The Scottish Parliament will be the venue for an awareness event for Myalgic Encephalomyeltis (ME) on Wednesday, May 15.
Merryn Fergusson, whose book What is Wrong with ME? gives a candid mother’s eye view of teenage ME, will be the keynote speaker.
The book is based on the diary that she kept throughout the three-year period during which her then teenage son Chris was seriously ill and largely house and bedbound by this debilitating condition.
A practising physiotherapist who lives in Galloway, Merryn is married to Alex Fergusson, MSP for Galloway and West Dumfries.
You and ME Together is an event for MSPs and invited guests, organised by the Scottish ME-CFS Collaborative, a partnership of third sector organisations including the charities Action for ME and the ME Association, patient support groups and local charities, such as edmesh (Edinburgh ME Self Help group), expert health professionals, patients and carers.
It will be hosted by Mary Fee, MSP for West Scotland and previously Chair of the Cross Party Group on M.E and takes place during ME Awareness Week which runs from May 12 to 18 May.
You and ME Together will focus on current projects and explore how patients, carers and advocates can work collaboratively with service providers, policy and decision makers, to develop effective support for the 20,000 people in Scotland living with M.E.-CFS.
Mary Fee MSP will give an opening speech, welcoming people to the event, and other speakers include: Sonya Chowdhury, Chief Executive of Action for ME and Joan Kerr of edmesh.
Sonya said: “I would like to thank Mary Fee for enabling us to hold this event at the Scottish Parliament, where it will enable MSPs and other key decision makers to hear about the exciting progress being made in research into M.E. and plans that members of the Scottish ME-CFS Collaborative have to increase understanding of the illness among health professionals.
“The aim of the collaborative is to bring resources and expertise together to focus on individual projects which have a clear and achievable positive impact on the lives of people affected by M.E.-CFS in Scotland.
“We plan to run health and social care education/professional development initiatives which, if they prove successful, we will seek to attract further funding to roll them out across Scotland.”
Ewan Dale of the ME Association said: “The need to promote understanding and develop treatment for ME-CFS remains urgent.
“We know how progress can be achieved, but we need medics and researchers to get on board and help us achieve these goals, and MSPs to encourage adoption of the best approaches for accumulating progress in cost-effective health service resourcing.”
The Convenor for edmesh, Anne Friston said: “We are pleased to be a partner in this forward looking initiative.
“It’s a great opportunity, for us, as patients and carers to work constructively with the people who can influence and shape the face of ME-CFS in Scotland.
“Many medical, social care and allied health professionals are working without a basic understanding of this illness and we hope that speaking about the reality of what it’s like to live with this devastating condition will help them to develop a more informed way of working which we believe can only be a positive step forward.”