Scottish Parliament
#MEAction Scotland's aim is to reach politicians to communicate the urgent need to address healthcare inequalities and provide effective support for adults, children and young people with ME. We work with civil servants, Members of the Scottish Parliament (MSPs), Government Ministers and Health Boards to to achieve our objectives.
Our campaign started with presenting a petition to the Scottish Parliament, and since then we invited MSP's to show their support for #MillionsMIssing, responded to any relevant consultations, and held meetings with dozens of civil servants, MSPs and Ministers.
Our Aims
To raise awareness of ME and the need for support for people with ME in Scotland.
To ensure that Government funding allocated to ME is spent effectively to support people with ME.
To support #MEAction UK's campaign for ring-fenced funding for research in line with disease prevalence and burden.
Contact Your MSP
#MEAction Scotland has developed a guide to give you the basic tools to help you feel confident in meeting your MSP. Click the button below to read it now.
Please let us know if you receive a response from your MSP by emailing scotland@meaction.org.uk. The information you provide will help us develop our campaign!
Timeline of #MEAction Scotland's Parliamentary Campaign
#MillionsMissing Outside the 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 Scottish 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.
#MEAction Scotland Petition Submitted
Over 7,000 people signed #MEAction Scotland's petition urging the Scottish Government to review the level of support for people with Myalgic Encephalomyelitis (ME) in Scotland. Emma Shorter, Janet Sylvester and Professor Chris Ponting addressed the Committee. Watch the video of Emma Shorter's speech to the Petitions Committee here.
Scottish Government Announces First ME 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 for 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 development of the module was delayed until after the publication of the NICE guideline on ME/CFS.Government Publishes Review of 2010 Healthcare Needs Assessment for ME
The Scottish Government published a report assessing what, if anything, had changed since the publication of the 2010 Healthcare Needs Assessment of people living with ME/CFS. As identified in #MEAction Scotland's review of the report, the findings highlighted repeated failures to provide support for people with ME. The 2020 report was commissioned by the Government in response to #MEAction Scotland's 2018 petition which called for improved treatment for people with ME. .
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. The final report on the top 10 priorities was published in 2022.
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.
Healthcare Improvement Scotland Carries out Consultation on ME services
Following discussions with #MEAction Scotland and other ME charities, Healthcare Improvement Scotland launched consultations and a survey to find out what good care looks like for people with ME. The resulting Gathering Views report identified the issues faced by people with ME living in Scotland and set out a recommendations on diagnosis, support and care.