https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-20#post-266170what study is this? I haven't heard about it. Do you have a link?
https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-20#post-266170what study is this? I haven't heard about it. Do you have a link?
I am aware of a well-regarded, multi-award-winning science documentary company which thought this was a fantastic story and attempted to pitch this a few months back. They were knocked back in very definitive terms by all the obvious commissioning editors in UK broadcast television.
My impression is that for something like this to get commissioned, it will require some combination of: luck with commissioning editors (an unusual individual willing and able to push this with their channel), a compelling programme concept and story (perhaps involving a celebrity), new scientific developments, and/or a commissioning route which circumvents anyone connected to the Science Media Centre (which at most broadcasters means avoiding both the Science and Current Affairs teams).
If that's true it's truly shocking but in a way also unsurprising. Some people have far too much power. I wonder whether the program makers explored other options with other broadcasters.
I've already written to them several times, and then found out apparently a very good Panorama programme was made in the last two years, but the SMC blocked its transmission (rumours of it all getting ugly), so it has been archived. There's no point in asking them to make another - the abuses in the system need addressing first.
I seem to remember that the makers of 'Voices from the Shadows' also approached C4 many years ago, but the film was turned down because it was 'in the wrong format'. IE something to do with it not having a constant narrator/interviewer.
I don't know how much the an edition of Panorama costs but there's no way department heads could justify not broadcasting a finished programme without some major public legal process or the intervention of Senior management which would itself bring publicity. What may be more plausible is that there was some provisional research done by the Panorama team and at first contact the Psychs said they wouldn't co-operate, effectively killing any hope of balance which for a medical/NHS story Panorama would likely have seen as essential.This sounds like hearsay to me and strikes me as highly, highly unlikely. I have been in touch with a BBC documentarian recently and if this happened, they knew nothing about it. It's also just almost impossible that journalists who made the program would sit still for this and not leak it to other journalists.
If there's a block in UK establishment media, there are ways around that. A lot of people watch tv content from streaming services (Netflix and so on) and they commission their own material. There have certainly been similar medical documentaries produced by these providers. A documentary could even be produced independently and then sold to one of these services.
And, maybe we don't try to take the BPS people head on, at least at first. Even something on the existence of post-infection diseases would be useful and perhaps easier to slip past BPS gate-keepers. For example, looking at the incidence of post-infection diseases across history - after big flu outbreaks, after Q fever, after SARS-CoV-1, after MERS, after Ebola, of course Long Covid. And the very well accepted consequences of infections like Guillain-Barre, rheumatic fever, polio. Maybe MS.
I think that helping people to understand that Long Covid isn't a new phenomenon would be useful in swinging public opinion towards the idea that post-infection illnesses are something to be expected and that they have physical mechanisms, even if we aren't sure what they are yet for all of them. If people know more about how common these impacts are, it gets harder to convince them that thinking better thoughts is the cure.
I would steer well clear of Netflix. We should remind ourselves of how they completely misrepresented people, including one with very severe ME, in this documentary:I like this idea. Netflix has a wide audience, and people at Netflix and similar likely know someone suffering from LC if they are not suffering from it themselves.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3154208/
It's very relevant to the CBT studies in ME. It compared the effect of medication, placebo, sham acupuncture and no intervention on subjective and objective outcomes in asthma. The results are similar to what we see in CBT for ME studies.
View attachment 19858 View attachment 19859
What may be more plausible is that there was some provisional research done by the Panorama team and at first contact the Psychs said they wouldn't co-operate, effectively killing any hope of balance which for a medical/NHS story Panorama would likely have seen as essential.
I would steer well clear of Netflix. We should remind ourselves of how they completely misrepresented people, including one with very severe ME, in this documentary:
Netflix "Afflicted" - ME included
I imagine these organisations are big and variable, producing and screening both quality content and rubbish. As already pointed out, it's probably largely a matter of finding the right decision-maker - probably someone with personal experience of ME/CFS or LC. Or finding a celebrity willing to help get access.I was thinking in terms of what @Hutan proposed. Although, admittedly, I haven't watched "Afflicted." I was thinking something more like an informative docu-show that isn't directly focused on the lives of people with post-viral illnesses.
I think the only way I would trust Netflix not to screw us over, however good our proposal, would be to actually make our own film then persuade Netflix to show it, as Jen Brea's Unrest eventually did. But that had to win awards and get noticed first.I was thinking in terms of what @Hutan proposed. Although, admittedly, I haven't watched "Afflicted." I was thinking something more like an informative docu-show that isn't directly focused on the lives of people with post-viral illnesses.
I imagine these organisations are big and variable, producing and screening both quality content and rubbish. As already pointed out, it's probably largely a matter of finding the right decision-maker - probably someone with personal experience of ME/CFS or LC. Or finding a celebrity willing to help get access.
While it's good to be aware of an organisation's track record, I wouldn't write-off a media outlet just because they have produced poor content about ME/CFS in the past. It wouldn't leave us many to work with.
I think the only way I would trust Netflix not to screw us over, however good our proposal, would be to actually make our own film then persuade Netflix to show it
Edit - crossposted with Trish. Yes, would have to be independently made
That depends on which patients. Especially if the scope was such that it was relevant to Long Covid, I think enough very wealthy people have been affected that it would be possible to find one able to fund a documentary.This would have to be a pet project of an ME organisation, rather than a few patients.
I agree that a book would probably do better at this. It removes the problem of people doing whatever they want with the information, e.g. Afflicted.I would like to see popular science/health books written about the ME scandal and articles in newspapers winning prizes for investigative journalism. The people we need to convince are clinicians, researchers, and policy makers. I don't think an ephemeral TV program that the Wesselyites can dismiss as biased will have any impact on our care.
The human angle has fallen completely flat and decision-makers ultimately care far more about money than lives, so I'd say absolutely. Estimates of the economic costs of ME are in the trillions already. It's somewhere in the $100B/y range, and that was before LC, so extend that to decades and it's a huge amount that just keeps getting bigger and bigger, it adds an element of haste to solve it.Would taking an economic angle, which then brings in the other issues, be a way forward focus for a documentary? I have pondered why, if the BPS crowds model was so effective, they were not pushing how effective they were economically. As they are not, I suspect 'they' know well that they cannot prove that BPS methods are not making a difference. And this is backed up by PACE economic findings. And FINE too (as this was a null result).