Petitioner: Emma Shorter on behalf of ME Action in Scotland
Status:
Closed
Date Lodged:
31 May 2018
Calling on the Scottish Parliament to urge the Scottish Government to review the level of support for people with Myalgic Encephalomyelitis (ME) in Scotland with a view to:
- Investing in biomedical research and creating a centre of excellence for ME
- Ensuring healthcare professionals' training and education materials reflect the latest scientific evidence
- Providing specialist care for patients and discontinuing the harmful treatments graded exercise therapy (GET) and cognitive behavioural therapy (CBT).
1,274 off-line signatures have been collected.
Summary:
7 June 2018: The Committee agreed to write to the Scottish Government, NHS boards and other stakeholders. Link to Official Report 7 June 2018
8 November 2018: The Committee agreed to invite the Cabinet Secretary for Health and Sport to give evidence at a future meeting. It also agreed to write to Health Boards which have not yet responded to its previous questions. Link to Official Report 8 November 2018
24 January 2019: The Committee agreed to write to the Scottish Government. Link to Official Report 24 January 2019
30 May 2019: The Committee agreed to invite the Cabinet Secretary for Health and Sport to give evidence at a future meeting. It also agreed to write to health boards who had not replied to the Committee's previous request for information in addition to NHS Borders and NHS Lothian. Link to Official Report 30 May 2019
19 December 2019: The Committee agreed to reflect on the evidence heard at a future meeting. Link to Official Report of Meeting 19 December 2019
26 August 2020: The Committee agreed to close the petition under Rule 15.7 of Standing Orders on the basis that the level of research into ME has increased, the Scottish Government has committed to ensuring healthcare professionals' training and education materials to reflect the latest scientific evidence in light of the forthcoming NICE review, and the Scottish Government has advised that people should not be pressed into accepting unwanted GET and CBT treatments. Link to Official Report of Meeting 26 August 2020
Written submissions:
Would you like to see improved care and treatment for people with ME in Scotland?
What level of support do you think the Scottish Government should provide for ME patients?
Should Scottish Government funding be commensurate with disease burden?