The National Institute for Health and Care Excellence (NICE) is in the process of updating its guideline for Myalgic Encephalomyelitis by October 2020. #MEAction UK has issued a response to the second draft scope for the ME/CFS Guideline. The scope is a document which will provide the framework for the new guidelines; providing feedback about
Parliament Plays NICE #MEAction UK was thrilled to watch the longest ever UK parliamentary debate about ME on 21st June, after working so hard alongside so many others to make it happen. The three hour debate in Westminster Hall about treatment and research reflected a seismic shift in political understanding of ME. It was an
This month we want to honor the work of three women with #MEAction Scotland – Emma Shorter, Kim Gurav and Janet Sylvester – who have done an incredible job advocating for people with myalgic encephalomyelitis. The partnership began last January when Kim and Janet wanted to organise a screening of Unrest, which – long story short!
Hi everyone, I just wanted to take a moment to comment on some of the confusion and concern of these last few weeks and offer some steps forward to help clarify how #MEAction works, what our core value are, and how we plan to make concrete our policy positions going forward. We are not a
Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME. MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this treatment. MP Ed Davey
UK charity Invest in ME has written a briefing for the 21 June Westminster Hall debate that calls for £20 million in funding for biomedical research for five years. The briefing also provides an excellent summary of the disease and the challenges patients face accessing appropriate care. [maxbutton id=”16″ url=”http://investinme.org/Documents/Fact%20Sheets/Status%20of%20Research,%20Treatment%20and%20Perception%20of%20Myalgic%20Encephalomyelitis%202018.pdf” text=”Read the briefing” ]
A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m (You’ll be able to watch the live stream here). We want to encourage as many of our MPs as possible to attend and use this as an opportunity to raise the visibility of ME! Here’s
Next Thursday, Parliament will hold a 3-hour Westminster Hall debate on Myalgic Encephalomyelitis treatment and research in a monumental victory for the ME community. In preparation for the debate, #MEAction UK volunteers prepared a parliamentary briefing along with three other charities – ME Association, Action for M.E., and the ME Trust. (Learn more about how
A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m. We need to encourage as many of our MPs as possible to attend. Contacting your MP has never been easier with this new tool. Simply enter your postcode below to get started. Urge your MP
#MEAction Scotland appeared before the Scottish Parliament Petitions Committee on June 7th to give evidence on its petition to review treatment of ME patients in Scotland. Watch the hearing: Not all petitioners are called before the Parliament’s Petitions Committee, so the fact that #MEAction Scotland has been summoned is very encouraging. The petition has received 7,000 signatures, and
