People disabled by ME and Long Covid across the UK send out an SOS. 

It’s time to send out our SOS signal, if we want to have funded research.

May 12th is Myalgic Encephalomyelitis Awareness Day. On this day, the #MillionsMissing with myalgic encephalomyelitis (ME) gather to demand an increase in research and care for people with ME. In the UK people with ME finally had the possibility of significant research funding from the government through the ME/CFS Delivery Plan.  With no money allocated to date in the Delivery Plan hopes of progress are dwindling.  Now we want to make sure that people with ME get the money desperately needed to fund research.

#MEAction UK encourages all people with post viral illness and disabilities to join this fight. It’s time to send out our SOS signal.

How to Participate in the UK

Postal and online campaign

We want to flood the funding organisations in real life and online with our SOS messages.

In the UK we are concentrating on getting research into ME fully funded in the ME/CFS Delivery Plan.  Use all the tools below and your own imagination to craft an SOS that can’t be ignored.   Send your SOS to the government, the Medical Research Council (MRC), Department of Health and Social Care (DHSC) and National Institute for Health and Care Research (NIHR) using the addresses below.  Tell them your story and why properly funded research into ME is vitally important to you. 

Your SOS could be a photograph, a painting, a cake, a card, a story, a letter, a film, a pillowcase, embroidery … anything that can be delivered can be used!  In 2018 we asked you to send Christmas cards to NICE as part of our Science Not Stigma campaign to persuade them to reopen the NICE guidelines and we know that the personal stories they received made a difference.  

Send your SOS to the addresses below and then post it on social media on May 12th and tag us at @MEActNetUK so we can share your work using the hashtag #DisabilitySOS and #MillionsMissing.  If you don’t want to share on social media yourself just email us at  [email protected] and we will share it for you.

To get the attention of the organisations above you can also tag them on social media if you use it.  We have listed their handles below.

Remember to let your MP know what you are doing and why funding research into ME is so important to you and your family.

Step-by-Step Guide

1. Write, paint or craft your SOS
2. Remember to take a photograph or copy of your message and then send your SOS to the DHSC, MRC and NIHR addresses listed.  Post from early May so they arrive in time for May 12th.
3. Share a copy of your SOS  on social media on 12th May and tag us at @MEActNetUK using the hashtags #DisabilitySOS and #MillionsMissing so we can share your work online.  If you don’t use social media, email a copy of your SOS to us as soon as you can at [email protected] and we will share it for you.
4. If  posting your SOS takes too much precious energy then take part virtually on 12th May by sharing your SOS on social media.

ADDRESSES

Medical Research Council (MRC)

Professor Patrick Chinnery
MRC Executive Chair
Medical Research Council (MRC)
Polaris House,
North Star Avenue,
Swindon,
SN2 1FL

Professor Lucy Chappell
Chief Scientific Adviser
Medical Research Council (MRC)
Polaris House,
North Star Avenue,
Swindon,
SN2 1FL

Social media links:
Facebook: @MRCComms
X: @The_MRC
YouTube: @medicalresearchcouncil/community
Email: [email protected]

Department of Health and Social Care (DHSC) 

The Rt Hon Wes Streeting MP
Secretary of State for Health and Social Care
Ministerial Correspondence and Public Enquiries Unit
Department of Health and Social Care
39 Victoria Street
London
SW1H 0EU

Social media links:
FB @wesstreetingmp
X @wesstreeting
Insta @wesstreeting
LinkedIn @wes-streeting-mp

Ashley Dalton MP
Parliamentary Under-Secretary of State for Public Health and Prevention
Ministerial Correspondence and Public Enquiries Unit
Department of Health and Social Care
39 Victoria Street
London
SW1H 0EU
United Kingdom

Social media links:
Ashley Dalton 
FB: @AshleyDaltonLabour
X: @AshleyDalton_MP
Insta: @ashleydaltonmp
LinkedIn: @ashley-dalton-mp

Professor Chris Whitty
Chief Medical Officer, Permanent Secretary
Ministerial Correspondence and Public Enquiries Unit
Department of Health and Social Care
39 Victoria Street
London
SW1H 0EU
United Kingdom

Social media links:
X @CMO_England
Insta @chriswhitty_uk
DHSC 
Facebook: @DHSCgovuk
X: @DHSCgovuk
Email: [email protected]

National Institute for Health and Care Research (NIHR)

Dr Gail Marzetti 
CEO
NIHR
Grange House, 15 Church Street, 
Twickenham, 
London, TW1 3NL. 

