From BBC News website, 28 June 2010
Andy Micklethwaite, 58, from Derbyshire, has been on incapacity benefit for about three years, but started suffering with ME in 1984.
He had worked for about 10 years in sales support for a firms supplying computer systems before being made redundant.
After that he said he had tried various jobs as his symptoms got worse – including setting up his own business, teaching people introductory computer courses at a local college and invigilating exams before the ME meant he had to stop working.
He summed up ME as “fatigue, fatigue, fatigue”: “It really is debilitating.”
He said the problem with ME is there is so much uncertainty about the illness – while it has been classed as a mental condition, he believes medical research has overlooked the physical side of the illness.
“If you can imagine that your brain is like treacle and you can't think things through – then that's what it's like on a good day. It's mental fatigue and physical strain – I run out of breath trying to climb the stairs at the moment.”
“There is no diagnostic test on it. With ME it's a raft of things – we don't know if it's one condition or several.
“The other thing is, if you look at me, I look fit and well because I sit outside in the, perhaps mistaken, belief that a bit of fresh air will do me good.”
Mr Micklethwaite is concerned about the emphasis on cutting incapacity benefit: “Why is this the subject of cuts? Why aren't we cutting the number of MPs, the number of MEPs?… The government isn't bearing any of the pain, is it?”
“Work capability assessments” had already begun under the previous Labour government and were criticised in a report by the Citizen's Advice Bureau in March.
It said seriously ill people were being pushed into seeking work – including people with advanced stages of Parkinson's Disease and Multiple Sclerosis or awaiting heart surgery.
“If people with open heart surgery, or MS, or Parkinsons are being deemed fit to work, something is not right,” said Mr Micklethwaite.
“Quite frankly this whole thing smacks of ‘we have got this large bill with incapacity benefit – let's cut it'.”
“I'm not convinced that the tests on whether you are fit to work are fair. For a start I would like to see some transparency – I would like to see what the terms are of the people who are taking these tests.
“Is there any truth in the rumour they are paid on the number of people sent off to work? If you interview somebody, can you tell how fit they are?”
“I'm worried,” he said.
“Who is going to want to employ someone with unreliable health?
“All this hyperbole coming out from the government seems to be missing the fact that there aren't any jobs out there and there are lots of fit people able to take them up.”
“I would love to be able to be in work. I would love to be able to live – it's a struggle.”