On Sunday 29th of September, my husband, David, and our daughter, Rosslyn, are taking part in the Great Scottish Run 10K to raise money for #MEAction UK. As friends of #MEAction volunteer Emma Shorter and her family, David and Rosslyn have been aware of ME for some time but they’ve only relatively recently gained a
#MEAction UK has written a letter with regards to a survey that states it is to protect specialist CFS/ME services in the UK. We do not recommend people fill in this survey. It is written in such a way that it could be misused to support the existing treatment paradigm that harms people with ME.
Volunteers are at the heart of everything #MEAction Scotland does. We are always looking for more people to help make a difference and support our work in Scotland. Currently, #MEAction Scotland is run by a small group of volunteers, most of whom have ME, with support from the UK coordinator. If you are interested in
I am delighted to be part of the series in which you are getting to know the #MEAction staff! My name is Espe and I am #MEAction’s UK Coordinator. I am so honoured to be a part of the staff at #MEAction. I came to #MEAction via Unrest, as I was working on the impact
#MillionsMissing Glasgow on 12 May, 2019, was a huge success, and took place in glorious sunshine which is fairly unusual for this Scottish city! A crowd of around 400, many of whom had travelled from across Scotland, heard people with myalgic encephalomyelitis (ME) speak about their experience of the illness. There was music from local
#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
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 want to share more of your stories. While not all of these stories fit into
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 from Southampton, Janet from Edinburgh, Carolyn from Sheffield and Denise from London were
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 on the impact these therapies have had on people who have been offered or received
Listen to the recording: #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 in the UK. A majority of people with ME
