BBC interview with Ron Davis

[Barry53]

@charles shepherd
I am just wondering if you know if they have also interviewed/intend to include Esther Crawley as they asked IiME if she was at the conference.

One step at a time. I know there have been innumerable false steps along the way, and I am one of the natural sceptics on all this, but from what @charles shepherd says this just may be a good first true step, and will be wonderful if it is. As well as being a sceptic I am also an optimist, so I'm going to give my optimist's side its head here for the moment. Bring it on BBC ... don't let us down here!

Edit: Thank you by the way @charles shepherd.

 

[Starlight]

Thanks Charles Shepard,that sounds like a big effort on your part and I hope it will become a turning point for us all.,( even a small one),.many thanks.

 

[daisybell]

Fingers and toes crossed........

 

[Deepwater]

@Janet Dafoe (Rose49) does Ron know that the controversy, doubt, psychiatric bias surrounding ME/CFS may be intentionally fabricated by tobacco scientists defending the interests of the health insurance industry? And possibly that of pesticide producers as well (exposure to organophosphate pesticides seem to sometimes lead to a syndrome that is very similar to ME/CFS).

This is relevant because if true it would imply that we will never be able to convince Wessely and the others. Their job would be to literally disbelieve anything that isn't industry friendly. It would imply that the correct course of action would be to point out the conflicts of interest and ties to the insurance companies and the abysmal quality of their science. In other words, not polite debate but aggressive debunking of their fake science. The OMF is primarily a research organization but it could include in its press releases and material explanations as to why such and such finding is at odds with cognitive behavioural models for example.

Well yes. There's no doubt in my mind that ME denial is, at the top echelons of the British Establishment, a policy decision not a misunderstanding. That is why nothing ever changes - and won't until there is a party in power which is prepared to uncover the scandal.

 

[Henry A]

I hope it is fair - I used to be a journalist and can tell you that simply being interviewed does not put you in editorial control of the story.

 

[Barry53]

A long time ago when abroad, I watched some ants near their nest (basically a hole in the sand) which had trapped a dung beetle. The dung beetle was pointing away from the hole, and was much too big for the ants to manhandle it into the hole themselves, but their technique was fascinating ... though I confess I did feel a little sorry for the poor dung beetle. What the ants did was to pin down all four front legs and one of the back legs, which they dragged sideways as far as it would go. Then they pinned that leg down and did the same with the other back leg. As they kept repeating this process, the poor beetle was slowly turned through 180° so it was pointing straight into the hole. It then looked like the beetle was only able to move forwards and ended up going down the hole.

It's a bit like that here. Maybe this BBC interview will be a step along the way to turning this dung beetle round?

 

[Barry53]

Well yes. There's no doubt in my mind that ME denial is, at the top echelons of the British Establishment, a policy decision not a misunderstanding. That is why nothing ever changes - and won't until there is a party in power which is prepared to uncover the scandal.

Or there is enough people/advocate power to not give them a choice.

 

[Jo Best]

I hope it is fair - I used to be a journalist and can tell you that simply being interviewed does not put you not in editorial control of the story.

Agreed, and nor the journalist that's done the leg work . It's all in the way the final programme is edited.
I know the journalist concerned. but the editorial control is key.

 

[Jo Best]

This thread is quite interesting in that it's clear that the media aren't the only ones adept at spin.

 

[TreePerson]

The BBC is aware of some of the new research findings (rituximab, metabolomics etc) but this is not part of the programme

There is a limit to what you can squeeze into 40 minutes!

The BBC is aware of some of the new research findings (rituximab, metabolomics etc) but this is not part of the programme

There is a limit to what you can squeeze into 40 minutes!

I understand that it's not what the programme is "about " but I would hope it would get a mention. I really don't see how the huge difficulties and mistreatment faced by both children and adults with ME/CFS the PACE trial etc, can be placed in context without reference to both the historical lack of biomedical research/funding and current promising research which make clear the blockages in energy metabolism and the physical nature of the disease.

 

[taniaaust1]

its not working, its not playing for me.

 

[MeSci]

its not working, its not playing for me.

What isn't, Tania? It's not clear (to me anyway) from your posting.

 

[TillyMoments]

Just spoken to Nicola Dowling, who is doing a program with Matthew Hill from BBC and mentioned Ron's interview, they are doing a 45 min program. Have also spoken about the abuse the children and their parents receive. I believe that they are doing much better research into ME; asking how it started with my son, how the GET impacted on him and how I was treated. Lets hope the stories come out together. I think this is for Radio Four program Dr Sheppard is in? They have talked to Tymes Trust amongst others.

 

[Esther12]

I think it makes sense to avoid trying to discuss promising alternative research when talking about the problems with CBT/GET. What if that promising alternative research doesn't work out - does that make CBT/GET any better? It's already a very complicated topic to cover in 45 mins, especially if they're planning to get comment from Sharpe and co rather than just do a debunking.

 

[Barry53]

Agreed, and nor the journalist that's done the leg work . It's all in the way the final programme is edited.
I know the journalist concerned. but the editorial control is key.

Presumably you are saying the editing process can exclude or mix truths so the end result might strongly infer something other than the truth, original contexts having been trampled over. Let's hope that does not happen here. At least we should have the original contexts available.

 

[Hilary]

@Barry53 - I like the idea of PACE and its proponents personified as a dung beetle. Although I do wonder if it's not a little insulting to dung beetles who may be creatures of great integrity??

Thank you @charles shepherd for all your hard work. I can't help feeling we should just wait and see, rather than expend limited energy trying to anticipate what is going to happen.

 

[charles shepherd]

@Barry53 - I like the idea of PACE and its proponents personified as a dung beetle. Although I do wonder if it's not a little insulting to dung beetles who may be creatures of great integrity??

Thank you @charles shepherd for all your hard work. I can't help feeling we should just wait and see, rather than expend limited energy trying to anticipate what is going to happen.

Yes, I don't think there is much more that can be usefully discussed, or information given at this stage

So let's just wait and see what (and who) is in the programme when it is transmitted

 

[Barry53]

Although I do wonder if it's not a little insulting to dung beetles who may be creatures of great integrity??

Exactly what I thought, but the name just felt applicable ... apologies to all dung beetles.

 

[TillyMoments]

Just spoken to Nicola Dowling, who is doing a program with Matthew Hill from BBC and mentioned Ron's interview, they are doing a 45 min program. Have also spoken about the abuse the children and their parents receive. I believe that they are doing much better research into ME; asking how it started with my son, how the GET impacted on him and how I was treated. Lets hope the stories come out together. I think this is for Radio Four program Dr Sheppard is in? They have talked to Tymes Trust amongst others.

The program will be aired on Tuesday 27th June at 8pm http://www.bbc.co.uk/programmes/b08vyly5

 

[MeSci]

The program will be aired on Tuesday 27th June at 8pm http://www.bbc.co.uk/programmes/b08vyly5

I've completely lost track of this thread, but there is a newish thread about the programme here: http://forums.phoenixrising.me/index.php?threads/radio-programme-on-children-with-me.52346/