'Believe in ME' report published by NHS Lothian as part of commitment to improve services for patients with ME

 The report, Believe in ME, highlights the results of a survey gauging the views and experiences of 168 people across Edinburgh and the Lothians, most of whom have been diagnosed with ME - also referred to as Chronic Fatigue Syndrome (CFS), or Post Viral Fatigue Syndrome (PVFS).


The survey was carried out as part of NHS Lothian's commitment to working closer with patients to develop services and to improve information available to health professionals to support patients with ME/CFS. It was also conducted in response to concerns raised by ME patients about the services they receive.

The survey was distributed widely across NHS Lothian and to ME self-help groups and was made available electronically by edmesh - the Edinburgh ME self-help group - through its website. ME patients' experiences and perceptions highlighted in Believe in ME include:

  • not being listened to or understood
  • delays in diagnosis
  • lack of support in managing symptoms
  • problems in finding information about ME
  • scepticism about ME from health professionals and wider society.

Jackie Sansbury, NHS Lothian's Director of Strategic Planning and Modernisation, said:

"The survey results published in Believe in ME have helped identify what patients with ME/CFS in Lothian need in terms of better support. The patients' views will be incorporated into a review of ME services, which we are currently undertaking."

Paul Currie, a Strategic Programme Manager with NHS Lothian, said:

 "The Believe in ME survey findings will not only help us in our review of ME services, but also help raise awareness and understanding of the condition. We are grateful to edmesh for their help in promoting and distributing the survey."

Liz Blackadder, an edmesh committee member, said:

 "edmesh group is very happy to see the publication of the Believe in ME report for Lothian and hopes that it has a wide circulation and that all its recommendations will be implemented. It will be critical that the patients' viewpoints and experiences are central to service developments and edmesh is keen that the voices of people with ME are not lost."

NHS Lothian welcomes the launch on 14 May of two healthcare initiatives for people with ME: - a Scottish Good Practice Statement for GPs on the diagnosis and management of ME/CFS and a national consultation on a needs assessment of healthcare services for people living with the illness. Both initiatives were launched in the Scottish Parliament and are supported by the Scottish Government Health Directorates.

Paul Currie said:

 "With the publication of Believe in ME and our ongoing commitment to improve health services for people diagnosed with ME/CFS, this is a timely launch of these two initiatives."

Liz Blackadder said:

"edmesh sees the launch of the two national initiatives during ME Awareness Week as a very important milestone in the development of services for people with ME in Scotland and the recognition of ME as a serious long-term condition for many people."