{"id":17184,"date":"2018-06-22T08:01:56","date_gmt":"2018-06-22T08:01:56","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=17184"},"modified":"2018-06-22T08:15:56","modified_gmt":"2018-06-22T08:15:56","slug":"westminster-hall-debate-could-be-a-turning-of-the-tide-for-me","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/westminster-hall-debate-could-be-a-turning-of-the-tide-for-me\/","title":{"rendered":"Westminster Hall debate could be a \u2018turning of the tide\u2019 for ME"},"content":{"rendered":"

#MEAction<\/strong> blog post, 21 June 2018: Westminster Hall debate could be a \u2018turning of the tide\u2019 for ME<\/a><\/h3>\n

\"\"Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall\u00a0debate\u00a0on treatment and research for ME.<\/p>\n

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 called for the suspension of the GET guideline, suggesting that not doing so risks litigation.<\/p>\n

\u201cNever have I felt so heard,\u201d said Sian Leary from Sheffield who has been housebound with ME for the past 5.5 years.<\/p>\n

\u201cToday is the day, here, in June 2018, where finally we started to take Myalgic Encephalomyelitis\u2026 seriously and we stopped condemning people who suffer from this ghastly debilitating disease,\u201d said MP\u00a0Stephen Pound, one of the 6 MPs who petitioned for the debate. \u201cToday is the day we said, \u201cYes we understand the pain people suffer . Yes we\u2019re going to do something about it. Yes we respect you. Yes we value you. And yes today we\u2019re going to start investing in diagnosis and \u00a0analysis and, god willing, cure\u201d.<\/p>\n

Carol Monaghan MP, who had led the petition for the debate, said that\u00a0Professor Sharpe, one of the authors of the PACE trial, emailed her this week to tell her that her behaviour is \u201cunbecoming of an MP\u201d.<\/p>\n

\u201cI say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is \u201cunbecoming\u201d, I stand guilty. [Hon. Members: \u201cHear, hear!\u201d] If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?\u201d<\/p>\n

MP Liz McInnes spoke about how GET had worsened Merryn Croft\u2019s condition.\u00a0Merryn Croft, 21, died from severe ME.<\/p>\n

Health Minister\u00a0Steve Brine, MP, welcomed the\u00a0NICE\u2019s decision to undertake a full review of ME guidelines, but avoided taking responsibility saying, \u201cIt would be inappropriate and wrong for Ministers to interfere with the process, but I feel sure that NICE will be listening to the debate and taking a keen interest in it.\u201d<\/p>\n

Read the Transcript\u00a0<\/a><\/p>\n

The debate was a result of 6 MPs\u00a0petitioning\u00a0for a full debate in the House of Commons with support from\u00a0MPs Carol Monaghan, Nicky Morgan, Stephen Pound, Alex Chalk, Ben Lake, Kerry Mccarthy. #MEAction\u00a0mobilized over 2,800 constituents\u00a0to urge\u00a0605 MPs\u00a0to attend the debate. (Thank you to everyone who reached out to their MPs and encouraged others to do the same!)<\/p>\n

The debate follows on the heels of 27 cities across the UK joining the global #MillionsMissing protest last month, and months of intense campaigning and actions from #MEAction UK and many charities participating in\u00a0Forward ME. This past February, we secured\u00a0a\u00a0debate\u00a0on the PACE trial. We also secured\u00a0signatures from 100 MPs for\u00a0the\u00a0Early Day Motion 1247\u00a0that called on the House of Commons to acknowledge the detrimental effects of the PACE trial.<\/p>\n

Thank the MPs who attended<\/strong><\/a><\/p>\n

Thanks to Ben Lake, MP for Ceredigion, for supporting Carol Monaghan and this debate. He said:<\/em><\/strong><\/p>\n

\"\"The hon. Member has made a very important point about the decades of underinvestment.\u00a0 A friend of mine, John Peters, suffers from ME and was first struck down in the 1980s.\u00a0 The impact on his life has been total.\u00a0 He acknowledges that he would not have been able to do everything in life; he knows that there would have been ups and downs.\u00a0 But as he quite painfully put it to me, he has not had the\u00a0\u200bchance to fail.\u00a0 His is a life unlived.\u00a0 So, given those decades of underinvestment, it is so important that we now change things for the future.<\/em><\/p>\n

Watch the full debate<\/a><\/p>\n

 <\/p>\n

#MEAction is asking for\u00a0your help to keep the momentum going.\u00a0\u00a0Donate today\u00a0to support their\u00a0crowdfunding campaign<\/a>\u00a0and help them hire their first, on the ground UK coordinator.<\/p>\n","protected":false},"excerpt":{"rendered":"

#MEAction blog post, 21 June 2018: Westminster Hall debate could be a \u2018turning of the tide\u2019 for ME Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall\u00a0debate\u00a0on treatment and research for … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[4498,4218,2156,4473,4472],"class_list":["post-17184","post","type-post","status-publish","format-standard","hentry","category-news","tag-ben-lake-mp","tag-carol-monaghan-mp","tag-meaction","tag-parliamentary-debate","tag-westminster-hall"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-4ta","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/17184","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=17184"}],"version-history":[{"count":5,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/17184\/revisions"}],"predecessor-version":[{"id":17192,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/17184\/revisions\/17192"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=17184"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=17184"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=17184"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}