An ME sufferer says the time for talking is over and has called for action and leadership to create specialist ME services in the island.

Port St Mary resident Craig Morris said that fellow sufferers had reacted with ’frustration’ and ’anger’ to comments made in the House of Keys last week.

’A service built to our model and recruited in-house (as far as possible) is exactly what I thought had been agreed,’ said Mr Morris, who developed the debilitating disease nine years ago and has been campaigning for dedicated support for several years.

A recent petition with more than 1,500 signatures drawn up by charity ME Support Isle of Man called for a Tynwald select committee to investigate the service.

It prompted Health Minister David Ashford to announce £170,000 was pledged to support ME patients.

But he said that subsequent comments in the House of Keys have worried sufferers.

’I’m concerned that the Minister’s current form of words is a way of just kicking the can down the road,’ Mr Morris said.

’People with ME need help now, not to be told they don’t matter enough to get a service they’ve deserved for decades.

’If I was well enough to protest publicly I would be doing so but as with so many people with ME just keeping going is a full time job.’

Mr Ashford said the department was also looking at a broader service that would include those with fibromyalgia, connective tissue disorders, inflammatory bowel disease and autoimmune conditions, who could benefit from similar forms of treatment.

Mr Morris said: ’I don’t doubt that Minister Ashford is genuine but his words do make me fearful we may not get an ME service fit for purpose.

’It appears he’s now saying he doesn’t want an ME service but to widen out the service to cover even more complex needs.’ He said it was ’crucial’ that the ME service commissioned in the island does not include Graded Exercise Therapy (GET)/Cognitive Behavioural Therapy (CBT) as a treatment.

’CBT can be useful for helping people cope with serious illness but as it’s currently delivered here its rationale is to persuade people with ME that they don’t have ME just mistaken illness beliefs,’ he said.

’It’s no longer okay to write off ME patients as hysterical.

’It’s time for the government to take ME seriously.’

Mr Morris, aged 40, added: ’People are desperate for help and to mix this up with other conditions. People need help and they are not getting it.

’Why was there not an occupational therapist in 2016? People with ME are being harmed and neglected. It’s very frustrating.

’They’re saying the problem is they can’t recruit, I can already tell you their names.

’They say there are more pandas in Scotland than ME nurses. We have not got one.

’The money is there, why is it not commissioned? This is 30 years of neglect of shameful, harmful, medieval treatment of people with ME.’

Mr Morris, aged 40, was on a weekend trip to London in 2010 when he was struck down by glandular fever.

He had just landed his ’dream job’ as head of English at King William’s College.

He had to stop working and his marriage foundered.

Frustrating

He now lives on benefits and is cared for by his parents; he said the financial impact has been ’crippling’.

Mr Morris said he found the current situation for island sufferers ’very frustrating’.

’I keep talking to politicians,’ he said. ’I have met some wonderful people in the health service in the island, I want to be speaking to them.

’I’ve had enough of being fobbed off and want an ME service for the 350 people here with ME.’

He added: ’Talking is only hot air; we need action and leadership.

’We need ordinary people to stand with us and say it’s not good enough.’

He called upon residents to sign the petition: ’We need 199 more signatures to make 2,000 people saying it’s time for an ME service.

â?¢ See the petition at http://chng.it/nggDYJjYRZ).