Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

dratalanta said:
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).
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Trish said:
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.
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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). Those services 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.
 
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AknaMontes said:
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.
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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.
 
Sly Saint said:
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.
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TV docs looks very different from stuff like Voices From The Shadows. There are production companies who do this day-in-day-out for TV and know the format and recipe. It could be an idea to pitch to some of them who have made docs on similar topics before. I don't know enough about how the process works, and whether its more usual for production companies to appproach the big broadcasters, or vice-versa.
 
dave30th said:
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.
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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.
 
Hutan said:
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.
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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. Sometimes Netflix shows generate a lot of media interest, but I guess that comes down to how attention-grabbing it is.

Hutan said:
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.
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This is a smart way to approach the matter.

Hutan said:
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.
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Hopefully, something like this will get people questioning what physical mechanisms are being considered in line with past well-known ones.
 
livinglighter said:
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.
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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
 
CRG said:
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.
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It could have been a garbled account of our aborted attempts six years ago, perhaps...
 
Trish said:
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
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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.
 
livinglighter said:
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.
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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.
 
livinglighter said:
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.
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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.
 
Hutan said:
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.
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Netflix screened Unrest in the UK. Which means that their algorithm would find it easy to attract viewers for an ME polemic. Basically, they will show anything - no concerns there about balance or rights of reply!


Edit - crossposted with Trish. Yes, would have to be independently made.
 
Trish said:
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
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Shadrach Loom said:
Edit - crossposted with Trish. Yes, would have to be independently made
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I think that's the benefit of a streaming service like Netflix as opposed to Panorama - which I do think has immense value if it can be navigated correctly.
 
I suspect it would be a significant challenge to find the £50k+ that even a very lo-fi, no-frills, volunteer supported documentary would cost. This would have to be a pet project of an ME organisation, rather than a few patients.
 
There may even be documentaries being made including stuff about the wrong turning ME research took and the dominance of psychosomatic views and the way this is now impacting Long Covid research and treatment. LC organisations are certainly protesting about the NIH and others wanting to do exercise therapy trials.
 
Re. NIH and a documentary. One could interview Nath or Whittemore once they have published the findings from the NIH intramural study. It would be a nice contrast to the UK research scene which, with a few exceptions like DecodeME, insists on remaining in the dark ages when it comes to ME.

(in many countries it's even worse than in the UK though)
 
Trish said:
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.
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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.

Actually, more than one would be good. There is so much to cover here that no one person can give it justice. But that's already been done and didn't affect anything, the bubble of magical beliefs is too thick.
 
Joan Crawford said:
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).
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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.

This treatment model can genuinely be described as wasting money to lose far more money while harming people and nothing else to show for it. The latter doesn't matter too much, but the money part would play well.

Edit: The same has happened to LC, with most of the media reporting focused on individual stories. They didn't move the needle a bit. Those are irrelevant. It's the big picture that counts here, millions of people are disabled in the prime of their lives who should be working and aren't as a result of awful decisions, pseudoscience and a whole lot of fraudulent claims.
 
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