Summary: This document outlines the timeline and challenges surrounding the establishment of the Lothian ME-CFS pilot service, highlighting key events and concerns. Key points include: Initial Funding and Planning: In January 2011, NHS Lothian allocated a recurring investment of £25,000 for ME-CFS work. Meetings with stakeholders, including Action for ME, informed the development of the…
Summary: This document provides an overview of the Cross Party Group (CPG) on Myalgic Encephalomyelitis (ME) in Scotland during 2012, highlighting key meetings, events, and initiatives. Key points include: CPG Meetings: January 19, 2012: Focused on establishing six working groups addressing areas such as healthcare needs, GP education, and welfare reform. Feedback from the 25%…
Summary: This document provides an overview of the final meeting of the Cross Party Group (CPG) on Myalgic Encephalomyelitis (ME) in the Scottish Parliament, highlighting key events and challenges. Key points include: Final Meeting and Vote: On September 19, 2012, the CPG voted on whether to focus solely on ME (as defined by WHO ICD10…
Summary: This document, prepared by Helen Brownlie on behalf of the 25% ME Group, serves as a guide for lobbying Members of the Scottish Parliament (MSPs) on issues related to Myalgic Encephalomyelitis (ME). Key highlights include: Purpose: The guide lists MSPs who have shown interest or involvement in ME-related matters, including participation in parliamentary events,…
Summary: This document, dated September 25, 2012, addresses concerns regarding the Cross Party Group (CPG) on Myalgic Encephalomyelitis (ME) in Scotland. Key points include: Vote on Remit: A vote held on September 19, 2012, overwhelmingly supported focusing the CPG on neurological ME. However, within 24 hours, an email circulated proposing a second vote, raising questions…
Summary: This document explores the Scottish Parliament’s work on Myalgic Encephalomyelitis (ME) advocacy and policy, spanning petitions, parliamentary debates, and progress reports. Key points include: Petition by Cross Party Group: Lodged in October 2001, the petition called for a strategic needs review, accurate data collection on ME/CFS patients, and the establishment of a center of…
Summary: This document reflects on the closure of the Cross Party Group (CPG) on ME in the Scottish Parliament, highlighting key events and controversies. Key points include: Voting and Controversy: The CPG convenor initiated a vote on establishing a specialist ME clinic versus ME/CFS fatigue clinics. Tymes Trust was tasked with preparing voting options, which…
Summary: This document provides an overview of the Scottish Parliament’s engagement with Myalgic Encephalomyelitis (ME) up to July 2010, focusing on petitions, debates, and advocacy efforts. Key points include: Cross Party Group (CPG) Petition: Lodged in October 2001, the petition called for a strategic needs review, a center of excellence for ME/CFS, and improved GP…
Summary: This document outlines the efforts of the Cross Party Group (CPG) on Myalgic Encephalomyelitis (ME) in Scotland over a decade, focusing on healthcare improvements and advocacy. Key milestones include: 2000-2001: The CPG was established, and a petition with 17,721 signatures was presented to the Public Petitions Committee, urging a strategic review of ME/CFS needs,…
Summary: The document outlines the UK Government’s efforts to investigate genetic risk factors associated with Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME). Key points include: DecodeME Study: A £3.2 million research initiative funded by the National Institute for Health and Care Research and the Medical Research Council. This study aims to analyze…