Jim Wells, MLA in the Northern Ireland Assembly, speaks out in support of ME sufferers
It's hard for me to clearly understand him because of his accent.
What accent? You should try asking for directions around Bushmills!
It was a good speech and, while the NI Assembly may be limited in the extent they can deviate from UK policy, there does appear to be a willingness for change from those in a position to make changes happen.
So worth transcribing as a record to see if anything actually happens.
My clarifications and comments are in brackets.
Jim Wells MLA (representing South Down).
Ladies and gentlemen, as Horace said earlier, I took part in the first UTV (Ulster Television) Live piece on ME. I got the single biggest response I've ever had to any UTV interview I've ever done. My Twitter account, my e-mails, my Facebook were deluged with, young very good looking women I have to admit, who were stalking me demanding, chance would be a fine thing, action on this very important issue.
I have to be honest with you folks and say that, until I met a certain doctor that worked in the Royal (Royal Victoria Hospital, Belfast) I was in the field of the sceptics, I have to say that, absolutely honest with you. My view of ME was not in any way sound. Until I met a GP in the Royal called Alison.
Alison was at the top of her professional career. She was a workaholic. She was the leading light in the Ulster Rural Riders Association, very keen on the horses. And then one week, Alison's health fell of a cliff and she was diagnosed with ME. There was nothing wrong with her psychologically, she was still the same person that I'd known for many years. The only depression she had got was the depression she got when she was diagnosed with ME. No other reason. And her life simply fell to pieces. I'd seen the before and I've seen the after and I was absolutely convinced from that day on that ME is a physical medical condition. I accept that entirely (applause).
But there are many decision makers out there today who haven't had that direct experience that I've had. Fortunately for you folks, Edwin Poots (MLA, Minister of the Department of Health, Social Services and Public Safety), I know the lady that Edwin was referring to. Exactly the same. Works in his constituency office. An honest hard working person, no hang-ups, no psychological problems, but has terribly difficult problems with tiredness and getting out to work and getting out of bed. An absolutely genuine young lady. She's probably in her early 30's. So HE's convinced that this is a physical real illness.
But because we're faced with so many sceptics, and I had them, at DLA (Disabled Living Allowance) tribunals in every corner of South Down. You can almost predict how the tribunal's going to go when you see the GP on the panel. Because there are GPs that sit on those panels who believe that what we've heard tonight is rubbish, and let's be honest about it, that's what we're facing. And there are younger, and they tend to be younger GPs, who understand this condition much better and who give you a sympathetic and listening ear. And I've found it very difficult because I've said to constituents, it will not depend on the nature of your condition or how debilitating its been. It will depend on, who is that guy in the middle (of the) three of that tribunal. And if its x,y and z we can pack up and go home. Or, if its young x,y and z we've a very good chance.
So that's the difficulties we face. But clearly, the turnout tonight and the enthusiasm shown, and thank you to all of those, who no doubt tomorrow are going to suffer greatly as a result of having to stay here for three or four hours. I know its ahead of you, that all it is (meaning he understands that's how it is). Well done to those who stuck the course, some had to go and I understand that. But I think tonight, the turnout and the fact that UTV, watched by 190,000 people (its a small country) are here tonight and will be broadcasting and indicating that, its like Nuremburg rally here tonight its packed, we're probably well above our fire limit here I suspect. (little Ulster humour there).
But, you know, the fact that there were so many people here tonight showing so much determination, would indicate to me that the message will be getting through. I wish you all the best tomorrow. I am very worried about the lack of speaking rights to Dr Enlander. The alarm bells are ringing in my head and if I can try and do something about that very quickly I will because that's disgraceful, when you bring a world authority and you bring him across the Atlantic (massive applause) then you refuse to give him speaking rights, there's great suspicions in my head, there's something wrong here or maybe they don't want to hear the message that Dr Enlander has to give.
Finally, can I say I support Horace. We need a new unified voice for ME in this province. And I have to honest here, I'm going to say something very controversial, but I'm going to say it anyway, it has to be said. I took part in that UTV Live programme. The official, in inverted commas, voice, of ME in Northern Ireland, could not be traced to take part in that programme. The producer told me they tried and they tried to get somebody. And they had Horace and they had Mrs McG? but they could not find other individuals who should have been on that programme.
So maybe we need a new voice for ME in Northern Ireland a new official voice, and maybe this is the start of something dramatic and something very important and the fact that every corner of the province is represented here tonight indicates that you want to have that voice as well and you want to see this organisation (ME Alliance NI) going from strength to strength. I know many of the individuals and I'm confident they're going to do that and maybe we'll look back and we'll say this, it all happened on the Antrim Road in the Lansdowne Hotel, that this is the start of ME patients, ME sufferers going forward, asserting their rights and we can look back and see that's the day when it all started to go right for a change.
Thank you
(applause).
