John Darvall (BBC radio) wants us to tell him how he can help us!

Sasha

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John Darvall is the lovely, lovely BBC radio presenter who ran a whole morning's programme featuring ME, with Naomi Whittingham and her fantastic fundraising brother Tom.

Although his programme is local radio - BBC Bristol, in fact - Bristol is one of the biggest UK cities, with 400,000 people and no doubt a bigger area within BBC Bristol's catchment. And in Bristol there are two universities, two major hospitals, loads of businesses, loads of wealthy people - a great target for advocacy and fundraising.

He's so sympathetic and so moved by what he's discovered about this illness that he's going to do everything he can to help us and wants to do more. He already has some plans and he wants more suggestions. On his latest blog (click here and give him the traffic - show him that we repay his interest!), he says:

John Darvall said:
As a journalist, having talked, seen and listened to those with ME, I will do more to learn, educate and explore what can be done. In the coming weeks on the BBC radio programme I am privileged to do you will hear from those raising money to help diagnose, treat and maybe even cure ME. You will also hear from more from those who live with ME and from experts in pain management, where I hope they will take calls from anyone listening. I will let you know when all this is happening.

If there is something, anything else you feel I can do then post it on here. All ideas and insights will be considered by me and my very small but brilliant programme production team.

Thank you for sharing your stories and I will try to do what I can to raise the profile, expose and tell the story of ME with your help and support.
Let's take him up on that. This guy is totally on our side and wants to help us. I think he's great.
 

ukxmrv

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I'm not sure of he is on "our side" or if he knows where "our side" is after all.

The first program was great but I could only stomach so much of the 2nd one. The reason was the inclusion of a Physio or OT from one of the Fatigue clinics who spoke pure psycho babble. The people he had there at the time (AFME and a newly diagnosed patient) were both portrayed as agreeing with her viewpoint.

Is this where he is heading and will AFME be the ones guiding him there?

Who are these experts in pain management?

I know that it is up to us to tell him that AFME doesn't speak on behalf of all patients, that they support the UK Fatigue clinics and they supported both the NICE guidelines and the PACE trial.

We can't expect him to use his shows to tell the right story unless we take the time to tell him what that story is. AFME is based in Bristol and for all I know any future publicity may be for their benefit and not necessarily the things that patients who don't support them want to see.

He's not going to know any differently unless we tell him (nicely of course).
 
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Sasha

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I only heard a few snippets of the second programme but it seems clear that he's on the side of patients and wants to help.

He wrote this on his blog:

John Darvall said:
M E is dreadful, debilitating illness that when it takes hold it never lets go. For Naomi, for all those living with chronic pain and M E, I will do more while I can.
...which doesn't sound psych-oriented but yes, we need to make sure that he's getting the right information. Our other charities ought to be approaching him - @charles shepherd :) - and we ought to be pushing for biomedical research to be featured and for the biomedical research charities (IiME, MERUK, and the MEA with its Ramsay Research Fund) to be having input.

He's clearly very well disposed to us but we can't expect him to find his way through this maze on his own - and that's not his fault.
 

eafw

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I listened to both Radio Bristol programmes online and thought they were well done. He's clearly been affected by this.

If he wants to do something to help then one of things that would be useful is some stories about how badly people with ME are dealt with within the UK.

I don't just mean the lack of medical treatment for the condition itself, but the long-standing and concerted media propoganda against us, the lies told, the funneling of funds into pysch research, the refusal to release the PACE data, the insitence that PACE is the be all and end all for practitioners in the UK, the old boy networks, the way a "CFS" diagnosis will blight any other medical treatments we need.

This is more than a one man job, obviously, so I would ask that he talks to his contacts and colleagues in the media and points out that there are stories to be told - this is what journalists are supposed to do - and gets them interested in doing articles or radio shows that look at uncovering the shameful way the establishment have been treating us, and how it impacts on so many lives.

Because everytime something like the Suzanne (forgot her name) book comes out and there's another round of "All in the MInd", what do we have ? A letter from the MEA (that never got published) and people on Amazon calling us a "lynch mob" for daring to say a peep out of place with their world view. And on it goes.

