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What could be done about the Science Media Centre (SMC) in the UK
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.
Hoopoe
Senior Member (Voting Rights)
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.
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.
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MSEsperanza
Senior Member (Voting Rights)
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?
But how can we find those people and get them interested?
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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.
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.
I have tried a bit on this. When Amol Rajan became the presenter of the Media Show on BBC, I sent him an email. No reply. I sent an adapted version to Jim Waterson when he was appointed media editor of The Guardian. Same lack of response.
It's one of those things I want to spend more time on eventually. When I blogged about Fiona Fox, I got some interest from non-ME people who don't think it's a good idea, so there are potential allies out there (though also some who are a bit fringe and I'm not sure it would be good to associate with them).
I would say, though, that I think their influence regarding ME is waning. I also think it's worth trying to pick off individual journalists and develop good relations with them. It circumvents the SMC.
It's one of those things I want to spend more time on eventually. When I blogged about Fiona Fox, I got some interest from non-ME people who don't think it's a good idea, so there are potential allies out there (though also some who are a bit fringe and I'm not sure it would be good to associate with them).
I would say, though, that I think their influence regarding ME is waning. I also think it's worth trying to pick off individual journalists and develop good relations with them. It circumvents the SMC.
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Diluted-biscuit
Senior Member (Voting Rights)
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.
MSEsperanza
Senior Member (Voting Rights)
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
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Barry
Senior Member (Voting Rights)
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.
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.
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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.
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.
JemPD
Senior Member (Voting Rights)
That would be sooo good! (both or either)
Snowdrop
Senior Member (Voting Rights)
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.
Forbin
Senior Member (Voting Rights)
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?
[ "Quis custodiet ipsos custodes?" / lit. "Who will guard the guards themselves?" / "Who'll watch the watchmen?"]
Or am I being too Juvenal?
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Snow Leopard
Senior Member (Voting Rights)
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.
I keep thinking I should write articles myself and try to publish, but I have little time/energy for projects these days.
Barry
Senior Member (Voting Rights)
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.