UK Parliament

#MEAction UK’s parliamentary work involves a team of dedicated volunteers and thousands of constituents who have been engaging in campaigning since the organisation’s launch.

Our aims

#MEAction UK works to educate MPs about the injustice and neglect faced by people with ME, galvanising them to take action with and on behalf of their constituents.

Awareness

To raise the profile of people with ME with MPs and call on them to support their constituents with ME.

Action

Encouraging MPs to support our campaigns and bring pressure to bear on the government to make meaningful change.

Research Funding

To persuade Parliament to ring-fence funding for ME research in line with disease prevalence and burden.

GET INVOLVED

2021 MillionsMissing announcement for the week of May 12th
#MillionsMissing

Get ready for #MillionsMissing

We are gearing up for #MillionsMissing 2021! This year will be a week long event, from May 9 to 15, of action and activities to strengthen our community, and fight for recognition, research and medical education for myalgic encephalomyelitis (ME). Check out our website for the #MillionsMissing timeline of events, grab your t-shirt, and plan a local event!  We

Take Action »

To find out how you can help with our Parliamentary campaign, contact us today or follow us on social media to see regular updates.

How to set up a meeting with your MP

Meeting  your MP, virtually or personally, can help gain valuable support for you and for the ME community.  To make it as easy as possible we have put together a step-by-step guide.

Meeting Preparation

cONTACTING YOUr MP

The Meeting

Social Media Tools

Resources

Have you contacted your MP?

#MEAction Uk and Parliament

Galvanising the support of a small number of MPs has enabled us to challenge decisions by government funded bodies and turn up the heat on the medical research funders. Politicians are taking note and progress is being made, but we’ve got a long way to go yet.

September, 2017

Early Day Motion 271

On the 6th September, Early Day Motion (EDM) 271 is tabled calling on NICE to overturn their original decision and agree to review and update the guidelines on ME.

September, 2017

October, 2017

UNREST SHOWN IN PARLIAMENT

Our Parliamentary presentation and showing of the film Unrest, directed by the co-founder of #MEAction, Jennifer Brea, helped 40 MPs understand the devastating nature of ME, focused attention on how NICE guidelines had let individuals down and the need for more research funding.

October, 2017

February, 2018

First Westminster Hall debate on the PACE trial

#MEAction UK ran a campaign to urge MPs to attend the first Westminster Hall debate on the PACE trial and its effects on people with ME.

Carol Monaghan MP, who secured the debate, raised many valid and important concerns, as did several MPs who intervened during her speech. However, there was a disappointing response from the Minister for Care.

February, 2018

May, 2018

Early Day Motion 1247 Turns Up Political Volume

#MEAction UK created tools to to help people encourage their MPs to sign EDM 1247.

The motion turned up the heat by acknowledging the detrimental effect of the PACE trial and recognising the work being done by organisations such as #MEAction to highlight ME as a physical condition.

May, 2018

June, 2018

Second Westminster Hall Debate on the PACE Trial

#MEAction worked with other charities to prepare a parliamentary briefing for this debate. MPs then called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients consistently reported being harmed from attempting to undergo this treatment. 

June, 2018

January, 2019

HOUSE OF COMMONS MAIN CHAMBER DEBATE

#MEAction UK coordinates the community in sending almost 3000 messages to MPs, imploring them to speak up on their behalf and ensuring the human cost of this devastating disease is heard in the corridors of power during this historic debate on the treatment and funding of patients with ME led by Carol Monaghan MP.

The motion was passed unanimously.

January, 2019

January, 2020

ALL-PARTY PARLIAMENTARY GROUP (APPG) ON ME REVIVED

Disbanded in June 2017, Carol Monaghan MP led the revival of the group to work on behalf of  the 250,000+ people in the UK with ME.  Please encourage your MP to attend future meetings of the APPG: click here for information to help you.

January, 2020
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