We are building a movement at #MEAction UK. Join us!

#MillionsMissing – organised by #MEAction – has been such a successful campaign this year, and we thank everyone in the ME community for your part in this.

At #MEAction UK we are building a movement. We’ve grown #MillionsMissing, a campaign for health equality for ME, from a single protest in London in May 2016 to this year having events covering every UK region. We have given people with ME visibility in 26 cities and towns around the UK; their stories represented by empty shoes and other eye-catching displays.

There’s been more UK press coverage than ever (34 hits!) leading to more public awareness, not only of myalgic encephalomyelitis (ME) but of the inequality in research funding. It gives hope to people with ME that we’re on the verge of change, and #MillionsMissing has made you feel you can be part of that, with tools you can use to make that happen.

Why get involved with #MEAction

Getting involved with #MillionsMissing, as an organiser or by taking part in an event, leaves you feeling part of a community. We see that on social media and in the emails we receive. People who have been inspired by our vision and a shared belief that everyone has a part to play in making change happen for people with ME, whether you are bedbound or able to be an active volunteer with #MEAction.

Giving people with ME a voice is exactly what grassroots advocacy is about. It’s campaigning for change and putting pressure on governments to face their funding responsibilities and recognise that research and medical education around ME needs more investment to protect people from harm.

#MillionsMissing Glasgow 2019. Credit: Wendy Milne

What we do at #MEAction UK

At #MEAction UK we have galvanised people to contact their MPs and hundreds of you invited them to attend the ME debates in the House of Commons. We created a tool for you to easily do this, and many MPs attended that debate simply because they had been asked by their constituents to do so. Carol Monaghan, MP, spoke at #MillionsMissing in Glasgow and emphasised how it important it is that we all continue to put pressure on our MPs. We will be adapting our tool so that it can be used year round and not only for parliamentary debates.

In November, when the NICE panel began to be announced, we developed a tool enabling thousands of you to register your shock and disappointment at some of the appointees. At Christmas, we asked people in the ME community to send a Christmas card to NICE to tell them what we wanted for Christmas.

The pressure on NICE continues. It’s crucial that NICE feels this and are aware that the community being represented must be appropriately represented on the panel. We are developing new ideas for how we can empower you to contact NICE, and to remind the NICE guideline committee that they have a responsibility to make sure the new guidelines follow the best scientific evidence, are fit for purpose and protect people with ME from harmful and ineffective treatments.

Behind the scenes at #MEAction UK, we are developing our outreach work, creating and building relationships with other organisations and Parliament where the needs of people with ME are paramount and/or represented. We’ve grown relationships with prominent supporters and ME patients. We are spreading the word that ME is a disease that affects all aspects of our lives and as such it falls under the responsibility of all health and support organisations.

We are part of the Forward ME Group where we are working with other leading ME charities to achieve our shared goal; that ME is finally taken seriously and funded by the government in accordance with its prevalence and severity. We believe in collaboration, with other charities and with the ME community.

#MillionsMissing Sheffield 2019

Why we need YOU to join the movement!

We can’t do this without you, because #MEAction is for you. We are empowering a community that has been dismissed and silenced for decades. We are harnessing your enthusiasm, your creativity, and turning this into activism. Volunteers and staff at #MEAction and #MEAction UK are working with you and putting many hours behind the scenes so that we can achieve this. We thank you for your participation, your willingness to respond to our campaigns, and your ideas and input into how we can continue to make sure that your needs as ME patients and carers are not ignored by those in authority.

We encourage you to volunteer and join our team and to urge your friends and families to come on board. Most of our projects, articles, and actions have been undertaken so far by a person with ME or their carer. In the aftermath of big events such as the parliamentary debate and #MillionsMissing we are aware more than ever how important healthy allies are to our cause; volunteers who can maintain the momentum while so many of us need to rest and focus on our own health.

Advocacy and putting pressure on those in authority is how we get equality in health, attitudes and priority. We are not only giving you a voice and the tools to use this, but a belief that we are all working together towards change.

We are #MEAction UK and believe that this is the way to change the future for ME. A huge thank you to all of you for your support and for working with us to achieve this.

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