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

[Robert 1973]

I havent followed the thread too ill so apologies if this is already said. But i think its a potential nightmare IN THE EXTREME to try to get anyone interested in a drama at this stage - until we have uncontrovertible proof that ME/CFS is organic.

I think its highly, highly likely that you will end up with a 'success story' or a harassed/abused scientist story. Id be shocked to discover that isnt already being pitched. I really think we need to keep schtum (in this context) until we can prove the Wesselys of this world are wrong. And by 'prove', i mean prove... not the "4000/5000/9000 published papers proving biological abnormalities" line that gets trotted out by a lot of advocates and makes me cringe every time i read it.

I understand your point but I disagree. It would be a nightmare if it was done by someone who didn't understand the issues properly - even if they thought they were on our side - but I don't think we need to understand aetiology in order for people to understand the injustices. In fact, I think that should be part of the narrative.

The whole point of the valid arguments against the CBT/GET models, which resulted in the rejection of CBT and GET in the NICE Guideline, is that one does not need to understand the pathophysiology in order to show that CBT and GET are ineffective and harmful - and that the research into these interventions have been flawed, arguably fraudulent, and grossly misrepresented.

 

[Adam pwme]

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.

 

[JemPD]

if it was done by someone who didn't understand the issues properly

I hear you, but i simply dont believe that person exists - they'd already be doing it, or can be coached/educated until they do. The issues, in order to get it accurate, are way way too complex to understand.

The whole point of the valid arguments against the CBT/GET models, which resulted in the rejection of CBT and GET in the NICE Guideline, is that one does not need to understand the pathophysiology in order to show that CBT and GET are ineffective and harmful - and that the research into these interventions have been flawed, arguably fraudulent, and grossly misrepresented.

Those are the valid arguments yes.... but the majority of patients/advocates dont even understand them... As is evidenced by them trotting out the 'its real', 'its physcal' 'its not all in our heads', 'its not psychological' 'X paper shows that its physical', '9000 papers showing biological abnormalitiy', 'CBT GET dont work because its not a mental health problem' stuff.

Sorry i just think it's wishful thinking. The complexity and difficulty in grasping the point is one of the reasons that we have difficulty with the media imho. PArticularly when so many of those who understand the horrors/injustices of the situation are those who use the above arguments.

I'm not saying its impossible - look at the Times articles recently since poor Maeve - I'm just saying that unless we know someone who can really get to grips with this, who can also get all the other people who would have creative/editorial control to get to grips with it, it always risks getting hijacked & coming to be a negative thing for us.

Myreason for wanting to wait until we have proof, is partly because if i have something which is proven to be organic, i can no longer be sectioned because some moron psych beleives i bedbound for secondary gain etc, & therefore if they make some stupid hideous hash of it, misleading everyone, then it is only public opinion that is simply helped along in what they already think. The Dr cannot section me for believing i am ill - because i can prove i am.

Id ask that it not be done until then, because although getting it right could be brilliant. Getting it wrong - which i am certain is 1000 times more likely than getting it right, is simply too risky.

I mean if we knew someone then ok, but the whole 'mind-body' paradigm is so sexy right now, ugh it makes me feel sick what horrors they could unleash upon us. You've only got to look at how those poor people on that awful netflix programme, forget its name, where they were portrayed as a bunch of nutters & were lied to during filming bout how they were going to be portrayed.

Its the editor who needs to understand it all.... as well as the director, the producer, whomever's funding it, the writers and on it goes.

Look if i win Euromillions tonight i'll hire some people to make the drama, and everyone involved will have to have an S4 education for 6mnths then spend time with several people with ME etc etc, and S4 will be given editorial approval... ok? But otherwise... it terrifies me. And i'm certain we've had this discussion before... i'm sure i'm getting de ja vu about it. Perhaps i am just scared because i'm alone & vulnerable

 

[JemPD]

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.

