United Kingdom News
Never miss a beat! Subscribe to our newsletter and select “Daily Digest” to get a summary of the day’s news & actions delivered to your inbox.
Community Roundup – End-Of-Year, 2018
As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austria Austrian broadcast station @ATV aired a
Volunteer of the Month – A Source of Inspiration and Wisdom
Jenny Horner is another stalwart advocate in the myalgic encephalomyelitis (ME) community who inspires us to dig deeper and reach higher. She first got involved with #MEAction UK in an effort to protect children from the effects of being pushed to exercise, which has shown to cause harm in people with ME. Most recently, she
Join our #MEAction UK & #MEAction Scotland social media teams!
#MEAction UK and #MEAction Scotland are recruiting new volunteers to join our social media teams. We are looking for volunteers to create impactful content across our Twitter and Facebook pages, as well as moderators to enable our Facebook groups to be effective working spaces focussed on active campaigning and mobilising from the ground up. Communicating
Post-interferon fatigue study: a mixed bag
A study scheduled for our December research roundup entered the limelight yesterday due to an SMC campaign in the UK. The study that has everyone talking is a study at King’s College London called Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of Chronic Fatigue Syndrome and features some familiar faces, including Chalder. The
All I want for Christmas is #ScienceNotStigma
This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and Care Excellence (NICE, the public body responsible for UK clinical guidelines) have just dismissed legitimate concerns of thousands of people with ME, and their friends, family and allies who emailed them. Staff
Community Roundup – Telling Our Story to the World
Across the globe, we are pursuing creative projects across all mediums to tell the world about myalgic encephalomyelitis (ME). In our fall roundup, you’ll be inspired reading about the work and accomplishments of some of our community heroes. Support the #MEAction community by donating to our #GivingTuesday campaign this Tuesday, Nov. 27 where Facebook will match your
Advocacy Round-up – A Season of Protest and Petition
The #MEAction community has dug in deep this fall to undertake the incredibly important work – and heavy lifting – of ensuring that our health agencies create guidelines that will improve the lives of people with ME. We are holding our government officials accountable for their decisions that affect our daily lives. We continue to
Sept & Oct — Research Roundup
The end of September was a whirlwind! Between the CDC’s website work, the CDC’s awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn’t much time to devote to breaking down the science. If you’d like to see a quick run-down of what’s been going on lately
NICE Appoints Committee Rife with Bias – Take Action!
What’s been happening at NICE? The National Institute of Clinical Excellence (NICE) is re-writing its guidelines on ME/CFS. Health professionals in the UK base their care of people with ME on these guidelines, and they are influential globally. Since their inception, patients and their families have found the current guidelines detrimental to care. Last week,
UK: MPs fight for a crucial parliamentary debate on ME
Carol Monaghan MP presented her application for a debate on ME to the Backbench Business Committee on Tuesday October 30th supported by Nicky Morgan MP, Steve Pound MP and Kelvin Hopkins MP. The application was also supported by over 30 other MPs from across the political divide at a crucial time for people with ME
The final NICE scope is here: read our analysis
N.b. We wrote this article prior to more of the appointments for the guideline development committee being made. Some of these appointments are inappropriate and we are working on a response to that. There are still some committee vacancies that have yet to be filled. We’ll update everyone as soon as possible. In the meantime
#MEAction keeps up the political heat of ME in the UK Parliament
A productive and extremely positive meeting on the current developments on ME in the UK took place on Monday, 22nd October in the UK Parliament. Carol Monaghan, MP, and David Tuller, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, met at