How it started

ME is a misunderatood and neglected disease that affects over 250,000 people in the UK alone. With the production of the moving movie Unrest by Jen Brea the spotlight has finally started to move.

Published on 25 Jul 2017

Watch now, worldwide: http://unrest.film/digital

Vimeo: https://vimeo.com/ondemand/unrest

#timeforunrest

Jennifer Brea is working on her PhD at Harvard and about to marry the love of her life when she’s struck down by a mysterious fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself to document her devastating symptoms. Searching for answers, Jennifer discovers a hidden world of millions confined to their homes and bedrooms by ME, commonly known as chronic fatigue syndrome. Together, Jen and her new husband, Omar, must find a way to build a life and fight for a cure.

Westminster Debate

On June 21st Carol Monaghan MP (Glasgow North West, Scottish National Party) leads the debate on Myalgic Encephalomyelitis treatment and research Learn more: https://www.meaction.net/2018/06/21/w...

Read the transcript: https://hansard.parliament.uk/Commons...

Time for change

I am now doing a 25 mile walk through Race At Your Pace over the month of July to raise the funds for a full time representative in the UK. They will continue our fight to raise awareness and funding. I can not dream of helping in any real way but have taken on this challenge to walk 25 miles over the month of July. My dream is to raise just £150, a drop in a bucket, but a drop that will help turn the tide for all of us and give us a voice.

My story

I have kept my illness a closely guarded secret until I started to take action this year. I went to Southampton and met up with many others in the same boat as me! I even had my 2 seconds of fame when i appeared on SW tv!

I have made some friends and started to talk about the everyday struggle that ME brings. My words were even used by an MP (not my own he wasnt there!) at the Westminster Debate!!

MP for Plymouth Luke Pollard

“A few days ago I mentioned on my Facebook page that I wanted to speak in the debate and I asked for stories from people in Plymouth. I have done that before for various debates and have always been struck by the level of honesty and directness that comes from people simply telling their story, not as a politician but as a person...

Jules wrote:

“Just getting up the stairs lays me out for hours. Having a shower leaves me laid out in a darkened room. I can’t work anymore (believe me not for want of trying!) I can’t do drama, Rock Choir or Zumba in fact just making a cup of tea leaves me as exhausted as Zumba used to! I lay alone at home. I live vicariously through FB. I still get out when I can but it will usually cost me days or weeks in bed. I am one of the ‘lucky’ ones. I am not totally bed bound. But I pay for this with my invisibility. I ‘look’ so well! No one can see my pain. I smile and say I am fine then go home to bed.”

The word “invisibility” is key here. People talk about it time and again in terms of how the condition affects their lives and relationships”

My words!! I was not invisible for two second!! My words were used on a day that will shape history for ME sufferers. Wow!!

Race at your pace