This transcript has been prepared by Suzy Chapman and is not an official BBC transcript. Although care has been taken to produce a fair and verbatim record, some errors and omissions may remain. This transcript may be reproduced in full or in part as long as the author and the source is credited and on condition that it is published with this disclaimer.
BBC Radio Norfolk
“Breakfast with Stephen Bumfry”
7am to 10am, Thursday 19 June 2008
[The first segment in this ME strand started at approximately 7.20am and continued to 7.29am.]
Stephen Bumfry: People with ME in Norfolk have been handed a life-line. Victims of the chronic fatigue syndrome have won a significant legal victory after a top judge declared it “in the public interest” for the High Court to rule on claims that treatments being offered on the NHS are potentially fatal.
Two people, including Kevin Short from Norwich, have fought for this move. Speaking to BBC Radio Norfolk, Mr Short’s lawyer, Jamie Beagent said “It is a huge step.”
Jamie Beagent: It’s great news for our clients and for the wider ME community – we are actually overwhelmed with messages of support and thanks that we’ve received since the hearing, so it is very good news. Nice actually fought, defended the claim vigorously and they’ll obviously be disappointed by the result because now we will have a proper review carried out by the High Court into the procedures that went into the production of the Guideline and that, as I say, with the potential that the Guideline will actually be quashed, when it finally does come to Court.
Stephen Bumfry: And Mr Beagent says while it’s some good news, there’s still some way to go until a full High Court hearing in the Autumn.
Jamie Beagent: Well, the Court will be looking at the process that brought about the publication of the Guideline in August, last year. The crux of our argument is that the evidence which NICE based their conclusions upon was skewed very heavily in favour of the psychiatric school and in particular, the randomised controlled tests which were relied upon, we consider were entirely inadequate – they were very small in number – I think only seven tests, trials carried out in relation to CBT and five in relation to Graded Exercise Therapy.
Stephen Bumfry: Now if you or someone in your family is affected by ME and you’d like to get in touch with me, here on “Breakfast with Bumfry”, pick up the phone now – 01603 617 321 or text 07786 200 951. Lynne, I know someone in your family’s been affected – we’ll hear what they’ll have to say very, very soon…”
Lynne McKinley (programme producer): Absolutely…
Stephen Bumfry: Dr Ian Gibson is Kevin Short’s local MP and he joins us on the line now. Dr Gibson, Good morning.
Ian Gibson: Good morning.
Stephen Bumfry: How did you first become involved with the campaign?
Ian Gibson: Well, I mean, Kevin and I first had a discussion about the whole business of ME, and he persuaded me that it was something worth taking up and the way I approached it was to call for an inquiry in the House of Commons, which I set up with members in both Houses and we produced a Gibson Inquiry report which, your know, went a long way, I think, to helping people see that there were some real problems in this issue – you speak at meetings about the Report and so on…
It’s a very combative field – there’s a lot of argument, a lot of dispute about what’s known and what’s not known, but certainly I think, we helped raise the profile of ME as a serious illness, which seriously afflicts people and has to be taken, you know, right up into the echelons of a new illness which hasn’t been addressed properly by the medical profession…
Stephen Bumfry: Well, just describe to me what ME means and what the symptoms are…
Ian Gibson: Well, I have met constituents who have very depressed days when they can’t move, when they can’t get out of the house, and so on…For some people it’s very, very serious, that goes on for quite a long time – it might go on for their whole lives. Other people recover and can go out of doors, can maybe even stagger to work but it’s certainly not something that is manageable without proper treatment.
Stephen Bumfry: Now, I know that this condition has been dubbed “Yuppie Flu” – which is very unfortunate…
Ian Gibson: Yes. That was the meaning, I think. I think that was the attempt to say “Oh, dear, they’re just making it all up – it’s artificial.” Completely, completely untrue. There’s I think 250,000 people in this country who have symptoms of ME, different gradations of it, as I pointed out.