You see, clearly my numbers will be the winning ones in tonight's draw, because Adam is already planning how to spend my money in prep for it

 

[Robert 1973]

I understand all your arguments @JemPD and share your concerns but I am more optimistic that it is doable. There are a lot of smart people out there and the valid arguments aren't difficult to understand if people take to time to read the literature. Remember Mike Godwin. Remember @dave30th, who as far as I remember initially wrote an article about ME/CFS that was inaccurate and then took it upon himself to learn more after he was contact by Tom Kindlon (I think). Remember also that Sean O'Neill, who is largely responsible for the excellent coverage in The Times, was initially on the wrong side of the argument. In one article he wrote:

“My daughter Maeve succumbed to ME in her teens and died, aged 27, in 2021 after the illness became severe and totally debilitating. She struggled to get doctors and social workers to understand. And for years I also found it hard to accept and understand her illness. I wanted her to try exercise programmes (then recommended as a treatment) and wondered what trauma had caused her condition. For too long I believed the medical orthodoxy, and that strained our family bond." (https://archive.ph/fjdMi#selection-851.0-855.71)

But you're right that could be a disaster if it was written by the wrong person/people and sadly there are many people on our side of the BPS divide who get lots of the arguments wrong. I would love to have a go at doing it myself if I was a bit better.

 

[Jonathan Edwards]

There are a lot of smart people out there and the valid arguments aren't difficult to understand if people take to time to read the literature.

Yet it has become clear that the majority of the medical profession, including most of the Presidents of the Colleges, irrespective of whether or not they can 'understand' the arguments, would view any presentation of the case as whingeing nonsense - because they have 'seen the treatment work'.

I agree with JemPD, we are not yet at a point where either journalists will make a decent case or the public will accept it. Maybe soon we will be. Let's hope so.

 

[JemPD]

I understand all your arguments @JemPD and share your concerns but I am more optimistic that it is doable. There are a lot of smart people out there and the valid arguments aren't difficult to understand if people take to time to read the literature. Remember Mike Godwin. Remember @dave30th, who as far as I remember initially wrote an article about ME/CFS that was inaccurate and then took it upon himself to learn more after he was contact by Tom Kindlon (I think). Remember also that Sean O'Neill, who is largely responsible for the excellent coverage in The Times, was initially on the wrong side of the argument. In one article he wrote:

yes they are great people who have grasped things, but out of how many who've been contacted to explain theyve made a mistake? out of how many whove been recommended to read the literature, whove been sign posted to the info, how many have actually read it and understoof it? The ones that get it, who have actually followed the sign posts and also understood and been able to repeat the arguments are few & far between, otherwise the landscape would be very different. So the odds make me much more pessimistic.

I wish you were well enough to have a go too!

 

[Sean]

Sadly, I have to agree with @JemPD. The risk is too high at this point.

We don't have a solid evidentiary case yet about the causes and pathophysiology.

The people responsible for this brutal catastrophe are still very much in power and highly influential, and have made it abundantly clear they will do everything they can to hijack and pervert any attempts to set the record straight, including bald-faced lies.

Lastly, this story is incredibly detailed and convoluted, with huge momentum to overcome across all levels of governance and society, and the amount of work required and resistance to overcome to tell it accurately and fairly is enormous. It is also going to be very emotionally draining for even the healthiest and most robust and committed of investigators and storytellers. No small task.

We do have a growing number of reports from the highest levels of medical scientific authority around the world stating clearly that ME is not a mental disorder. That is a good starting point.

 

[Sid]

I couldn’t agree more @JemPD. We have no solid evidence of a pathophysiological mechanism. The cringeworthy “5000/6000/9000 published papers” line needs to stop. I think a documentary at this point would be a disaster for us. SW et al. would simply need to point to the unreplicated mess of low quality biological research being trotted out as “proof”, or the statements being made by the likes of OMF and CCI people etc. to portray us as insane/stupid.