Social media links:
Facebook: @OfficialNIHR
X: @NIHRresearch
Email: [email protected] 

Scotland

For #MillionsMissing 2025 in Scotland, we’re raising a red alert. The Scottish Budget pledged £4.5m to deliver specialist support for ME, Long Covid and other similar conditions, and the clock is ticking to spend it.

Join us outside The Scottish Parliament in Edinburgh between 12-2 pm 14 May or you can support online. We’ll share materials that will offer guidance on contacting your MSP about it very soon.

There are many other ways to participate in our SOS Protest: 

• Host an event in your local community
• Create art! 
• Show up from home
• Tell your Story! Join our storytelling workshop

1. Host an Event in your local community 

There are many ways to hold an event in your local community ranging from a formal protest to a community gathering in a park or garden.  

• Protest in front of your local government building or local landmark. Protesting in front of a government building will likely require permission – please check. 

• Gather your local community in a park, at home or in your garden with your SOS signs for a photo op to share on social media tag the DHSC, MRC and NIHR and then send the photo to them in the post and tell them why funding into ME research is urgently needed.

*We highly encourage masking indoors, and outdoors if you are in close proximity.

To host an event: 

•  Please fill out this form. 

Resources: 

• Messaging ideas around these issues – see here 
• How to create a dramatic protest – coming soon! 
• How to take photos, videos & live stream your event – coming soon! 
• Fact Sheet – coming soon! 

2. Create Art

Create an SOS signal in the form of art. This can be done using any type of medium and can be used in person, sent to the DHSC, MRC or NIHR or shared on social media. Share on May 12th using the hashtag #DisabilitySOS and #MillionsMissing. 

Want to build one giant SOS art as a group? We love it. Want to create something independently, we love it! We need to flood the internet so we are not silenced!

Art has long been a form of political protest and resistance. #MEAction has hosted dozens of artist events with people around the world. Your talent and intellect is inspiring! Let’s use it for resistance to fight for what people with disabilities need and deserve!

Resources: 

• Messaging ideas around these issues – see here 
• How to create a dramatic protest – coming soon! 

3. Show up from Home

Take a photo of yourself with a sign or art that illustrates your SOS signal – or use one of our premade signs, send to the funding organisations  and share on May 12th. | See Messaging ideas here & art ideas here.

Storytelling training: Your personal stories are the most compelling way to get attention and attract others to join our fight. 

Sign up for our storytelling training – expert storyteller, Kirsten Ferrell, will lead our community in a storytelling training that will enable us to share our stories in a way that leads to change. This training will be on Sunday, April 27th at 12pm PT/3pm ET/8pm UK. Register here.

On May 12th, share your 1 minute story on social media. Use the hashtag #DisabilitySOS and #MillionsMissing, and tag @MEActNetUK

UK recommended hashtags: #MillionsMissing, #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #disability #chronicIllness 

Social examples from previous #MillionsMissing protests: 

Art Examples from Previous Events: →

	Shelter in Place
Waiting for a Cure	Body Map

See more examples of art created by the ME community here: 

• #MillionsMissing: 7 Days in Self Portraits with ME/CFS
• Severe ME Artist Gallery, 2023 

4. Storytelling and Press Attention

Your personal stories are the most compelling way to get attention and attract others to join our fight. They are also the most powerful tool for reaching out to Congress, and sharing your story with the press. 

Sign up for our storytelling training – expert storyteller, Kirsten Ferrell, will lead our community in a storytelling training that will enable us to share our stories in a way that leads to change. This training will be on Sunday, April 27th at 12pm PT/3pm ET/8pm UK. Register here.

On May 12th, share your 1 minute story on social media. Use the hashtag #DisabilitySOS and #MillionsMissing, tag @MEActNetUK.

Other recommended hashtags: #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #disability #chronicIllness

UK Messaging Points

We are building our messaging around the government’s refusal to commit funding for the ME delivery plan which will have dramatic impacts on ME communities. Incorporate these talking points into your protest or gathering as you see fit: 

• Research Funding – 

Slogan examples:  Science Saves Lives – Fund the Delivery Plan! /   Invest in Research, Invest in the Future! /  More Science, Less Politics! /  Fund The Plan!/