PE01690: Review treatment of people with ME in Scotland


Petitioner: Emma Shorter on behalf of ME Action in Scotland


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).


Petition History:

1,274 off-line signatures have been collected.


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?

I have had M.E. for the past 8 years and have lost my twenties. My potential has been wasted because I am living with an incurable illness. There are over 20,000 people with ME in Scotland. I am aware that £90,000 has been invested by the Scottish government towards research and that cuts mean that difficult decisions have to be made in regards to spending. However I have to be worth more than £4.50! ME has to be understood and cured and there needs to be more investment to do this. I deserve a better quality of life than what I have just now. I want to be a part of and contribute towards scottish society. I want my life back.

Eilidh Clements

23:46 on 31 May 2018

I have suffered ME for nearly 5 years. It has affected my whole life.

Katrina Evans

22:03 on 31 May 2018

This is an essential and long-overdue review into the funding of research into ME which offers the chance for Scotland to become a beacon of excellence in this field. It is also an opportunity to increase specialist care and support for those affected.

Lucinda Byatt

19:28 on 31 May 2018

Cure ME. I've suffered this for over 60 yrs.

Rebecca Sears

17:38 on 31 May 2018

I've suffered from M.E. over the past 25 yrs.

Patricia Brown

17:19 on 31 May 2018

A friend's daughter, in Scotland, is suffering from ME.

Flora Alexander

16:57 on 31 May 2018

A member of my family suffers from this and has gone since she turned 12 Scotland do not have virtual education and we were put through the mill where officials did not believe her condition so much more needs fonexto help

Lindsey Patrick

14:25 on 31 May 2018

HwbGJC Major thankies for the article.Really looking forward to read more.

suba me

22:17 on 30 May 2018

I have a very close friend suffering from this illness and there is very little known about it and how to treat the illness. More needs to be done to understand and cure this illness and treat patients

Samantha Campbell

14:22 on 30 May 2018

PLEASE help people suffering with this life changing and debilitating illness. We need your support urgently. Show the world you care Thank You.

Ann Bewick

11:27 on 30 May 2018

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