 

[CRG]

For anyone wanting to get to grips with the legal background to the PO isssue - this blog by lawyer David Alan Green plus some very useful comments, is a good intro: How the legal system made it so easy for the Post Office to destroy the lives of the sub-postmasters and sub-postmistresses – and how the legal system then made it so hard for them to obtain justice

This is a key part of the underlying 'PO scandal' narrative and which to date isn't present for any narrative of ME/CFS. Criminal prosecution is public matter, the injustice of wrongful conviction is there to be seen by anyone who cares to look. Medical treatment is private, establishing wrongfulness in treatment is largely a private process and only when an exceptional intervention is made - public enquiry, legal case etc does the wrongfulness enter the public sphere.

On a different note but an interesting aspect of the dramatisation of the PO scandal is the gender allocation of roles - these are provided by real life but this can't be discounted from influencing how the story is received. The title of the dramatisation uses an established trope using Mr in its title, "Mr" and "Mrs" has been used in many film titles - "Mr. Smith Goes to Washington", "Mrs Miniver" etc - it's a neat trick in establishing a character and/or the character's authority in just two or three letters. In the case of 'Mr Bates vs The Post Office' we have a clear establishment of a single male individual who is set in conflict with large institution - hero versus monster, this despite the fact that over half those affected by the PO's behaviour where female managers and sub Post Mistresses.

Opposite Mr Bates, in the corner of the monster is, unusually in UK businesses a female executive - an unsympathetic character who is established everyday in the unfolding media story as the archetypal 'wicked witch'. It is in media terms a story which writes itself because so many prejudices fall neatly in line. Narratives whether documentary or dramatic often depend on their public reception for the presence of well established tropes and prejudices. This plays both ways - heroine not hero may reduce the appeal or vice versa, ditto warlock versus witch. The fact of injustice is not in itself a guarantee of a well received narrative too often it has more to do with the collective prejudices of the audience - and that is what fiction writers are free to play to. Makers of documentaries and real life dramatisations do not have the luxury of making things up, sometimes they get lucky and the story plays seamlessly to the audiences prejudices, more often success is down story selection; what may look a good story to the sufferers of injustice may look like a dead end to a Producer.

 

[Robert 1973]

I agree with JemPD, we are not yet at a point where either journalists will make a decent case or the public will accept it. Maybe soon we will be. Let's hope so.

What do you think would be the tipping point?

I’m not saying that you @JemPD, @Sid @Sean and others are necessarily wrong but 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, and the unethical conduct of many who are sworn to do no harm.

If I was writing drama I would have a scene where this exact point was spelt out in a dialogue – one person explaining to another, or perhaps to an audience, that you don’t need to understand the pathology in order to know that an intervention doesn’t work and is harmful, to treat patients with dignity and respect, to understand disease burden, invest in high quality research, and to provide appropriate care and support for patients.*

Remember the testimony from that Emma Shorter gave to the Scottish parliament? Remember the testimonies that have been posted on Hilda Bastian’s feedback page.** I can’t see how any thinking person could not been moved by them. Remember too that we succeeded in persuading UK MPs of the mistreatment we have endured, when they unanimously supported Carol Monaghan’s motion in the Commons debate.

In my imaginary drama, I would also highlight how much misinformation there is out there on the biomedical side too – showing desperate patients paying thousands of pounds for useless and in some case harmful treatments. And I would make the point that if all the money that patients have wasted on ineffective treatments had been invested in high-quality research we would probably now know a great deal more.

As I said, I would probably make Tom et al and the villain the central figures, but I would almost certainly make you a prominent figure. To me, you represent the disinterested scientist. I find it hard to believe that any intelligent person could read your testimony to the NICE guideline committee and not be persuaded by it.

But I’m not well enough to write a drama and you are probably all right that the chances of someone doing it well at this stage are very low and the precautionary principle should probably be applied.

At some point I’m hoping to write a follow up to my book with a focus on the science and politics behind the injustices. Maybe someone will dramatise that – preferably without portraying me as “a self-centred twit” as one reviewer kindly referred to me.


* I would also have a scene where an eminent psychiatrist was openly ridiculing ME/CFS patients for laughs at a private talk for GPs. I know that this happened because a medical professional in my family attended one of these talks when I had been bed-bound for about 2 years. They were so traumatised by it that they weren’t able to tell me until several years later.

