What can we learn from the Post Office scandal publicity (including TV)?

[Kitty]

One thing I don't understand about the Post Office story is where money went, if indeed it went at all.

Some of the deficits may not have existed, but it's difficult to unpick because engineers were invisibly changing branches' figures in the background.

The money the sub-postmasters paid in to balance their books was real, and appears eventually to have been paid into the business's profits. That might be where some of the legal jeopardy lies for the management.

 

[CRG]

I think that is the sort of thing that could be a good hook for a drama. Also the fact that Peter White and others knew from their own research that people with ME/CFS that had a post viral genesis and PEM were made sicker by exercise, yet they deliberately lumped us in with people with idiopathic fatigue and people with fatigue associated with depression in the Oxford definition of CFS, and designed PACE to show GET worked. I think a fictionalised lions den of psychiatrists and therapists deliberately setting it up to prove their theories right, alongside individual patient stories of serious harm and other doctors being shocked by helpless in the face of the juggernaut.

In other words, don't focus on poor little miss jones and her invisible fatigue, focus on the strategising by White, Wessely et al to bury ME/CFS in 'fatigue' and their roles in insurance and DWP advising.

I'm unclear how it would be possible to dramatise that without identifying the individuals and raising balance and defamation issues. It's not like cancer or diabetes or heart disease where a fictionalised medic can be set without any defamation issue because there are so many possible figures who might be DrX. In BPS circles where DrX's interest is ME/CFS, there really aren't that many candidates and I'm sure media lawyers would have some discomfort given that presumably the value in a dramatisation is being able to say this is based on real events and real people.

Without a definitive bio-pathological explantion of ME/CFS contempory with what White et al were doing there's an argument for genuine medical uncertainty (yes we know that's guff but that's not the point). More significantly there are no legal determinations of medical harm, I think that would be a deal breaker for media lawyers. Moving to a 'this is fiction' label might free up the narrative but that endangers the whole point - writing fictions about ME/CFS no matter how much based on real life risks the audience becoming further confirmed that ME/CFS is fictional.

 

[Trish]

I'm unclear how it would be possible to dramatise that without identifying the individuals and raising balance and defamation issues.

I do realise that. I'm aware my suggestion is wishful thinking and fantasy.
But then this whole discussion is wishful thinking and fantasy. It's not going to happen just because we wish it to.

 

[CRG]

I do realise that. I'm aware my suggestion is wishful thinking and fantasy.
But then this whole discussion is wishful thinking and fantasy. It's not going to happen just because we wish it to.

Nevertheless it's useful to understand the mechanisms involved, why things work or why they don't; one never knows what opportunities might arise and being able to respond to those in the most effective way is obviously desirable. I'm not sure that dramatisation would be involved but I'm (uninformedly) optimistic that DecodeME will produce documentary treatment at least at the level of current news when we see full publication.

 

[Jonathan Edwards]

The money the sub-postmasters paid in to balance their books was real, and appears eventually to have been paid into the business's profits. That might be where some of the legal jeopardy lies for the management.

So this is extortion with menaces?

Surely quite apart from exonerating these people and compensating them for hardship they should be paid their money back with interest?

 

[Fainbrog]

I think a drama would be good to show the scale of suffering and explain PEM etc. But I would be worried about the accuracy of the science and getting it right. I think there needs to be a good documentary, or podcast series first, to help the people making the drama understand it properly.

100% this.

I think short term, the narrative needs to be controlled documentary/podcast-style (by an ME friendly), not dramatised - that can come later. Present the desired narrative, use real pwME harmed by GET, present the day-to-day hideousness of this illness, the horror stories many of us have of getting benefits, claiming on insurance, gaslighting by doctors (this is already sounding like more than a single episode).

And, most importantly, don't give the usual suspects the platform to appear all nice and cuddly, the reasonable ones, as they so often try to - if they want to be part of it as a right to reply, they have to be subject to scrutiny of their approaches and harm done, their resistance of agreeing with NICE etc. So, they will not engage, snipe and criticise from the sidelines or try to block such an expose' moving forward..

Dialogues made a great start on some of this.

 

[Trish]

I'm unclear how it would be possible to dramatise that without identifying the individuals and raising balance and defamation issues.

I have been thinking again about this. You would be able to avoid defamation issues by quoting their own words. They were quite open about their views of what causes ME/CFS and their letters to the DWP persuading them to treat us as non deserving of benefits etc are all documented as revealed to via FOI by Valerie Eliot Smith. I've just been watching some of the Dialogues for a Neglected Illness where she speaks about this. And get someone like Prof Brian Hughes in with his outspoken views on the BPS tribe.

