"You and yours" BBC phone in on "chronic fatigue" -26 sept

[Chrisb]

Now that the dust has settled a little it might be interesting to reflect on what this programme tells us about the BBC and its views towards ME.

The impression that I had was that the first 40mins or so were good. The presenter and journalist understood and empathised with the problems. Charles was allowed to give probably as good an explanation of the illness as has ever been broadcast on the BBC.

The change, when it came, was very abrupt. That's enough of that, now we have to say this. The dislocation was unnatural and seemed to be imposed by strong editorial control, rather than the natural flow of the programme. It would be interesting to know what representations were made to the BBC, what discussions took place, and who was party to any discussions during the run up period.

It seemed very obvious that Charles was blocked from making any comment on LP, or EC's research. It will be interesting to know if that was a pre-agreed condition.

The overall message I took was that ME is a serious condition, there have been no effective treatments, but don't worry guys, LP might offer hope. Public service broadcasting at its best. Who needs an advertising budget when there is the BBC?

The feeling I got, and I might be wholly wrong, was that somewhere high within the organisation there is an obstruction to proper reporting.

 

[Londinium]

The change, when it came, was very abrupt. That's enough of that, now we have to say this. The dislocation was unnatural and seemed to be imposed by strong editorial control, rather than the natural flow of the programme. It would be interesting to know what representations were made to the BBC, what discussions took place, and who was party to any discussions during the run up period.

Agreed, it was a very sudden change. I wonder if somebody from the SMC or similar saw that the MEA were due to appear and asked for their person to be included at short notice. That's how it felt - the LP segment sandwiched into the end and a little off-topic: the programme was about the NICE guidance and how people are being let down by the NHS and then suddenly there's a segment on LP, which isn't being offered by the NHS at the moment so is irrelevant.

 

[Snow Leopard]

I don't deny that any illness feels worse if one is stressed or similar.

I tend to feel physically slightly better when feeling psychologically stressed - more energetic, less severe symptoms etc. Am I the only one?

The problem is afterwards...

 

[NelliePledge]

It seemed very obvious that Charles was blocked from making any comment on LP, or EC's research. It will be interesting to know if that was a pre-agreed condition.

there was a post on twitter or facebook from MEA account (ie Russell) saying that Charles was only told during the programme that EC was involved.

this

https://twitter.com/i/web/status/912764351802740738

I believe this will have been a SMC ambush - it may be that the you and yours had been planned for a few days - SMC got wind and insisted that "for balance" EC be shoehorned in

Edit @Londinium was quicker off the mark than me with this point

 

[Jonathan Edwards]

The feeling I got, and I might be wholly wrong, was that somewhere high within the organisation there is an obstruction to proper reporting.

The way I heard it was 'oh yes, x knows Simon very well'.

 

[NelliePledge]

15 minutes

oh was it that long I shut my ears to it im afraid and thought it was shorter

 

[NelliePledge]

The way I heard it was 'oh yes, x knows Simon very well'.

difficult to overcome - has X got a boss the Countess could invite for tea at the House of Lords

 

[lilpink]

It seemed very obvious that Charles was blocked from making any comment on LP, or EC's research. It will be interesting to know if that was a pre-agreed condition.

I agree. In any normal political discussion the opposing proponents would be allowed to exchange ideas in a back and fore parrying way. So much could be asked of EC couldn't it? Including my question in my post above apropos her comments on sleep and changes in physiology wrt to LP and her other 'treatments' at Bath (actually have any of her patients, as research subjects, been through any sort of sleep testing process at all? I think that's an interesting question to ask. Anything in the literature?). . It seems she's very careful not to be placed in a position where she can be cross questioned. Hardly surprising.. if I had had to rely on her body of 'work' to substantiate my answers under close cross questioning I'd want to run for the hills too. She is a sham, and on some level she knows she is... she must know she is (her ability to strategize gives the game away) whatever stories she tells herself in her mirror of an evening when she removes her macquillage and looks her conscience in her face...

What really angered me wrt the program presenter was that having heard the litany of suffering expressed very well by most of the patients who rung in to provide their own very tragic stories, she switched so quickly from 'listening mode' to an 'endorsing-and-building-on-your-paradigm-without-question' mode when EC started prattling on about the mind and body connection. As a supposedly impartial interviewer she should have asked about the science and evidence on which such a construct can be made instead of which she seemed to collude with EC saying at approx 39 minutes: "I think it's fair to say isn't it, that in the West we tend to separate this mind-body thing, but in other parts of the world people don't do that'. It opens up such a huge can of worms which EC can easily lose herself in because her phoney work is now being given the 'credibility' of presumably huge swathes of the world who view body and mind integration in a different way but without any critical analysis of that as a construct at all. It's absurd. It's simultaneously giving EC a very big 'out' so that she can hang her work on this huge 'philosophy' and avoid being interrogated about how that actually works in people with ME and using her treatment modalities. It becomes an 'accepted truth' rather than a case to answer. In fact it's a case of 'leading the witness' isn't it?