Quite often GPs miss it, don’t recognise it, don’t see it, just think it’s a temporary thing – just go home, have a couple of days in bed and you’ll be alright, again. Now that’s not their fault – it’s just that it’s never been taken seriously by the medical profession – whereas it has been in other parts of the world – the World Health Organisation has recognised that it is a neurological disease, that there may be factors like viruses, and other agents present – that it’s more biomedical than psychiatric and that has not been the prevailing thinking of the people in the medical professional.
So now…now this decision really helps us move that on and to say look NICE have made a decision based very, very much on the psychiatric analysis and there is plenty of evidence…massive amount of evidence now to suggest that it’s more complicated than that…
Stephen Bumfry: So your campaign has a got a bit of momentum, now, then?
Ian Gibson: Oh, yes. It’s got a momentum…we will support…there are many different groups in this field who argue about the different causes of it in terms of which agents might be involved…the problems with children and particularly with adults. It’s very combative, everybody has little arguments about it…what it really does need is a huge investment into research to find out what the cause is and we have been pleading for that for some time.
We have got the scientists and medics who are interested in this field together…they’re be putting together an application in conjunction with people in Canada and other countries who are interested in this, who’ve done some research but certainly need a huge injection of resource to get this settled once and for all.
NICE’s decision is what’s being challenged. Without all that evidence, it’s pretty poor, I think, to come out with the decision that they have and I’m very grateful that Kevin and a friend of his have challenged the ruling by NICE. In fact, I’m seeing, in an hour’s time, the Chairman of NICE, Sir Michael Rawlings, who’s a friend of mine, and we’ve had lots of arguments about drug availability for cancers and other things where NICE has been involved to make the assessment of the evidence and I shall talk to him about ME and say “Come on, don’t you really think we need to have a proper study carried out on this now, before you make decisions…”
Stephen Bumfry: We’ve got Lynne McKinley producing the show in the studio, Dr Gibson, and a member of Lynne’s family is affected by ME – Lynne…
Lynne McKinley: Absolutely. I know my nephew Rob has had ME for sixteen years. Actually, I did actually send him a copy of the High Court ruling ‘cos I thought he might be interested in seeing this and he said – well, this is what he emailed back to me:
“The bottom line is that until more biomedical research is carried out to understand the condition the arguments will continue to rage.”
He said, “It’s depressing to acknowledge just how little progress has been made in the sixteen years since I’ve been unwell. Two weeks ago, I went up to South London to give blood for Dr Jonathon Kerr’s research project…”
Ian Gibson: Excellent work, excellent biomedical work…
Lynne McKinley: “…abnormal gene expression in ME patients. I’m sure it’s through scientists like him that the real breakthroughs will be made.”
And so obviously, my nephew is very much a fan of Dr Kerr. But I can almost feel his frustration – sixteen years with ME…
Ian Gibson: Oh, absolutely…I can replicate that story many times over – it’s an absolute disgrace and appalling that it has been unacknowledged as a serious, serious condition which the medical profession really should have taken up. It’s up to government now to take a serious look at the whole situation and inject some money into it. The fight back starts here, again, for the hundredth time…we keep pushing at it and just now and again, this just shows you, if you give up, you know you’ll get nothing, you’ve gotta keep pushing and suddenly there’s a break somewhere.
Stephen Bumfry: Lynne, just briefly, then…
Lynne McKinley: The other thing that Rob just mentions in his email, he says some of the charities like ME Research UK and CFS Research Foundation, they’re raising money for biomedical research, just, you know, worth a mention, and I guess, you know, anybody that has a member of the family that has ME will understand the importance of supporting…
Ian Gibson: Fair comments…fair comments..
Stephen Bumfry: Dr Ian Gibson, MP for Norwich North, thank you very much for joining us this morning…
Ian Gibson: Thank you very much.
Stephen Bumfry: And if its affected you or someone in your family in any way, shape or form – 01603 617 321 or you can text me and that’s 07786 200 951, give us a shout here on “Breakfast with Bumfry”.