ME sufferers are asked to speak up.....

Reading Chronicle Thursday 3rd April 2008

Thousands of people with Chronic Fatigue Syndrome (ME) will be asked for their views on the care and services they receive.

As part of a needs assessment by Berkshires' Primary Care Trust (PCT's), ME patients are being asked to fill in a questionnaire, about where they receive information and services, whether they have tried any therapies, and what helps them feel better.

Eileen Shoosmith, from the Reading Area ME Support Group said 'In recent months, we have found health service staff responsive to the idea of setting up a much needed specialist service for ME sufferers, but they first need to access, just what will be involved and find out if they can find the money for it.

'Many GP's who care for ME sufferers, or the similar disease Fibromyalgia (FM), feel at a loss,as to how to provide ongoing care at their surgeries.

Lots of patients with these illnesses feel abandoned by the health service, and many are so ill, they often can't summon up the strength, to get out of the house, to see their doctors, for even basic help to improve their worst symptoms'.

Communications between patient groups, and PCT's have been going on since 2002, with meetings since 2006.

The Reading Area ME Support Group,which stretches across East Berkshire, is now working with West Berkshire ME and FM group, as well as Reading and Wokingham FM support groups.

An estimated total of 40,000 people in Berkshire suffer from ME and FM, although there is no specialist treatment for either condition in the area.

People with ME or FM, can download a needs assessment questionnaire by clicking here or contact Eileen Shoosmith on 01189 786480.

The questionnaire, should be completed and returned by 18th April 2008.