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Browse Actions: United Kingdom

All I want for Christmas is #ScienceNotStigma

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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 ...

NICE Appoints Committee Rife with Bias – Take Action!

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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 ...

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

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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 ...

Two things to do ahead of Thursday’s Parliament debate

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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 ...

UK: Urge your MP to attend the 21st June debate on ME

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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 ...

Scottish Action – Urge your MSP to Support Petition for ME

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by Kim Gurav and Susan Cole #MEAction Scotland volunteers have been called before the Scottish Parliament’s Petitions Committee on Thursday, 7th June to give evidence on their petition to review treatment of ME patients in Scotland. The petition has received 7,000 signatures, and calls on the Scottish Government to invest in ...

UK Call to Action: Ask Your MP To Sign EDM 1247!

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  If you are in the UK, please email your MP asking them to sign Early Day Motion 1247. What is an EDM? Early day motions (EDMs) are motions submitted for debate in the House of Commons for which no day has been fixed. As there is no specific time allocated to EDMs very ...

Urge your MP to sign EDM 271!

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We need your help for parliament to recognise the strength of feeling about NICE guideline review ...

Troubled by NICE guidelines? Three easy ways you can help

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When you go to the doctor, you expect treatment to help, not harm you. But the NICE (NHS) guidelines for ME/CFS only recommend two main therapies for ME: Graded Exercise Therapy (GET - which asks you to gradually increase your exercise each week, ignoring any worsening symptoms) and Cognitive Behavioural Therapy ...

Write to Your MP in 5 Minutes about the ME/CFS NICE Guidelines

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  The NHS' NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy and Cognitive Behavioural Therapy. We've just heard that NICE, despite being due for a revision this year, are intending not to revise the guidelines after all. This is worrying for all patients ...