Monday, 1 August 2011

A good bit from the radio

There was a lot of fuss about M.E. on Friday. There was an awful interview on Radio4, which was then repeated on Radio 5 Live. It seems that 5 Live did another bit later on though.

And because I know that link probably won't be live forever, I have transposed the interview below. Interjections from the interview are marked with '>'.

I was 12 and a half when I was first diagnosed. Prior to that I was fit and healthy and happy and I believe psychologically stable; cycled to school, school rugby, academically doing reasonably well, and since then I suffer from severe headaches, severe muscle pain, severe exhaustion, brought on by physical activity or mental activity which is reading, using computers and so on. It is incredibly debilitating. I have to use an electric scooter and stair lift. I have a carer from social services to assist me with personal care. So life is incredibly difficult and I am in no doubt that it's a physical illness. I know some people have done things like CBT and so on, and have improved, but I think as Dr Shepherd pointed out earlier on, ME has become an umbrella term for a lot of illness and I think a lot of people with ME would argue that if you do CBT and get better completely perhaps you didn't have ME to start with.

> CBT being cognitive behaviour therapy.

That's it yes.

> What was the trigger for you?

It was a virus called, don't laugh, Coxsackie B4

> Wow

They recon that half the town of Aberystwyth had the virus. They tested a lot of children in my comprehensive school, a lot of them had it. And for reasons they're still not sure of, a large per centage of people in Aberystwyth came down with ME at that time.

> Do you think there is an imbalance of funding for research into this disease, condition, however you might describe it?

Er disease, yeah we'll go with that. Yeah, it would appear so. I think one of the things that is confusing, for example, at the moment in the US and the UK, people with ME are not allowed to give blood. Now, obviously, someone with a psychiatric condition would not pose any threat to the population  by giving blood. So if people with ME are not allowed to give blood, then obviously the medical authorities are very concerned that ME does have a  physical and therefore contagious element to it, so surely the bulk of the research should be going into finding out what the physical causes of ME are.

> Finally, we had a text earlier from someone saying 'ME, it's just an excuse for lazy people to take a couple of years off work'

Yeah, you do get people like that. I'm afraid ME is a serious and debilitating illness. I would love to live life to the full, I would love to be working, climbing mountains and doing all sorts. I get very very frustrated, and life is extremely painful and extremely difficult and I wish it was very different. But for a lot of people with ME that is the reality of life. Acceptance from the medical profession, which we get from a vast number of doctors, is valued, and the thing that we want is for people to help and funding to be given to try and find some way of assisting us practically.

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