Volunteers from #MEAction Scotland and Long Covid Scotland talked to over 60 MSPs (Members of the Scottish Parliament) at an Information Stall in the Scottish Parliament from 5th-7th November. Ben Macpherson MSP for Edinburgh Northern and Leith sponsored the stall on behalf of #MEAction Scotland as we aimed to make MSPs aware of the desperate need for support for people with ME, including thousands with Long Covid who have ME-like symptoms.
The success of the stall was due not only to the hard work of our volunteers, but also the many people from the ME community who emailed their MSPs asking them to visit the stall. We know from the comments from MSPs that this motivated many of them to come and learn more about ME and what they could do to help their constituents.
Volunteers engaged with MSPs from all political parties, handing out flyers explaining how they could help people with ME and information on ME and Long Covid.
There is currently only one specialist ME service in Scotland (in Edinburgh), and no consultants or specialist nurses to support people with ME. This leaves many people with ME without support or, perhaps worse, being offered treatment such as graded exercise therapy. We have been campaigning for nearly three years for the Scottish Government to fulfill its commitment to implement the 2021 NICE guideline in Scotland and we hope that raising awareness of this commitment will lead to them finally taking action.
We were pleased that 59 MSPs signed our pledge to support our call for ME services and specialist leads in ME in Health Boards across Scotland. This represents over 60% of the 104 MSPs who could sign. (There are 129 MSPs, but the 25 Cabinet Secretaries and Ministers are unable to sign the pledge due to the Scottish Government’s principle of collective responsibility).
The turnout at the stall confirmed strong, cross-party support for ME within the Parliament, and we will aim to leverage this support to push the Scottish Government to deliver on its promises. We were encouraged that both Neil Gray, Cabinet Secretary for Health and Social Care, and Jenni Minto, Minister for Public Health and Women’s Health, visited our stall to hear about the challenges faced by people with ME. Our campaign, running since 2017, has led to several government reports and the development of a training module for GPs. However, despite these efforts, the government has yet to take any meaningful action to address the dire situation in our health boards.
STOP PRESS: Good news in the Scottish Budget of 5th November with the announcement of funding for new services for ME. The Government has committed to an “additional £4.5 million funding to deliver new specialist support across the country for new services for Long Covid, ME, Chronic Fatigue and other similar conditions”. #MEAction Scotland welcomes this new funding for ME specialist support, but will continue campaigning to make sure that the support and services are relevant to people with ME and follow the 2021 NICE guideline on treatment of ME.
What next?
As a result of discussions at the stall, #MEAction Scotland emailed further information on ME to Gillian Mackay MSP Scottish Green Party Spokesperson on Health and Social Care and Brian Whittle MSP, Scottish Conservative Shadow Minister for Public Health, Social Care, Mental Wellbeing and Sport. This resulted in ME being mentioned in the debate in the Scottish Parliament on the next stage of the Women’s Health Plan on 13th November.
In the week following the stall, we had a very useful meeting with Jackie Baillie, Scottish Labour Spokesperson on Health. We discussed the actions that Jackie will take to support us and she gave us useful advice on how we can maximise the impact of the support shown by MSPs at the stall. We are planning further meetings once MSPs return from the Parliamentary recess in January.
Five MSPs have already asked Parliamentary Questions as a result of our stall and one has written to their NHS Board to ask them what they are doing to improve services for people with ME. Parliamentary Questions are a key tool for raising political awareness and holding the government to account. Our next challenge will be to encourage parties to translate this political support into manifesto commitments for the Holyrood elections in 2026.
List of media coverage
As result of sending out a media release in the run up to the Information Stall, articles appeared in the following media:
The Times: Campaigners warn of preventable deaths from ME in Scotland
The Edinburgh Reporter: It is “only a matter of time” before someone with ME dies in Scotland as a result of poor healthcare support
https://theedinburghreporter.co.uk/2024/11/calls-for-government-support-for-people-with-me/?
Article by National World journalist in the Scotsman and numerous regional newspapers across the UK
https://www.scotsman.com/health/me-chronic-fatigue-syndrome-tired-doesnt-even-describe-it-4897269
