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…
Summary: The report highlights advocacy efforts and community engagement for ME (Myalgic Encephalomyelitis) in Wales during 2012. Key points include: Political Advocacy: Julie Morgan, Assembly Member for North Cardiff, attended a support group meeting in November 2012. She listened to patients’ concerns about the lack of services, understanding, and challenges in accessing benefits. She invited…
Summary: The report sheds light on the struggles faced by over 7,000 ME patients in Northern Ireland as of December 2012. Key points include: Healthcare Services: NHS services for ME patients were described as poor and worsening. Specialist care was limited, with key personnel retiring or leaving the field, and remaining consultants focusing on diagnosis…
Document Summery: The “Health Care Needs Assessment for People Living with ME-CFS” provides recommendations to improve care and services for ME-CFS patients in Scotland. Key points include: Defining ME and CFS: The document recommends adopting the Canadian Guideline for defining ME and the NICE guideline for CFS to ensure accurate diagnosis and better patient care….