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

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.

 

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.

 

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.

 

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.

This is a smart way to approach the matter.

Hopefully, something like this will get people questioning what physical mechanisms are being considered in line with past well-known ones.

 

I have used this study to explain the ME/CFS and CBT issues to colleagues and why objective measures are needed.

 

It could have been a garbled account of our aborted attempts six years ago, perhaps...

 

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.

 

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.

 

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.

 

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)

 

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.

 

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.