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.
NICE Called for Evidence: Read #MEAction UK’s Response
The National Institute for Health and Care Excellence (NICE) are re-writing their guidelines on ME. As part of this they issued a call for evidence relating to three topics. #MEAction UK has now submitted our full response, collecting studies, surveys and data from multiple sources. [maxbutton id=”23″ url=”http://www.meaction.net/wp-content/uploads/2019/10/MEAction-submission-to-the-NICE-ME-CFS-call-for-evidence-consultation.pdf” text=”Read the full submission” ] #MEAction
Your experience of ME/CFS services – Take the survey by #MEAction UK
The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for evidence about 3 topics. #MEAction UK has put together the following survey to provide further evidence for the committee. [maxbutton id=”22″ url=”https://forms.gle/ZXEdp7W5nW4KBBcu8″ text=”Take the survey” ] The survey asks
NICE Call for Evidence on ME guidelines
The National Institute for Health and Care Excellence (NICE) have put out a call for evidence in relation to the ongoing update of their ME/CFS guidelines, due to be published in October 2020. This is an opportunity to ensure that all relevant information is held by the guideline development committee as they work to assess
NICE drag their feet on stopping the harm caused by GET and CBT
As part of our ongoing advocacy work, #MEAction UK has been campaigning for the National Institute for Clinical Excellence (NICE) to update the current ME guidelines. Updated ME/CFS guidelines are due to be published in October 2020. However in the meantime, the existing guidelines published in August 2007 that recommend Cognitive Behavioral Therapy (CBT) and
UK fundraiser seeking your ME stories
Ellie Rushton, Birmingham UK, is setting out on a rather unique fundraising adventure. For the next six months (September to February) she will be attempting to do 1000 reps of bodyweight exercises every, single, day. Ambitious indeed! But what does it have to do with ME? “I had never heard of ME until I met
Why people with ME need healthy allies
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
Greater London Authority Unrest screenings to raise awareness of ME
The Greater London Authority’s offices have held two Unrest screenings over the past few months to raise awareness of myalgic encephalomyelitis (ME). The screenings, held for staff, took place at Union Street and City Hall, and were part of ME Awareness Week and the #MillionsMissing campaign. Officers and staffers attended the two screenings, held in
Gigi Update: Lewisham Hospital Removes Gigi’s Pain Medication, Leaving Her in Rising Pain
An update on Gigi’s situation: Gigi’s family are launching an urgent appeal to find lawyers to bring their daughter, 17, home from Children’s Ward in Lewisham Hospital, London. Her family is desperate to bring her home, but the hospital has withdrawn Gigi’s pain medication, leaving her in steadily rising pain and making the move impossible.
A petition cloaked in the respectability of research
#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.
#MEAction Responds to Attacks on ME Community in The Guardian and Psychology Today
Listen to the article: Part 1: Part 2: In the past two weeks, The Guardian/The Observer and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the
UK Teenager with Severe ME Threatened with Forced Institutionalization
The ME community is rallying around 17-year-old Jehan “Gigi” who has been hospitalized with severe myalgic encephalomyelitis (ME) in the UK, and is now being threatened with being sectioned – forced institutionalization – against her will to a psychiatric hospital for her inability to eat, speak or walk due to the effects of severe ME
Aid Without Asking: How to Support Someone with ME
The love of my life battles ME/CFS. It’s a disease that my father has also struggled with since I was a boy, so it’s one I know well. I knew life wasn’t going to be simple when we met, but I dove in head-first anyway. I can’t say it’s been easy, but I can definitely