 

[Kitty]

So this is extortion with menaces?

Surely quite apart from exonerating these people and compensating them for hardship they should be paid their money back with interest?

Yes, but compensation alone isn't justice, especially if it's funded wholly by the taxpayer. Justice would be the senior managers involved on trial in the criminal courts, the repayment of some performance bonuses, and Fujitsu getting a very large bill.

 

[Robert 1973]

You would be able to avoid defamation issues by quoting their own words.

I was thinking exactly the same thing – provided quotes weren’t used out of context. Their own words are damning. This thread is a useful resource: https://www.s4me.info/threads/simon-wessely-research-related-quotes.1304/

 

[Sid]

I find it a bit depressing to think that we would need to understand the pathology in order for an audience to understand the injustices to which we have been subjected

To you the injustice is obvious since we have the lived experience of inhabiting in a body that crashes when it tries to move. Hard to prove to others without that lived experience that injustice has taken place when we have no understanding of biological mechanism or proof that exercise is harmful. As far as the average television watcher is concerned, it's our word against eminent professors and we haven't yet proven our case beyond a reasonable doubt. There's no smoking gun, no clear villain, no clear good vs. evil narrative. Just a bunch of patients seen to be wanting to live on benefits for decades.

As far as the general public is concerned, ME/CFS is a psychosomatic condition. Therefore, our self-reports of harms from BPS treatments have zero relevance/credibility. PACE reanalysis showed that the treatments don't work but since the BPS trials don't record harms properly, there is no high-quality (RCT) evidence of harm from GET, just patient surveys and anecdotes/testimonies which can be dismissed as ramblings of hypochondriacal people who wish to stay in bed for the rest of their lives for some reason. CBT/GET being shown to be ineffective in PACE reanalysis does not disprove the notion that ME/CFS is a psychiatric disorder. CBT also doesn't do much anxiety/depression (see IAPT) but that doesn't disprove the idea that those are psychiatric disorders. It's just means that CBT is useless pseudoscience. It doesn't prove we've been harmed by it.

 

[Jonathan Edwards]

Yes, but compensation alone isn't justice, especially if it's funded wholly by the taxpayer. Justice would be the senior managers involved on trial in the criminal courts, the repayment of some performance bonuses, and Fujitsu getting a very large bill.

Oh sure, and that as well.
In fact I think the prosecuting lawyers should be put in clink for advising that evidence need not be divulged and so on. I actually think that it should be an offence to attempt to prove someone guilty when you have good reason to think that the evidence does not indicate that they are.

 

[Trish]

In response to the question of whether the public will believe our side when it's told as patients against eminent doctors, I think that's why it would need to be told as equally and more eminent doctors and scientists against a small cabal of pseudo-eminent doctors in collusion with government and insurance companies to deny us medical care and support by falsely portraying us as deluded and malingering.

Just as the post office workers case depends on competent forensic accountants and programmers demonstrating there are real flaws in the Fujitsu accounting program, so our case depends on expert clinicians and scientists demonstrating that there are flaws in the BPS model and treatments. And just as in the post office scandal, it took some outspoken victims of injustice doing the hard slog and competently putting the case to get action.

 

[Binkie4]

There is an article today in the Observer which describes some of the background to getting Mr Bates vs the Post Office to the screen. It is entitled " How hard slog, a webinar and a bike rack brought the story to TV".

https://www.theguardian.com/uk-news...-mr-bates-vs-the-post-office-to-the-tv-screen

There were many steps on the way and a lot of hard work including the Computer Weekly breaking the story in 2009, finding a publisher for a book after a long search, BBC Panorama's involvement, a webinar during covid, Private Eye, a newsletter about the scandal with subscribers and a dollop of luck when someone involved turned out to have shared a bike rack with ITV Studios creative director, Patrick Spence which gave him the opportunity to email him.

It's an interesting story.

edit: more discussion in https://www.theguardian.com/uk-news...ies-to-bring-the-post-office-scandal-to-light- no paywall

 

[Robert 1973]

There were many steps on the way and a lot of hard work including the Computer Weekly breaking the story in 2009, finding a publisher for a book after a long search, BBC Panorama's involvement, a webinar during covid, Private Eye, a newsletter about the scandal with subscribers and a dollop of luck when someone involved turned out to have shared a bike rack with ITV Studios creative director, Patrick Spence which gave him the opportunity to email him.

Thanks. I was forgetting about the book. A really good book would be a good stepping stone for us. But I won’t start cajoling Jo again. [Edit: yet!]

