This year, Millions Missing Scotland is raising a red alert. Will you be part of it?

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

Around the world, millions are missing – from school, work, communities, and everyday life – due to ME. They are dismissed and disbelieved, left without support. In Scotland, we’ve had over 20 years of reports and recommendations which haven’t translated into improvements for people with ME. We need urgent, meaningful action.

The theme this year is red alert for ME. You can join us in asking MSPs to come out and support our urgent call for real action over warm words. In the 2025-26 Scottish Budget, the government committed £4.5 million to deliver specialist support for people with ME, Long Covid, and other similar conditions. The government is in the early stages of planning how the funding will be spent and consulting with health boards but, with less than a year to use the funding, it needs to move fast.

#MEAction Scotland has shared an initial proposal with the government for how to develop support, including healthcare education, specialist departments and collaboration with research, which has been well received. We’ve also offered to input and feedback on plans as they develop. Our campaign will keep up pressure on the government to move forward at speed and demonstrate how urgently support is needed for the ME community.

Inside the parliament, we’re also hopeful that a debate will take place at some time during ME Awareness Week (12-18th May). We’re talking to some MSPs about hosting this but may not find out until just before the date. Sharing your story of how ME has impacted you and the lack of support is a very effective way to encourage MSPs to speak in the debate, so this is also an opportunity to provide them with that information ahead of ME Awareness Week.

Alongside our campaign in Scotland, we’re supporting #MEAction UK’s SOS campaign for research funding, which is another vital part of what’s needed to improve things for people with ME. Since health is the responsibility of the Scottish Government and they have made this commitment to specialist support, it’s important that our campaign focuses on the situation in Scotland at this crucial time.

What can you do?

We’re asking MSPs from all parties, across all regions, to respond to the red alert and come out to speak with us on the 14th. There’s information on how to find out who your MSPs are and how to contact them in the next section of this article. Here are some ideas of how you can support:

• Email your MSPs using our template below and ask them to meet us on the day. Please add your experience of ME if you feel able to and let them know they can use it as part of their contribution to a debate if it takes place, if that’s something you’re comfortable with.
• Tag your MSPs on social media and encourage them to come out and see us. If you use Canva, you can use our template to create your own graphic.
• Share your story or messages online using the hashtag #MillionsMissing.
• Join us in person. The more people we have outside the Scottish Parliament, the louder our message will be. If you’re interested in speaking at the rally or supporting in another way, please email us scotland@meaction.net. (We understand this won’t be possible for many people with ME.)

If you receive responses from your MSPs, particularly if they say that they will join us on 14th May, we would really appreciate it if you could share them with us at scotland@meaction.net.

Who are your MSPs?

If you’re not sure who your MSPs are you can put your postcode into the search function on the Scottish Government website to find out. If you click on the individual MSPs in the search results, you will see their email address and links to their social media profiles.

You will have eight MSPs who represent you – one constituency MSP and seven regional MSPs (don’t worry about your MP as it’s a Scottish Parliament event). It would be great if you could email as many of these MSPs as you can.

Together, we can make this red alert impossible to ignore.

Template email

The bold sections in square brackets are for you to customise.

Subject: Red alert for ME: Show your support at Holyrood, Wednesday 14th May

Dear [MSP’s Name] MSP,

I am writing as your constituent to ask you to join people with myalgic encephalomyelitis (ME) and their family, friends and carers outside the Scottish Parliament on Wednesday 14th May, between 12–2pm for Millions Missing Scotland 2025.

ME is a profoundly debilitating, complex energy-limiting disease, affecting multiple systems within the body. The rally is organised by the volunteer group #MEAction Scotland and the theme this year is red alert for ME. It’s an urgent call on the Scottish Government to act on its commitment to spend the £4.5 million announced in the 2025-26 Scottish Budget for specialist support for ME, Long Covid and similar conditions. With less than a year left to use the funding, we need urgent, meaningful action.

People like [me/my partner/my friend] are missing – from school, work, communities, and everyday life – along with the 58,000 other people in Scotland living with this debilitating condition.

[Add your personal story or connection with ME, the impact it has had on you/the person you care about, and (if applicable) how the lack of support in Scotland has made this worse.]

After more than 20 years of reports and recommendations from the Scottish Government, we need to see their warm words turned into action. I hope you will take this chance to show your support by coming out to meet the people who can make it to the rally outside Holyrood on the 14th, and take the opportunity to hear directly from those affected.

If you are unable to join in person, you can alternatively offer your support by writing to NHS [your local health board] to ask how they will use the funding to support people with ME, in line with the NICE Guideline.

We are also hoping that a debate will be announced during ME Awareness Week (12-18th May) and, if it is, please take part and support people with ME in your constituency. You can use my experience, as shared above, in your contribution.

I would appreciate a response that outlines how you will support people with ME to make sure this issue gets the attention and investment it deserves.

Yours sincerely,
[Your Name]

[Your address including postcode – include this so the MSP can confirm you are in their constituency]