What could be done about the Science Media Centre (SMC) in the UK

This was mentioned in another thread, but I thought it was worth having its own thread.

 

One idea that comes to mind is: it would be great if there was a published paper documenting the biased way the Science Media Centre has covered ME/CFS matters.

Though I'm not offering to write it myself.

 

I was wondering if we could put forward our own expert opinions from a group of professionals we keep on a database. So when smc trot out Rona moss to show endorsement of an exercise study we issue an expert statement to the press with statements from stateticians, physiotherapists, personal trainers etc on the science and the issue with exercise etc.

 

We could send an article to SMC journalists that explains how to recognize problems with systematic bias in unblinded studies. While never mentioning PACE or ME/CFS.

Such an article would also be useful to protect decision makers from being manipulated by dishonest therapy pushers.

PS: or actually, just an article in general for the broader public talking about an epidemic of unreliable claims based on fatally flawed studies. On a site like The Conversation.

 

IMO we (S4ME) should have some more independant and not too ill experts supporting us, i.e. scientists and clinicians neither doing own research on ME nor treating ME patients. Neurologists, exercise physiologists, neuropsychiatrists etc. who don't follow the BPS narrative on ME and who have spare time and energy to write comments when needed. Ideally they should be as rigorous as @Jonathan Edwards in criticizing ME research.

But how can we find those people and get them interested?

 

I think people with expertise and being patients are powerful witnesses/sources as well as people like Jonathan Edwards, with happily just expertise. Hearing a former personal trainer like jamieson be unable to do exercise and have poor objective VO2 is compelling to skeptics. We need his type stories out there.

I was struck on the thread on Facebook on the dr bansal replacement by a psychiatrist with eating disorder background, ie totally inappropriate and a real blow with so few good CFS referral services. . A psychiatric nurse who’d had to leave her work ten years ago because of ME posted how she could not see from her expertise and as a patient how this could be at all appropriate. Her voice was much more powerful than mine which Would just be trashed as just another pwME hating on psychiatry. We can just ask people like that if they’d be involved , I asked her to join here but there wasn’t response unfortunately, but some might. We could also seek people out or ask on the social media if outsiders positively engage, if they consent to be on on a database.

 

Personally I think doing to much would cause more harm than good and that finding a biomarker will be what fully turns the tide. Every bit of misleading information they publish should be challenged but going in too hard just reinforces the troublesome patient narrative.

 

Of course they are.
ETA: But much of our activities we do at cost of our health. Some of us are too ill now to communicate at all.

ETA 2: I think in order to counter the SMC‘s biased reporting it needs unbiased, scientifically rigorous comments, also on biomedical research done by our allies. For that, the more capable people we have the better, no matter whether they are patients or not. I was wanting to say: What primarily matters is expertise, but sometimes also combined with being able to respond promptly.

And all this could take place on S4ME as I was dreaming of here: https://www.s4me.info/threads/blog-...y-valerie-eliot-smith.7538/page-6#post-136253

 

Didn't @dave30th say he was planning to look at the SMC, following the excessive media coverage of Pariante's "not much to see here" trial.

 

Whatever is done, it needs to be rooted very firmly in facts.

Could we for instance, identify all the newsworthy ME stories of the past year, and then identify which stories the SMC actually reported on. That alone might indicate their bias. The issue of biased reporting itself for any one story, might be better left for another report, lest it muddy the waters.

 

I think that the worst thing they did recently when the challenge PACE research got published. They covered it with a completely biased background information section to the story totally on side of the BPS research.

The problem on theirPROMGET stance we have is that they can just say we are following evidence based medicine and the NHS take the same position as us.

 

That would be sooo good! (both or either)

 

But we may be able to help by assembling useful material.

They would need to be from the UK otherwise no-one will take note possibly?

Yes, good idea, IMO.
Perhaps some individuals nearing retirement can be approached and educated if willing. This could be done through contacts. Someone who knows someone etc. Or asking for help from one of the advocacy groups in the UK since it could prove mutually beneficial.

 

The SMC is a registered charity (surprisingly) so if it's in contravention of any charity legislation, that's a point of weakness.

 

When seeking to challenge those (like the SMC) who would appoint themselves as the arbiters and guardians of "truth," I think a good meme might come in handy.



[ "Quis custodiet ipsos custodes?" / lit. "Who will guard the guards themselves?" / "Who'll watch the watchmen?"]



Or am I being too Juvenal?

 

Really? I mean they're clearly a lobbying group, so...

 

It would be good if we had a way to generate press coverage ourselves. I think this has been looked at, and some have actually sent out press releases. But is it possible to do more to get press coverage of the things we want covered?

I keep thinking I should write articles myself and try to publish, but I have little time/energy for projects these days.

 

The Countess of Mar as the Chair of Forward-ME threatened to report the SMC to the Charity Commission last year I think. It was to do with a so called "fact sheet on CFS/ME " that they had published. I don't know what happened as a result.

 

How does a media centre get charity status, and all the tax perks that that brings with it? Is that normal? Or unusual? At the very least one would expect a condition should be for it to be very even handed.