Another thing occurs to me reading the article, which is has probably been said above, but it is astonishing how long it took for the PO scandal to gain traction with the media and to be properly addressed when the facts and injustices have been established for so long. In that context, it’s easier to understand why it’s so hard for us to gain traction when the facts and injustices are that much harder to convey.

 

[Robert 1973]

I suspect that there is a signal sitting in peripheral tissues that talks to the brain via peripheral nerves and prevents energy production rather than there being a defect on the production mechanism itself. In myasthenia the hidden interference affects a motor nerve.

Sorry this is off topic but I’m interested that you refer to signal interference. This reminds me of a discussion I once had with an ME consultant. As that stage (about 7 years into my illness) I had had no contact with any other ME patients, largely due to my own prejudices and because I had been advised by doctors to have nothing to do with any patient organisations “because you have an organic problem and most of them are just depressed” (classic isolation and denial tactics used by the Post Office). The consultant I spoke to (Dr Hyams) seemed to have a good understanding of how I actually was, which was refreshing. I remember telling him that I never feel lethargic, despite having been 99% bed-bound for 5 years, which he seemed to completely understand. I don’t know if he was referring to any particular studies, but he told me that the cognitive dysfunction in ME/CFS resembles electrical interference – like listening to an analogue radio with bad reception. To me, this is exactly how it feels. Listening to a radio with bad reception, there comes a point when the interference is so bad it’s unpleasant to listen to. But if you’re desperate to listen because the information is important, you can strain to keep listening through the inference.

For my experience, interference is a much better description than brain fog, which to me implies a more of a bluriness, which I never get.

Maybe I should start another thread on this. I’d be interested to know if others have the same experience or not.

 

[CRG]

I was thinking exactly the same thing – provided quotes weren’t used out of context. Their own words are damning. This thread is a useful resource: https://www.s4me.info/threads/simon-wessely-research-related-quotes.1304/

The devil would be setting the context in a meaningful narrative that doesn't suggest imbalance. The more that one seeks to get around a narrative problem the more ungainly and abstruse the drama tends to become - fine if one is telling an involving detective story, but perhaps more problematic if trying to get across a contested medical issue and mistreatment.

 

[Kitty]

The more that one seeks to get around a narrative problem the more ungainly and abstruse the drama tends to become

Whilst I've been saying that the ME story is very different to Mr Bates vs the Post Office, it was interesting that in that dramatisation, most of it was scripted by a writer but Paula Vennells' own words were used throughout. That was very powerful.

 

[FMMM1]

Oh sure, and that as well.
In fact I think the prosecuting lawyers should be put in clink for advising that evidence need not be divulged and so on. I actually think that it should be an offence to attempt to prove someone guilty when you have good reason to think that the evidence does not indicate that they are.

Yes & I think Fujitsu should be investigated & not just the minions - the board etc. I think the Post Office's legal Department should be asked why the settled a case i.e. where the evidence showed there was a problem with the horizon system - yet they continued prosecutions +++.

Is this more common in the UK system versus e.g. France?

 

[Kitty]

Is this more common in the UK system versus e.g. France?

Private prosecutions (those not pursued by police or law enforcement agencies) might be more common here, I'm not sure. They can be a good thing—animal and wildlife charities often have to bring them, because in some cases there's not much chance of the police acting.

But there isn't the same oversight. If the police want to bring a prosecution, the Crown Prosecution Service won't proceed unless there's a reasonable chance of winning the case on available evidence, and prosecuting it is in the public interest. That's far from perfect (it's part of the reason pathetically few rape cases ever get to court), but at least the evidence is examined by someone not directly involved. Would it have stopped the Post Office? Hard to say, because sometimes people do commit theft and fraud. However, an external body would at least have had chance to spot a pattern or ask questions.

 

[Jonathan Edwards]

My guess is that the suggestion that has been made that there is a problem with private prosecutions is a malicious red herring brought up by government and legal interests. Private prosecutions seem to me to be a very good thing.

The problem I see with the PO case is that the system allows lawyers to pursue cases that they know are unjust - or would know if they were competent and ethical. If lawyers had known that they might be imprisoned themselves if they advised clients to break the law - as in not disclosing vital evidence - then things would have been different.

As for France, my understanding is that in several types of case they use an inquisitorial system rather than an adversarial one. That avoids the business of lawyers overstating a case. A charge is placed before a judge who then examines the evidence without any prosecution or defence sides. Maybe that also avoids having a prosecution service that does not take charges to court if it thinks the chances of a verdict in 'their favour' is poor.