relayed as if he definitely said it, rather than that it's a second-hand account. I mean, I assume it's likely he did say it. But unless someone has official documentation, we don't know for sure. It sounds like him back then--I think he would likely want to be 10 miles away from such a statement today.

 

good point.