We need an "ME media group" that can push out a counter to that, even before it begins - not just the repetitive firefighting we keep getting stuck with - and if this guy is serious about shifting the perception of ME in the country, then potentially if he can start rounding up a few contacts who can do some digging for us then he is in a position to make some contribution to that.
 
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eafw

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Do people think it would be useful to start a discussion in the members only area then invite him over for Q&A and some brainstorming ? Mods ? (preferable to conducting it all in public on his blog maybe)
 

Effi

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Do people think it would be useful to start a discussion in the members only area then invite him over for Q&A and some brainstorming ?
I think for an 'outsider' it is very difficult to immediately grasp the ME situation (lack of treatment, history, politics, the psych myth, like @eafw said in post #8). The wrong people are always so quick to lend their 'help', spreading the wrong info over and over again. So I think it would be a great idea to invite him over for a Q&A. Someone in his position in the media is what we need to get the right info out, so I'd say strike the iron while it's hot!
 

Sasha

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I think we need to be careful about putting him in an awkward position or frightening him off. He's a public figure representing a national media organisation (and the BBC is in a very special position in the UK) and I'm not sure that in his position it would be OK for him to come here (contractually), or, even if it was, that he'd feel comfortable doing it.

The issue of which charities are OK (for example) is a real red-button topic here on the forum and that kind of discussion can get very ugly very quickly.

I'm inclined to think that it might be better to comment on his blog (or to email his show) with these concerns, but that's just my opinion.

We have charities that can talk to him (@charles shepherd, with your new report about CBT/GET!). I'd like to see them contacting him.
 

eafw

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I'm not sure that in his position it would be OK for him to come here (contractually), or, even if it was, that he'd feel comfortable doing it.
Can't think what the contractual issues would be. No different coming here as a guest to ask questions of us than going to interview anyone else in the course of research for a story or his work. We can but ask.
 

Sasha

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Can't think what the contractual issues would be. No different coming here as a guest to ask questions of us than going to interview anyone else in the course of research for a story or his work. We can but ask.
I think the difference would be that it would all be in writing, a matter of permanent record, and public. Whether that's a contractual issue or just one that might make a journalist uncomfortable, I don't know.

For me as a forum member, it's the prospect of any conversation about UK charities heading rapidly south that concerns me. In the past, that kind of conversation has led to threads getting locked.
 

Effi

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I think we need to be careful about putting him in an awkward position or frightening him off. He's a public figure representing a national media organisation (and the BBC is in a very special position in the UK) and I'm not sure that in his position it would be OK for him to come here (contractually), or, even if it was, that he'd feel comfortable doing it.
I think I understand what you're saying, @Sasha ... I'm not up to date on the specifics of UK media. I can imagine a scenario where a Q&A here on the forum could be offputting in a way. Then again it is SO important to finally muzzle the psychobabblers. They are so very keen on yapping their way through to public opinion and it still seems to be the only voice the general public gets to hear when it comes to ME. I'm all for being diplomatic, but I'm not sure if that's gonna cut it with that bunch. They are fierce! But so are we! :ninja::fire:
 

Sushi

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Do people think it would be useful to start a discussion in the members only area then invite him over for Q&A and some brainstorming ? Mods ? (preferable to conducting it all in public on his blog maybe)
Perhaps he will join and read here. Does he know about Phoenix Rising as a resource?
 

Scarecrow

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Do people think it would be useful to start a discussion in the members only area then invite him over for Q&A and some brainstorming ? Mods ? (preferable to conducting it all in public on his blog maybe)
But he has invited people to put suggestions on his blog. Who are we to set the agenda? That said, there's certainly no harm in letting him know about PR.
 

eafw

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For me as a forum member, it's the prospect of any conversation about UK charities heading rapidly south that concerns me. In the past, that kind of conversation has led to threads getting locked.
But it doesn't have to be a free-for-all. Any discussion would have to be set up with a clear purpose, mostly for him to ask us Qs and/or to respond to the viability of some of the suggestions that he is asking us to put forward.

Saying that, if organisations purport to represent us and don't (eg are wedded to PACE) then that is information that should be made clear to anyone looking into all this.
 

Scarecrow

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We are the people he is asking for suggestions from. Of course we should be setting the agenda. No-one is being stopped from posting on his blog, but it is another source of info for him here
But why the need to conduct it in a private forum?