Closure of specialist service for people with ME/CFS – local group feels ‘betrayed’ | Isle of Man Courier | 30 May 2015

May 30, 2015

A specialist physiotherapist service has been withdrawn for people who suffer from Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome.

The service, based at the Community Health Clinic on Westmoreland Road, Douglas, ended on May 1 when a member of staff went on long-term leave.

Celia Marshall, chairman of M.E. Support (IOM), said: ‘We have been working with the government team to try to improve the service. The team has not met for two months. Never in my worst nightmare did I think that simply because we had not met, they would simply close the service. I feel totally betrayed!’

But the Department of Health and Social Care told the Courier it was committed to exploring how services for people with ME could be developed.

A spokesman said: ‘In recent months the department has worked closely with ME Support (IOM), forming a steering group for ME care on the island which includes lay representation. In addition the island now has its first ever GP champion for ME.

‘The department offers both physiotherapy and occupational therapy to people with ME/CFS, as needed, to help them to manage their symptoms and provide practical support.

‘The island has a specialist physiotherapist who sees a number of ME/CFS patients. However this person is now on a period of leave. Despite the department’s best efforts, it has not been possible to find an individual to cover this specialist role. However physiotherapy is still available to those with CFS/ME. The therapies manager is arranging to meet with ME Support (IOM) to outline plans for the service.’

He added that as well as specialist physiotherapy the department also provided specialist occupational therapy. These are two separate medical disciplines and as such an occupational therapist would not be qualified to provide cover for a physiotherapist.

The spokesman added: ‘The department always endeavours to provide the best possible services to the people of the Isle of Man. However the provision of increasingly specialised services continues to pose long term challenges in a small island-based community, as is the case here.’

ME/CFS sufferes can be mildly affected, whereby they can still work part time, moderately affected, or seriously affected, and may be housebound or bedbound for months, years or decades.

ME/CFS involves significant abnormalities in key parts of the brain, the immune system, the hormone producing system, and the mitochondria (energy producing parts of cells).

It can produce a wide range of up to 50 varying symptoms including overwhelming fatigue, chronic pain and headache, poor memory and ‘brain fog’, sleep disturbance, hypersensitivity to sound and light etc, nausea and IBS, poor immune system etc.

The M.E. Support (IOM) is a self help group providing support and information for members. It holds monthly meetings giving members the chance to meet and chat over a coffee.

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