[Edit: ** links to testimonies:

https://www.s4me.info/threads/cochr...da-bastians-talkpage.36153/page-5#post-504245

https://www.s4me.info/threads/cochr...da-bastians-talkpage.36153/page-7#post-505129

]

 

[Trish]

I would also have a scene where an eminent psychiatrist was openly ridiculing ME/CFS patients for laughs at a private talk for GPs. I know that this happened because a medical professional in my family attended one of these talks when I had been bed-bound for about 2 years. They were so traumatised by it that they weren’t able to tell me until several years later.

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.

 

[Jonathan Edwards]

What do you think would be the tipping point?

There needs to be some single piece of evidence equivalent to finding anti-AChR antibodies in myasthenia that make sense of things, probably in an unexpected way.

The Dutch muscle study may be telling us something important but I worry that it finds what people think they ought to find, and in experiments that may be subject to variability and sampling problems it is all rather hard to pin down.

I suspect that taking bits of tissue, or cells, out and looking at their metabolism will tell us little or nothing. 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. In ME I wonder is oemthing equally hidden affects sensory nerves - which through reflex loops inhibit motor nerves again.

People can understand things and go off and behave as if they don't. Life is full of it.
The Post Office story works because we know what happened - the computer kept taking away money every time the button was re-pressed without any indication it was doing that.

 

[Robert 1973]

Mr Matthees v Queen Mary’s University London?

 

[JemPD]

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, and the unethical conduct of many who are sworn to do no harm.

If I was writing drama I would have a scene where this exact point was spelt out in a dialogue – one person explaining to another, or perhaps to an audience, that you don’t need to understand the pathology in order to know that an intervention doesn’t work and is harmful, to treat patients with dignity and respect, to understand disease burden, invest in high quality research, and to provide appropriate care and support for patients.*

but this is precisely the point... that YOU wouldnt be the one doing it. Its not the audience thats the problem, an audience can understand anything if its presented correctly, the issue is that ALL the makers of the programme have to understand, before it is made, because they all have influence. At minimum you have to have the writers, the director & the producers, all understanding it. And resisting pressure from incredibly powerful people, not to do it, but to tell a different story, a story which, on the face of it, is much easier to understand. The 'story' is easy to swallow because it confirms what everyone already thinks & wants to believe. The truth is much more complex, and simply "cant be true... right?" I mean how can it be?

Educating enough people, to not just understand the reality, but want to risk their careers & livelihoods to share it... Not going to happen until you take the ammunition largely out of the BPS gun. It doesnt matter if you have a good writer, the writers arent in charge, but the producer isnt capable of writing it. And who's footing the bill, ultimately its them who will have editorial control.

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.

This makes total sense to me in terms of my experience, particularly because a rush of anxiety or anger is capable of overcoming it. surely if the energy production mechanism itself were the problem adrenaline would have no effect, where as, for me at least, it isnt a cure but it does make a massive difference to everything - muscle strength, co ordination cognitive ability, improves sensory sensitivity... etc Do certain signals get affected by adrenaline/stress hormones? ie dampened by it?

Sorry off topic

 

[rvallee]

In contrast Wessely has numerous friends across a wide academic and political field, in person (I'm told) he's a pleasant, somewhat quiet professorial type, he's never earned £millions or caused people to be sent to prison, his anti patient story telling is reprehensible but doesn't have the immediacy of sending in auditors to destroy someone's livelihood based on false evidence.

There is a closer comparison to Theranos and Elisabeth Holmes here. Despite having no discernible talents, somehow she managed to smooth talk her way into being praised as "The next Steve Jobs" (true story) on magazine covers and raise billions for a fake product.

When you look at Wessely's career, you pretty much find nothing substantial, and yet he was knighted, elevated to positions of influence on the basis of his image as having accomplished a lot. Same with Michael Sharpe. What has he accomplished? Look at his career and it adds up to nothing. And both keep being handed participation awards, in large part because they managed to con their own peers into pretending they accomplished a lot, which is too embarrassing to admit, as it can't be an isolated con like Theranos.

