#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.
#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.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the
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.
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.
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.
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.
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.
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.
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.
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.
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.