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

Netflix is hit and miss and has much lower credibility than BBC but it’s better than nothing. Netflix recently made a documentary about CRPS, another contested illness considered functional by some, and it was heavily biased in favour of the family and against the mainstream physicians involved in the care. (Care being rediagnosis with FII, taking the child from the family and sectioning her in hospital to undergo the usual rehab type treatment.)

 

Long Covid changed very little, but it changed that. I think there are plenty of places where the funds could come from. But they would have to take the LC angle heavily, which is probably the right way anyway, tracing this global disaster back well over a century.

Plainly speaking, the medical profession has known about this scandal for even longer than the oil industry has known about the harms they cause. Even more so for tobacco. This is shocking, it's genuinely one of the biggest scandals in the world, certainly in the professional world. Theranos was a tiny scandal by comparison, barely a blip.

 

Yes, I have just posted about this documentary in the Telly thread myself.

Streaming services are making more and more documentaries these days, the format seems to be more popular than ever. And I agree that Netflix just adds whatever seems to pique the viewers' interest, I don't think they have some special bias against us. It's a business in the entertainment industry, not investigative journalism, so the quality sometimes falls victim to that. On the other hand, such a doc may be available to people in quite a lot of countries.

 

Can I ask which book? This has already been covered? Thanks!

Gez Medinger and Danny Altman covered the ME situation really well in the Long Covid Handbook, which is a very good book.

Gez is making a lot of short films on YouTube and talks to a lot of researchers. He might be a good person to make an independent documentary.

 

In that case we need to find a friendly research director at a reasonably centrist socio-medical think tank, the Kings Fund or Social Market Foundation say, and tee them up to produce a report on “how to navigate and fund the long-term LC crisis while avoiding the mistakes made in ME”, with a foreword by a couple of friendly politicians who introduce the report at a canape-strewn launch that gets written up in the Politico morning email.

Documentaries are only useful for shifting public perception. And books hardly move any dials at all.

 

The ARD in Germany, which is something like an equivalent of the BBC in the UK, did a documentary on Long-Covid https://www.daserste.de/information.../sendung/hirschhausen-und-long-covid-100.html which also included a recent follow-up https://www.ardmediathek.de/video/h...lbnMtY2hlY2stdXAvMjAyMy0wNi0xMl8yMC0xNS1NRVNa. This documentary reached a wide public audience.

I didn't watch it, but they also interviewed Scheibenbogen about ME/CFS and included patient stories as well as people like Karl Lauterbach. One of the reasons this documentary seems to have worked is due to the producer who is famous in German TV, but at the same time is also a medical doctor https://de.wikipedia.org/wiki/Eckart_von_Hirschhausen who does a lot of science popularization on TV. So he's sort of the perfect person to do such a documentary.

Even in this scenerio there was a bit of backfiring as news outlets instead of reporting on the horrible fates of these Long-Covid patients preferred to focus on the fact that someone is going for an unproven therapy in front of camera, as this doctor went for a HELP Apheresis after a Covid infection as preventative measure along the lines of "why not". They also confronted a BPS researcher with evidence and made him look rather poor in front of camera.

Whilst this sub is more UK focussed I think a documentary on ME/CFS (and or Long-Covid) might currently be easier to be filmed in Germany with people like Scheibenbogen or even the US with people like Iwasaki.

 

Unfortunately Judy Mikovits 'Plandemic' went viral in 2020 and her book 'Plandemic- Plague of Corruption' sold out at that time also. So a 'reveal all' documentary about ME/CFS might be seen as another 'conspiracy/sour grapes'; and I imagine that parallels might be drawn with her accounts.

Similarly, Dr Myhill has also previously been depicted as a maligned 'biological ME/CFS' champion and features in other documentaries.

Neither help to portray the community as sane and rational.
Whoever attempts a new documentary needs to be very careful not make the public perception of pwME even worse.

 

THIS

Id like to see a feature length or hour long 'episode featuring all the content from the Dialogues short videos. If that could be made into something it would be amazing.
Otherwise i worry very much that whatever is done will be an overall negative.

Particularly since we have the whole CCI stuff going on now

 

Patients/advocates are unlikely to have editorial control, it's naive to assume that any programme commissioner or production team are going to be 'on our side' or maintain a brief to give ME/CFS advocacy a boost. In the case of UK TV broadcasters they are under legal restrictions regarding balance so at the minimum any organisation or persons being criticised, would have to be given 'in programme' opportunities to respond - there's no reason why the producers wouldn't find the 'other side' a better focus of their programme.

The biggest problem though IMO is that as a story the ME/CFS history really isn't very interesting, yes there's a bit of scandal, yes there's a wronged patient group, yes there's some dodgy science and wasted Government money - but what TV audience is going to be excited by any of those issues - it's all stuff they've heard a dozen times before, the worst media death is that of becoming a yawn*. Long Covid is topical but the science (such as it is) is a mess and contested, yes lots of opportunity for 'white coats' to camera with test tubes in the background but honestly what is there to actually inform an audience about.