Theranos was ultimately exposed by whistleblowers, which is not going to happen here. The medical profession is simply too broken for that, unlike a shady high-tech startup managing to raise billions from high-profile investors. And that's really a big part of the story. Wessely, Sharpe and the other quacks aren't anomalies, they are part of dysfunctional and corrupt system, one that is incapable of producing whistleblowers because it's so deeply broken that almost no one working in those systems even sees the dysfunction and corruption.

They didn't earn millions, but they did play with millions, entirely to their benefit and at the direct expense of their victims. And they didn't send anyone to prison, but they didn't even need to raise a finger for people to be imprisoned anyway. That we are imprisoned in our bodies makes little difference, but it adds to up millions and the number of lost lives completely dwarfs both the PO and Theranos scandals by a long shot. Accounting for the whole of it around the world, it even dwarfs the economic and financial losses involved. Although this is not the product of just two people, had they never existed it would have likely turned out the same, because the dysfunction and corruption are fundamental to the system and how it works. It started long before those two were born, and if technology stalled and made progress impossible, would simply continue indefinitely.

That's a complex story, and I don't think the public is ready to hear it, because it sullies the whole of medicine. And rightfully so, which makes it even harder to accept, because this is far from an anomaly, it's how that system is built to function and all of it was a choice out in the open. From my understanding the PO scandal is over. The ME scandal is in full force, as bad as it ever was, and massively larger now with LC. This is not hindsight, it's the middle of the storm.

 

[Jonathan Edwards]

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

The Post Office claimed that money was being siphoned off. Yet it is clear that no money went into the operators' accounts. The errors digital so it wasn't that cash had been handed out.

It seems as if the software logged that the Post Office had been debited and someone with a bank account had been credited. The someone's bank account presumably was only credited for the right amount, so the Post Office account would only have been debited the right amount by their bank. So the Post Office was claiming that money had been lost when in fact it had lost nothing and was doing very nicely thank you.

To me that is straight fraud if known about and extraordinarily incompetent accounting if not. The system was creating non-existent negative money and the PO was asking for it back.

 

[Kitty]

The Post Office story works because we know what happened

This.

People knew Horizon wasn't fit for purpose from Day 1.
They knew engineers were making adjustments that sub-postmasters couldn't see.
They decided to blame the operators because there was too much at stake to expose the failures.
They deliberately and persistently isolated individuals by lying about them being the only one involved.
They used the law courts to have sub-postmasters jailed and bankrupted to hide their own incompetence.

If Fujitsu and the Post Office had been willing to deal with the problems, that scandal wouldn't have happened. The outrage is because people manufactured the whole thing to protect their own wealth and standing.

I don't think the ME story is the same.

People with ME needn't have been gaslighted and there didn't need to be so much crap research, but we can't say the cause of the symptoms would have been uncovered by now with more effort and funding.

Even if the BPS model had never existed, we might still be ill anyway. Nobody manufactured our illness for profit and then tried to cover it up.

 

[CRG]

At minimum you have to have the writers, the director & the producers, all understanding it.

The key there is Producer whose primary understanding is of the questions: Will this get an audience ? Will the audience size/demographic satisfy the Board and/or the subscriber Dept' and/or the Advertisers, Will the subject matter satisfy the Programme Commissioner's Business Plan and/or the subscriber Dept's recruitment plan and/or the Advertising Dept's strategic reach plan ? & Can this be acchieved within the available budget ?

Writers and Director have to make a product that fits a Producer's determination of what the commissioner wants; with dramatisation you can get a Mr Bates or you can get a The Crown - the last series of which had to carry "this is fiction" notice, depending what it is the commissiong company demands.

 

[Caroline Struthers]

I would also have a scene where an eminent psychiatrist was openly ridiculing ME/CFS patients for laughs at a private talk for GPs

How about also including a fictionalized version of the Sharpe talk to baby psychiatrists (??) about needing to urgently train up people to do CBT on anyone and everyone because the IAPT scheme had created insatiable "selling like hot cakes" demand?