Bury patients help with research into difficult-to-spot disease | Prestwich and Whitefield Guide | 5 July 2013

July 6, 2013

From the Prestwich and Whitefield Guide, 5 July 2013. Story by David Thomson.

PATIENTS from Bury have been helping University of Manchester researchers to develop new resources for those with ME/CFS.

Chronic Fatigue Syndrome (CFS), also known as ME (myalgic encephalomyelitis), affects about 250,000 people in the UK, including children.

But because it is clinically difficult to spot, patients may have symptoms for many years but remain undiagnosed.

Members of the Bolton/Bury ME/CFS Support Group have been taking part in the research project.

Ex-chairman Pam Turner and former carers representative Yvonne Leech from Bury have been involved in the ME Education, Training and Resources in Primary Care (METRIC) study since March, 2011 METRIC is funded by the National Institute for Health Research, and aims to develop resources for patients with CFS/ME to be used in primary care and to provide an educational package for GPs and practice nurses to learn more about the diagnosis and management of CFS/ME.

Since the study started, groups of patients and carers from the support group have met with researchers every few months to guide the development of the patient and educational resources and to make them more patient-centred.

These resources include a DVD and factsheets on managing all the major symptoms of CFS/ME. They are currently being evaluated by about 20 GP practices across the North West.

The research team is collecting data from about 50 patients who have been using them over the past six months, and will be interviewing people about their experiences with plans to make them more widely available in the future.

As there are no GP practices taking part in Bury, researchers would like feedback from the local CFS/ME community and are holding a focus group for 12 to 15 people to receive a copy of these resources and give feedback about them to the research team.

The meeting will be held in Bury town centre next Thursday at 2pm and will be open to patients and their carers.

To book a place and for more information about the study: contact Dr Lisa Riste, principal investigator, or Kerin Bayliss, research associate, on lisa.riste@manchester.ac.uk or kerin.bayliss@manchester.ac.uk or by calling 0161 2757624.

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