Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Myalgia Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex neurological, disorder affecting many parts of the body and resulting in profound disability for the 25% of patients who are severely affected.

Groups supporting people suffering from ME/CFS and their carers approached the LINk for help to get their voices heard.

LINk’s aim was to ensure that the services met people’s needs by giving them access to specialist advice and also support in presenting their views to the Health Overview and Scrutiny Committee (HOSC).

With the support of the host team this group of dedicated LINk members and ME/CFS service users have successfully influenced service, provision and commissioning achieving a consultant tier service.

Crucially, patient representatives have told us that this is the first time in three years that they feel they have been listened to.

Useful websites: www.norfolkandsuffolk.me.uk

 

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