The Members of the East Lothian ME Self Help group (ELMESH) would love to be able to take part in the Lifestyle Management course at the Thistle Foundation but can’t make the journey into Edinburgh. Could you help them raise funds to pay for a Thistle sponsored Lifestyle Management programme to be run locally? The course is free to participants but costs £4-5,000 to mount.
3 Edinburgh based authors will read from their work and share with the audience the story behind the story of their medically inspired books. Nasim Marie Jafry writes about the neuroimmune illness ME, through the eyes of the central character Helen. Nasim has had ME since the 1980ss and blends in her personal familiarity with the illness along with a healthy dose of fiction, in her best- selling novel, “The State of Me”.
Committee Room 3 at the Scottish Parliament was buzzing on the evening of the 12th March, as the various member organisations of the Neurological Alliance of Scotland came together for Brain Awareness Week.
The aim of the “We are the Missing Million” event was to raise awareness of the care and support needed by those living with a neurological condition and to draw attention to the problems in accessing welfare benefits, social care provision as well as NHS services. MSPs attending the evening were asked to sign a pledge to “Recognise the Missing Million”.
How did you feel when you heard the Cross Party Group (CPG) on M.E. had collapsed? Sad, dismayed, angered or wondered what the CPG was?
The CPG on M.E. started in 2000 with the support of many MSPs and enthusiasm to bring about change in the understanding of M.E. and for the lives of people affected by it. It ended in 2012 with a breakdown in the support of the remaining MSPs, following a disagreement amongst the 6 members of the working group for a Centre of Excellence / Lead Clinician, a controversial vote and the subsequent actions of a number of CPG members.
Are there any edmesh members who would be willing to feature as a “case study” at this year’s Parliamentary event being held by the Neurological Alliance of Scotland and titled “We are the Missing Million”?
This event will be held on Tuesday, 12th March 2013, between 6.00-7.30pm at the Scottish Parliament.
A big THANK YOU to everyone who returned a questionnaire to us. We’ve had 64 online and 20 postal surveys completed.
There were 23 online surveys started but not completed. To give those people an opportunity to finish them, the deadline has been extended to Friday 8th February 2013.
The new Lothian ME-CFS Service was launched in November 2012. It is based at the Pain Management service at Astley Ainslie Hospital, and is for adults with a diagnosis of M.E. or CFS who are well enough to attend the service.
3 Psychology Honours students from Edinburgh Napier University are looking for volunteers with ME-CFS to help them with their final year projects.
The deadline for contacting the students is 21st February as they have to be able to write up their results before the beginning of March.
Yoga teacher Karen has arranged an ME yoga classs for edmesh members, specifically designed for the needs of people with ME/CFS. Class details Date: Fridays from 12 October 2012 Time: 2-3pm Venue: The Crags Community Sports Centre, 10 Bowmont Place, Edinburgh, EH8 9RY What should I bring? Wear comfortable clothing you can move around in [...]
ME Research UK have announced a public meeting next month, organised jointly with Perth ME Support Group.
Speaker: Dr Vance A Spence, Chairman, ME Research UK
Topic: ME/CFS Research – 21st Century Issues and Challenges
Date: Tuesday 2 October 2012
