Category: United Kingdom

Members of the All Party Parliamentary Group

Next Steps for the APPG on ME in the UK

#MEAction and the ME Association are both delighted that Carol Monaghan (MP for Glasgow North-West) has re-established a new All-Party Parliamentary Group (APPG) on ME. This is a parliamentary initiative for which the ME Association will be providing secretariat support. The purpose of the APPG on ME is to seek to improve health, social care, education

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APPG on ME Sample Email UK

Another No from NICE – Take ME Seriously

As publication of new ME guidelines are delayed, NICE once again refuse to take action to mitigate the harmful recommendations that still stand in the existing guideline. Join us as we send them a giant card and tweet them so that they see the damage their guidelines have caused. Read more below and take action.

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Parliament Sqaure road sign

New APPG on ME for the UK – Meeting

Following the success of the last parliamentary debates on myalgic encephalomyelitis (ME), Carol Monaghan MP is reviving the All-Party Parliamentary Group (APPG) on ME. After well attended Westminster Hall and House of Commons debates with cross-party support, Carol Monaghan MP has decided that it is time to re-establish this APPG.  The first meeting will be

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How did your local ME service perform?

Earlier this year #MEAction UK wrote, distributed and analysed a survey in response to The National Institute for Health and Care Excellence (NICE) releasing a call for evidence as they rewrite the ME guideline. Our full report from that survey found that ME/CFS services in the UK are not fit for purpose. Results identified that

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A Trial of ME – Elizabeth’s Story

This is me, my story, I am one of the millions missing. I may not look ill to you, but if you see me, it will be because I am having a ‘good’ day because I am well enough to be able to get dressed and leave the house. The rest of the time I

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UK General Election Guide Now Available

The UK is set to go to the polls on 12 December 2019. #MEAction UK has prepared a guide ahead of the General Election with information on how to register for voting, different ways of voting (postal, proxy, etc), information about candidates and tips on raising awareness about myalgic encephalomyelitis (ME) with candidates. Make your

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ME Services in the UK Not Fit for Purpose

A recent survey conducted by #MEAction UK found that UK specialist myalgic encephalomyelitis (ME) services are not fit for purpose. Areas investigated included: Management strategies Experience attending a clinic Cognitive behavioural therapy (CBT) Activity management [maxbutton id=”23″ url=”http://www.meaction.net/wp-content/uploads/2019/10/Your-experience-of-ME-services-Survey-report-by-MEAction-UK.pdf” text=”Read the survey report here” ]   The survey was conducted to provide evidence to the National

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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

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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

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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

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