United Kingdom: Science Media Centre (including Fiona Fox)

[Robert 1973]

I wonder if someone, or a group, might like to do a detailed, line by line analysis of the SMC factsheet for the uninitiated, as I did with response from the Minister for Care in the Westminster Hall debate on PACE (https://www.meaction.net/?p=39062&preview=true) Unfortunately I can't take this on myself at the moment.

 

[Indigophoton]

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 HealthPsychology and Fatigue: Biomedicine, Health & Behavior

Hmm. It appears that impact factor and veracity are independent variables.

 

[Stewart]

I think they are reliant on Cochrane as a verification these days. I do wonder if they are trying to get a pre-emtive strike in over this paper

This 'factsheet' ("...also available as a pdf for ease of download") is *definitely* a visible part of their behind-the-scenes attempts to 'spin' media coverage of the new paper.

I'd be surprised if they haven't also made contact with the many science journos in their contact list - in the hope of reaching anyone and everyone who's covering the new paper - directing them towards this factsheet and offering further criticism and commentary from Team PACE, to try and ensure that their rebuttal is part of any media coverage the paper gets. They know that the average journalist - who is after all working to a tight deadline and will have several articles to prepare that day - will gratefully accept 'informed' counterpoint from 'reputable' sources without too many questions, as it means they don't have to spend as long researching the story themselves.

 

[Liv aka Mrs Sowester]

Pfft. Same old desperate smoke and mirrors, minimisation, misdirection and dusty strawmen. I'm not going to waste any energy knocking them down.

Interesting how the magnitude of patient dissatisfaction is reduced to the SMC favourite phrase 'minority of activists', but then swells to become 'extensive feedback from patient groups' (no mention of charities, funny that) re. the NICE guideline review and then is reduced to '(sustained pressure from) activists' re. the poor ickle vulnerable CDC!

Have NICE ever decided to review their guidelines on anything due to pressure from activists? Activists don't seem to be able to get them to recommend prescribing prohibitively expensive life prolonging cancer drugs, do they?

Anyway, all in all blatant bias that anyone with a reasonably enquiring mind is going to question. SMC look pretty desperate.

 

[Seven]

How can we update this fact sheet and have it signed by the 100 people or maybe as an appendage from the PACE reviewers so maybe our own fact sheet blessed by all the community???? Vs their one not backed up by anything?

 

[Londinium]

I wonder how the Center for Disease Control feel about effectively being described as hiding evidence that CBT/GET works because of 'sustained pressure from activists'? That's a pretty strong charge.

 

[Esther12]

Pfft. Same old desperate smoke and mirrors, minimisation, misdirection and dusty strawmen. I'm not going to waste any energy knocking them down.

It might still work. They know their audience in the UK science media better than we do.

Interesting how the magnitude of patient dissatisfaction is reduced to the SMC favourite phrase 'minority of activists', but then swells to become 'extensive feedback from patient groups' (no mention of charities, funny that) re. the NICE guideline review and then is reduced to '(sustained pressure from) activists' re. the poor ickle vulnerable CDC!

LOL - I was thinking that. It's going to be so annoying if we do get journalists falling for this.

Once again, Cochrane and the failure to address the problems with their work are a major advantage for the PACE team. I don't hold out much hope for many journalists actually trying to understand and assess the exchanges between Courtney and Larun included within the review.

 

[Kalliope]

 

[NelliePledge]

Made me think of the scene Crocodile Dundee involving the knives.

Except it’s SMC standing with their feeble “fact”sheet and IiME standing there holding up the doc saying. “That is a fact sheet”

ETA sorry this was flippant I can’t help myself sometimes - this BPS BS is ridiculous

 

[Liv aka Mrs Sowester]

I wonder how the Center for Disease Control feel about effectively being described as hiding evidence that CBT/GET works because of 'sustained pressure from activists'? That's a pretty strong charge.

You won't get an answer out of them, they're all holed up in a broom cupboard hiding from the scary bedridden activists.

@Esther12 Whoever wrote this factsheet is approaching St Esther of Crawley level own goals. Surely no health journo reading that drivel is going to take it as gospel? The bias is so blatant you could see it from space.
The effort to minimise criticism from patient groups AND medical journals really isn't subtle.
The attempt to draw the CDC and NICE under the victim umbrella that the BPS cabal is hiding beneath is quite frankly hilarious.
At a push I could maybe see The Guardian fall for it, but not any of the others, not anymore.

