#MillionsMissing 2023: Scotland calls for healthcare education

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 spaces people with ME are missing from. There were lots of powerful and moving contributions and we’re very grateful to everyone who took part.

A screenshot of a tweet by someone named Rachel. The text says ‘I loved running, biking and hiking, in the Highlands, Scotland where I live. It all came to a grinding halt 18 months ago after I got what we now think was covid and led to Myalgic Encephalomyelitis. The photo is of a well-used pair of running shoes on a patch of mossy grass.
A screenshot of a tweet by someone named Laurie M. The text says ‘I am one of the Millions Missing - about 50% of my time is spent in bed, with a view that occasionally has a rainbow but more often than not involves closed curtains due to light sensitivity when I have post exertional malaise (PEM). We need treatment plans and cures. The photo is of a view out a window of a grey cloud with a rainbow.

#MEAction Scotland then picked a selection of these photos from people across Scotland and had them printed on large boards, which we took to our #MillionsMissing activities. They provided an important visual representation of the reality of living with ME to support our conversations.

Our first activity was at the Scottish Parliament on Tuesday 9th May. Sue Webber MSP, who also led a debate on ME earlier this year, hosted a drop-in event where MSPs could stop by to talk to #MEAction Scotland volunteers and learn about the issues facing people with ME in Scotland. Twenty MSPs from across parties attended and had conversations with volunteers, many of us people with ME and carers. This was a successful turnout for an event of this kind and has helped us continue to build relationships with MSPs who can put pressure on the government to deliver on their promises. Thanks to all the MSPs who attended.

On 12th May, International ME Awareness Day and the traditional day for #MillionsMissing, a group of our volunteers stood outside the Royal College of Physicians Edinburgh to draw attention to the lack of healthcare education on ME. We handed out information about ME to doctors going into the building, including details about how to find and complete the CPD module developed by Dr Nina Muirhead. Many of the doctors were attending a meeting of the Scottish Society of Rheumatology. We also delivered a letter for the Dean of Education, Dr Kerri Baker, asking for the development of training on ME in line with the 2021 NICE Guideline. The letter highlighted the current lack of awareness of the guideline among healthcare professionals and the fact that patients are still reporting being offered outdated treatments. Following this, a member of the College has contacted us to offer their support.

Three ME Action volunteers standing outside the Royal College of Physicians Edinburgh. They are holding leaflets and an addressed envelope.

Thanks to everyone who took part in the digital campaign, emailed their MSPs to ask them to attend the event and supported us on social media. #MillionsMissing is an important moment, but our work fighting for the ME community across Scotland continues all year round. 

To keep up to date with our progress you can follow us on Facebook, Twitter and Instagram, or sign up to receive our emails (make sure you select Scotland where you have the option).


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