#MEAction Scotland’s parliamentary work is focused around our petition, submitted to the Scottish Government Public Petitions Committee in May 2018, and the actions that have arisen as a result of the petition process.
#MEAction Scotland’s parliamentary lobbying activities focus on three main areas:
Meet your MSP Toolkit
Members of the Scottish Parliament (MSPs) have the power to make change for people with ME in Scotland. #MEAction Scotland has developed this guide to help you feel confident to contact and meet your MSP.
Have you contacted your MsP?
History of Scottish Parliament Team
Working with MSPs and civil servants we are making progress towards achieving some of our petition’s aims. Politicians are taking note, but there is still a long way to go.
#MillionsMissing Outside Scottish Parliament
The first #MillionsMissing in Scotland took place outside the Scottish Parliament. We raised MSPs’ awareness of the ME community and demanded more support for patients across Scotland.
Unrest Shown In Parliament
#MEAction Scotland’s Time for Unrest event at the Scottish Parliament on 30 January 2018 provided information for MSPs and called on them to show their support for people with ME. Attended by over 70 people, it attracted an unprecedented number of MSPs and was described as “one of the most popular events I have seen” by the event manager at the Scottish Parliament.
Official Launch of #MEAction Scotland
Kim Gurav, Emma Shorter and Janet Sylvester officially launched #MEAction Scotland as an affiliate of #MEAction UK. #MEAction Scotland launched with three key aims: to be part of building a stronger ME advocacy community in Scotland; to raise awareness of the devastating impact of ME; and to lobby for effective support for people with ME.
Scottish Government Announces First Research Funding For A Decade
The Scottish Government announced the first research funding for ME for a decade. It invested £45,000 over three years as part funding, alongside Action for ME, for a PhD student. The funding was awarded in June to Professor Chris Ponting from Edinburgh University.
NHS Education Scotland Agrees To Develop ME Training Module For GPs
NHS Education for Scotland is the NHS board responsible for training and development of healthcare professionals in Scotland. Following a series of meetings with #MEAction Scotland volunteers and Action for ME, NHS Education for Scotland added a module on ME/CFS to the modules planned for production in 2019-2020. The module was subsequently delayed until the NICE guideline review is completed.
Scottish Health Council Launches Consultations With People With ME
Following discussions with #MEAction Scotland and ME charities, the Scottish Health Council launched consultations and a survey to find out what good care looks like for people with ME.
Scottish Government Reviews 2011 Needs Assessment For ME
The Scottish Public Health Network set up a steering group, including #MEAction Scotland volunteers, to review the 2011 Health Care Needs Assessment.
Chief Scientist Office Funding To Identify ME Research Priorities
The Scottish Chief Scientist Office was one of three funders of a new project to identify the top ten research priorities for ME. The Priority Setting Partnership is led by people with ME,carers and clinicians facilitated by the James Lind Alliance.
Scottish Government Reviews Graded Exercise Therapy
Following a highly successful email campaign by #MEAction Scotland asking people to contact their MSPs and demand that the Health Secretary withdraw GET as treatment in Scotland, the Government announced that it had commissioned the Scottish Health Technology Group to conduct a rapid review of GET for ME and post Covid-19 fatigue. In September, it was announced that as a result of the review a warning would be added to the Scottish Good Practice Statement on ME that GET should be used with caution, with Health Boards and GPs notified of this update.