Search Results for: PACE – Page 29

Denmark has some recommendations for ME… and they're pretty awful

Article written by Rebecca Hansen, Chairman of the Danish ME Association  The Danish Health Authority (SST) released their new treatment recommendations for Myalgic Encephalomyelitis (ME) patients on June 18 as part of a guideline called “Physical Training as Treatment.” The chapter on ME is nothing short of medical abuse. It defines ME as fatigue and states that

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What next for the NICE guidelines?

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

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Volunteer of the Month: a Scottish Trio

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!

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Next steps: a letter to our community

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

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Mother Shares Heartbreaking Testimony about Sons with Severe ME

This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take appropriate action to address this health crisis. Her two sons have suffered from severe Myalgic Encephalomyelitis for more than a decade. The photo was taken of her sons one month and one day before ME devastated

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Westminster Hall debate could be a 'turning of the tide' for ME

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

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Two things to do ahead of Thursday’s Parliament debate

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

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UK MPS Secure Westminster Hall Debate on ME

Mark your calendars! 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. The fight for a larger debate on ME has had cross party support with Carol Monaghan MP securing the debate, along with the support of five other MPs. #MEAction UK and

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