 

[Chrisb]

I believe this will have been a SMC ambush - it may be that the you and yours had been planned for a few days - SMC got wind and insisted that "for balance" EC be shoehorned in

That's what I suspected, but where exactly in the first part of the programme was anything that needed counterbalance from EC? What was so controversial that she needed to insist on having her voice heard?

There was no criticism of her or of LP. There seems to be paranoia setting in, and the trained poodle in BBC management panders to it.

 

[NelliePledge]

That's what I suspected, but where exactly in the first part of the programme was anything that needed counterbalance from EC? What was so controversial that she needed to insist on having her voice heard?

There was no criticism of her or of LP. There seems to be paranoia setting in, and the trained poodle in BBC management panders to it.

agreed but they will still have used that argument

 

[arewenearlythereyet]

I suspect that the BBC has a policy to protect researchers from cross examining "vexatious activists".

 

[NelliePledge]

I would have expected a consumer programme - which is what you and yours is I believe - doing a segment about LP research to at least have researched LP and ask a question about the Advertising Standards Authority ruling


I may have already made this point apologies if I have

 

[PracticingAcceptance]

Thank you @Londinium , I agree with pretty much everything you said!

However, this valid criticism of the concept of mind and body being separate is then immediately replaced via a bait-and-switch into the far more scientifically dubious 'the mind can heal the body'.

If only people could understand the difference readily.

Under the mantra of informed consent, calling a placebo a cure in order to make the placebo effect more powerful is generally considered unethical. And if a private firm marketed a placebo - to paying customers - and then said 'well we called it a cure to increase the placebo effect' I doubt Trading Standards would take too kindly a view.

Totally. I got halfway through the LP book and had a real moral dilemma about this issue. I'm not sure if I'm comfortable with making myself believe in something in order to make it work. It ought to work on its own merit. I understand why forcing myself to believe something could help it work better, but it feels weird.

Reiki and all that... I've tried it. It does genuinely help people that believe in it, but it's not a real cure. I'm with you in putting LP in that bracket in terms of it being something that supports people that believe in it. If the magical bits were taken away. I wonder if it could be taken as seriously as a CBT tool. I see the value in NLP, just not to the extent that it's being sold. It's the whole package around it that makes me uncomfortable, and does seem unethical.

The fact this is a semi-secretive process that you only find out about once you've paid your fee is a massive red flag.

Yes exactly!

 

[PracticingAcceptance]

On the programme as a whole... my parents will have been listening, and my friends of an older generation than me. They will have got a bit of an insight into what it's like for me to live like this, which is great!

They are likely to say now, have you tried LP? And I'll have to explain a bit more to them. People helpfully want to focus on solutions, but there aren't really any right now.

Part of accepting my illness is accepting that there isn't a cure right now, and the best thing I can do is manage it as best I can. This is an alien idea to healthy people who can't fathom not having a treatment for an illness.

 

[Snow Leopard]

It's so disappointing that whenever nonpharmacological treatments are criticised*, instead of listening to what is being said, we are instead told that we believe in mind-body dualism and we are somehow wrong as a result.

So what? Most patients agree that the mind and body are inherently connected.

We are not discussing philosophy, we're discussing efficacy and mechanism.

Why do so many psychiatrists and psychologists keep dredging this philosophical point of view when criticised, when it is usually not directly relevant to the criticism in question?

*(because they don't work and they don't bother conducting unbiased studies to test them)

 

[Mrs Sowester]

I would have expected a consumer programme - which is what you and yours is I believe - doing a segment about LP research to at least have researched LP and ask a question about the Advertising Standards Authority ruling


I may have already made this point apologies if I have

That is a very good point. It's certainly worth contacting the program and asking them to look into LP. They are always chasing ratings at the BBC and will probably want to follow up after the interest they received yesterday.

 

[trishrhymes]

I found the tone and content of the Crawley interview at the end so disconnected from the rest of the program, I thought it was probably pre-recorded earlier in the day, and I guess with the proviso from Crawley that she must be last on the program with no chance for Charles to rebut what she said.

 

[Mrs Sowester]

It was heartening to hear the researcher saying they'd had loads of emails saying the Lightning Process wasn't good.

 

[MeSci]

Yes, it's on The Film Programme:



Edit:
http://www.bbc.co.uk/programmes/b095tjvy

Looks like Jen is the only guest?

I've created a thread on it here: http://forums.phoenixrising.me/inde...on-bbc-radio-4-thursday-28th-sept-2017.54651/

 

[Wonko]

Why do so many psychiatrists and psychologists keep dredging this philosophical point of view when criticised, when it is usually not directly relevant to the criticism in question?

Get out of jail free card, they could equally say "my elephant wears green cheese pyjamas while making toast" and it would have the same effect, it's so absurd that it shuts the conversation down while people attempt to process and get over the "wrongness" of it.

Of course they may sound a bit odd to the general public lol