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#MEAction UK

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Current UK calls to action

 Follow up on the ME debate. Send your MP an email thanking them for attending the House of Commons debate on ME on January 24th. You can also send them a summary of what happened if they didn’t attend using our online tools here
NICE Call to Action Take the survey for NICE. NICE is rewriting the UK ME guidelines. As part of this process, the Forward-ME Group, of which #MEAction UK is a member, has prepared a questionnaire to provide additional evidence on cognitive behavioural therapy (CBT) and graded exercise therapy (GET) to NICE. The new guideline is expected to be published in October 2020. Take the survey here.
Support our UK work Suppport our UK work. Support and grow our UK work by donating to our UK fundriaser! #MEAction’s vision for the next few years is of powerful, local organising and outreach that is networked and coordinated for national and global impact. Donate now.
How to get involved

To get more involved in advocacy, education, and outreach in the UK, contact uk@meaction.net. You can also join a local Facebook group. Or, make an appointment to talk to a community organizer if you have questions about how best to get involved.

Create an action | Launch a petition | Start an event | Join a group | Talk to us
Tools
MM 2019 UK Leaflet
ME UK Factsheet
UK toolkit: How to meet with your MP
ME Debate Parliamentary Briefing
#MEAction ME/CFS Research Summary (2017)
Latest UK News & Actions

#MillionsMissing from ME: Your Stories

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Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. We received heart felt stories from around the globe chronicling journeys with ME. This week we touched on parenting, aging, marginalization, and careers. Today we ... Read More

Career and Loss for People with ME

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Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from people’s lives. People with ME may struggle with their identity through the loss or great change in their careers. Below are stories of individuals who found their ... Read More
#MillionsMissing in Edinburgh

Q&A with #MillionsMissing UK Organisers

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On Thursday 18th April, #MEAction UK held a conference call with organisers of #MillionsMissing event past and present from across the UK. There are already events planned for 2019 in all 12 UK regions, with over 25 events in the UK Claire ... Read More
Calculator on top of graph paper with pen to the right

CBT and GET survey results published by Forward-ME Group

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In January 2019, a survey investigating the impact of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for people with ME, CFS or PVFS diagnoses in the UK was made available online. It was intended to provide up-to-date data ... Read More

GET and CBT are not safe for ME – summary of survey results

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#MEAction UK Lay Summary of the 2019 Forward ME Group CBT & GET Survey Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment ... Read More

A response to Dr. Mark Porter’s article about ME in The Times

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Last week, Dr. Mark Porter wrote an article in The Times under the headline, “Treatment for chronic fatigue syndrome is a complicated matter.” The following comments are intended as constructive criticism of that article, with the hope that they will ... Read More
Look@ME fundraiser #MEAction

Amazing Look@ME fundraiser in the UK!

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On 3rd, February 2019, Look@ME held a supper quiz in North London to raise awareness for myalgic encephalomyelitis (ME). Look@ME is a committee of family and friends coming together to raise awareness for ME. Over 200 people attended this special dinner and ... Read More

Announcing #MillionsMissing 2019! Join us!

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Listen to the article:   We are thrilled to announce #MillionsMissing 2019! This May, we will take to the streets - or demonstrate from our beds - to show the world we are here, we are the #MillionsMissing, we will continue to ... Read More

Proud Accessible Activism: The ME Debate Virtual Demonstration

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Throughout history, activism and campaigning have been a driving force for positive change across the world. From civil rights to LGBTQ rights and more. However much of this has been inaccessible to large swathes of the disability community. For the ME ... Read More

Historic Parliamentary Debate Shaped by People with ME

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Listen to the article:  On Thursday 24th January 2019 a historic debate took place. Over 40 MPs from across the political divide sat in the House of Commons to debate a motion on myalgic encephalomyelitis (ME), with 27 making impassioned contributions ... Read More
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