SUFFERERS of ME claim they have been left “high and dry” after a York course which helped them manage their condition was scrapped.
Sarah Baldock, 20, from Fulford, and Helen Laurence, 30, from near Huntington, said they had both made big progress in coping with their debilitating illness since they went on the ME management course last year.
Sarah, who had to go in a wheelchair to her local polling station to vote in the General Election last year, was able to walk there for last week’s council elections, and she can also get into York on the bus and walk short distances around the city centre.
The friends said the fortnightly management sessions, organised by a physiotherapist based at Bootham Park Hospital, gave them and half a dozen other sufferers advice and a host of practical tips on how to cope better with ME, also known as chronic fatigue syndrome.
“We were told it wasn’t going to cure us, but would help us manage our symptoms,” said Sarah. “We learned how to manage our day, ensuring we got rest when we needed it, and learned how to relax properly. It also helped us with practical things such as how to get bus passes.”
Helen said that when the 18-week course finished last autumn, they were told that if they had a relapse or needed any advice in future they could ring up, and even take part in a further course.
But Sarah and Helen said that another woman, who had also been on the course, had told them that when she suffered a relapse recently and tried to call for advice, she was told the course had been stopped.
“We feel we’ve been left high and dry,” said Sarah. “We’re being denied the support and treatment we need.”
She said the course had been running for ten years and the local primary care trust was allowing it to be closed.
An NHS North Yorkshire and York spokesman said it had always commissioned chronic fatigue syndrome (CFS) services from a specialist regional service based in Leeds – a recognised centre of excellence staffed by a fully qualified multi-disciplinary team – and had never formally commissioned a CFS service in York.
He said the management course at Bootham Park Hospital was run by a member of staff with an interest in chronic fatigue syndrome, who had decided to set it up.
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