NEWS

MEAction UK is now officially an independent UK registered charity

On Wednesday 14th May 2025, #MEAction Scotland held Millions Missing Scotland outside the Scottish Parliament in Edinburgh.

#MEAction Scotland will be outside Scottish Parliament in Edinburgh on Wednesday 14th May, from 12–2pm, calling on the Scottish Government to act on its promises.

Read #MEAction Scotland's 2024 Impact Statement.

Volunteers from #MEAction Scotland and Long Covid Scotland talked to over 60 MSPs at an Information Stall in the Scottish Parliament.

#MEAction Scotland has refreshed and updated its strategic priorities for the period 2024-2026.

This global #MEAction initiative aims to raise awareness among medical professionals of the challenges faced by ME/CFS and emphasise the need for healthcare education about this condition.

The annual report covering what #MEAction UK has done in the year 10/2022-10/2023.

See #MEAction Scotland's impact statement for the period between 3/2022 and 5/2023.

Both the UK and Scotland branches of #MEAction will start using updated figures for the prevalence of ME, based on a recent US survey.Unfortunately, all prevalence estimates for ME are of limited accuracy. This is due to a range of factors including, but not limited to, uncertainty around diagnosis, lack of confidence among healthcare professionals, and possible confusion with overlapping conditions. However, it is necessary for our campaigning work to decide on a figure, and

As a charity we were pleased to be able to submit a longer response than is possible using the online survey. Below is the text as submitted to the DHSC. (PDF version available here)This response is submitted by #MEAction Scotland, the Scottish arm of #MEAction UK, a not for profit organisation. Our response is based on the two areas identified in the Foreword of the Interim Delivery Plan (IDP) where it states that the “Scottish Government is keen to understand the views of s

On 16th May 2023, the Scottish Government published the findings from an analysis of surveys issued to NHS Health Boards to understand delivery of ME services and implementation of the updated NICE guideline. #MEAction Scotland welcomes the survey activity and report, as it provides useful evidence about the current issues people with ME are facing across Scotland. We appreciate the acknowledgement in the report that this survey was a direct result of our meeting with the the

This year, #MEAction Scotland’s #MillionsMissing campaign focussed on raising awareness of the reality of living with ME and called for education and training for healthcare professionals to improve support for people with ME across Scotland.Ahead of ME Awareness week, we put out a call, alongside #MEAction UK, to ask members of the ME community to join our digital campaign. The campaign asked people to share photos based on two ideas – their view of living with ME or the spa

This year, #MEAction Scotland will be doing smaller, more focused activities for #MillionsMissing than previous years, and we are asking the community to take part in the digital campaign, rather than joining us in person. We also need people to email their MSPs, which there is information about below.Volunteers are planning two main activities during ME Awareness Week in May.Parliamentary event for MSPs - 9th MayFollowing the successful debate in the Scottish Parliament in F

May is nearly here and that means so is ME Awareness Week and #MillionsMissing! This year, #MEAction Scotland and #MEAction UK are returning to the central theme of #MillionsMissing - drawing attention to the people missing from their previous lives and wider society because of ME.Most people don’t understand how widespread ME is, or that so many in our community have been ill for decades. We want to flood social media with powerful images that show the reality of life with M

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023. The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The intention was to use this document as the vehicle to bring Scottish guidance in line with the NICE guideline for

Article summary: Sue Webber MSP’s Member’s Business debate took place in the Scottish Parliament on Thursday 2nd February, 2023. It was a successful debate with a good turnout of MSPs from across all parties, and it had to be extended due to the amount of MSPs who wanted to speak. There were calls on the government to pilot specialist services, fund research, and implement the NICE guideline. Many MSPs shared stories that people had sent them and talked about how many people

After many, many months of writing, editing and revising, #MEAction Scotland is finally ready to launch its manifesto! Thank you to all...

After the recent RCGP Annual Primary Care Conference & Exhibition held in Glasgow, it seems appropriate to reflect on the impact of the conference on educating GPs about ME/CFS.

#MEAction Scotland appeared before the Scottish Parliament Petitions Committee on June 7th to give evidence on its petition to review treatment of ME patients in Scotland.