The narrative around ME has been changed by people like David Tuller (shout out to @dave30th, whoop!) and David Marks. And you'd have to have been hiding in that broom cupboard with the CDC to have missed Jennifer Brea and Unrest.
And there are simply too many people with ME who are talking about it now, social media has been a game changer.

The SMC, however, is still stuck in the last millennium, clutching at strawmen and hiding behind calls to authority.

 

[BurnA]

I think we should ask the CDC to repsond to the claim that the reason they removed CBT and GET from their website was due to pressure from activists.

Is that how a health agency which is charged with protecting the health security of its nation, works ?

I think they would like to know what is being said about them - hardly portrays them in a favourable light.

 

[Esther12]

@Esther12 Whoever wrote this factsheet is approaching St Esther of Crawley level own goals. Surely no health journo reading that drivel is going to take it as gospel? The bias is so blatant you could see it from space.

Hopefully, but lets remember that Crawley just got promoted. I was recently reading a chess grandmaster talking about losing repeatedly to a super-computer, and saying it was like playing against an idiot who always won. If we don't understand the UK science media as well as the SMC, moves that appear self-defeating to us might actually be effective.

Considering the many problems with PACE, they're still doing pretty well with the PR war in the UK imo.

They're doing all they can to make this some story about patients' fear of having their illness classed as being 'all in the mind', and journalists seem to prefer virtue signalling about stigma and mental health to trying to understand the details of the problems with PACE.

It's pretty difficult for patient advocates to shift the debate onto complicated matters of trial methodology and away from fun debates about what should be classed as a mental health condition.

 

[Jonathan Edwards]

Whoever wrote this factsheet is approaching St Esther of Crawley level own goals. Surely no health journo reading that drivel is going to take it as gospel? The bias is so blatant you could see it from space.

Yes, there is a distinct flavour of 'cos my daddy sez it is' about it.

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

Everything is permitted. I regularly post here in the hope that somebody will tweet it. I am told somebody often does. Everything I say here may be taken down and used against whoever you like.

 

[Kalliope]

Jen Brea with twitter thread

 

[Tom Kindlon]

 

[Kalliope]

 

[ladycatlover]

Everything is permitted. I regularly post here in the hope that somebody will tweet it. I am told somebody often does. Everything I say here may be taken down and used against whoever you like.

Thank you @Jonathan Edwards. Done.

 

[Cinders66]

Hopefully, but lets remember that Crawley just got promoted. I was recently reading a chess grandmaster talking about losing repeatedly losing to a super-computer, and saying it was like playing against an idiot who always won. If we don't understand the UK science media as well as the SMC, moves that appear self-defeating to us might actually be effective.

Considering the many problems with PACE, they're still doing pretty well with the PR war in the UK imo.

They're doing all they can to make this some story about patient's fear of having their illness classed as being 'all in the mind', and journalists seem to prefer virtue signalling about stigma and mental health to trying to understand the details of the problems with PACE.

It's pretty difficult for patient advocates to shift the debate onto complicated matters of trial methodology and away from fun debates about what should be classed as a mental health condition.

They're doing pretty well because they control/influence all the media in a way we can only usually play catch up to. When you have a narrative of unruly patients causing trouble vs the respected medical establishment then any counter argument is dismissed as here we go, see as we said they're a feisty difficult lot, how do they have the energy ... Then there's the emphasis on controversy and debate - anything we say is just "the other side" of the debate which will just keep on running. Then they have the advantage of wide definition and criteria which means they can point to lots of studies where CBTGET is shown effective m and quote Cochran. That's enough on a superficial level to keep us oppressed.

 

[Esther12]

Then they have the advantage of wide definition and criteria which means they can point to lots of studies where CBTGET is shown effective m and quote Cochran. That's enough on a superficial level to keep us oppressed.

Even for a wide criteria though, that Cochrane review of exercise therapy needed a lot of spin to give a misleadingly positive impression (just look at the submitted comments included in the review, and the weak and evasive responses from Larun).

 

[Kalliope]