If BBC Science still has a budget I guess that at some point Horizon will do an hour on Long Covid but for now most TV treatments of LC are probably going to be of the wringing hands type with reassuring white coats offering a metaphorical arm around the shoulder so as not overly alarm the viewing public, I'm not sure associating ME/CFS with that stuff would bring much advocacy gain.

* in the words of a Nobel Laureate:

"Didn’t seem like much was happening
So I turned it off and went to grab another beer
Seems like every time you turn around
There’s another hard-luck story that you’re going to hear
And there’s really nothing anyone can say
And I never did plan to go anyway
To Black Diamond Bay"

 

I think you mean Matthew Hills .....? H2 has done 2 docs on ME. also BBC Panorama guru editor Maria David who called me 2017 pre NICE Review...?

 

Which brings me back to @Hutan's suggestion

I'm not sure if targeting clinicians, policymakers, lawmakers, etc., is helpful right now because there is a lot of vested self-interest in following the status quo and even for those who do not completely agree, the powers that be are bigger than them.

Disseminating information to the public and celebrities about the existence of post-infection diseases and the pathogenies that can occur with infection may help a lot more people understand that LC and the symptoms aren't as new as they are made out to be. The idea is to empower people with information to delve deeper, in the hope, given the circumstances, they will begin to equip themselves with more information to informatively challenge the idea that thinking happy thoughts can improve health in these situations.

Shifting public perception could start a whole new larger barrage of scientific conversation. Podcasters with LC, or those interested in it could be asked to review the show, etc.

 

Things like Osler's web and more recently Ryan Prior's book. There have been about a handful.

 

To be fair is he ever publicly challenged by a worthy opponent? I mean the interviews I've seen him in have always been a situation where he is called in as an expert witness with no opposition to set the record straight.

That's why I made the Challenging Skeptics thread, there needs to be a public debate.

 

Not that I remember. From any of the prominent ideologues, actually. The few times some minor players had the slightest challenge to their claims they came off very poorly, and this is why they avoid it entirely. The biopsychosocial model is treated like a state religion, immune to criticism, in fact criticize any of it at your own peril.

No doubt this is largely why they believe in it. They never actually have to own up to anything, never actually face criticism, they simply ignore it. Living in a bubble where only fictional models matter and reality never does. This is what psychosomatic has always been.

 

https://uk.linkedin.com/in/matthew-hill-53196115
matthew hill
HEALTH CORRESPONDENT WEST at BBC News

United Kingdom
HEALTH CORRESPONDENT WES
Mar 1995 - Present 28 years 5 months

Multi-award winning Health Correspondent- most recently winner BBC News Awards Best Exclusive 2021 & Highly Commended Association of International Broadcaster Single News Report for his work on rape and torture of Uyghurs.
Within a month of his appointment, he broke one of the biggest medical stories of the 20th Century - the Bristol heart scandal.

Since then he has regularly reported as health correspondent for Newsnight and reported on Panorama and the One O'clock News and File on 4.

His investigations on Radio 4 include a series of programmes on Stem Cells that revealed how patients were being misled into paying thousands of dollars for unproven therapies.

One programme, 'Stem Cell Swindle' uncovered new allegations that healthy newly born babies had been taken at birth from a hospital in the Ukraine and their bodies dismembered and harvested for neuronal stem cells.


In 2008 Matthew went undercover for Inside Out West and the national news, posing as a patient asking for, and being offered, stomach banding by a Belgian surgeon, even though he was not heavy enough to qualify for surgery on the NHS.


Best Cancer Reporter 2015 European Institute of Oncologists.He has won the award for Television Broadcaster South West seven times. He has also won five national awards from the Medical Journalist's Association.


Some of the stories Matthew has uncovered in his time have had led to wide-ranging changes.

He reported on the very first case of the Bristol organ retention scandal and the racists organ scandal, which led to the resignation of the chief executive of the United Kingdom Transplant Authority.

Later, his story about the sale of a second hand computer by Bristol University Law Department, which contained the names of paedophiles and their victims, led to a police and university inquiry.


Matthew is known for building up a wide range of health contacts, but he is always happy to hear from new contributors

 

ME Association - POST-COVID FATIGUE/ME - BBC WEST ...

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POST-COVID FATIGUE/ME - BBC WEST INTERVIEW REQUEST Matthew Hill, health correspondent for BBC West in Bristol, would like to speak to someone who has

 

You may well be right, if I find out any more I will post an update. I wrote to Panorama to ask if this is true, but have had no reply. I haven't had a reply to my suggestion they do a documentary focussing on one of three areas - delayed assisted nutrition, false FII accusations/switched diagnoses, or the fact we are all having a BPS model of healthcare forced on us without our consent.