Policies and Documents

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In this section we are building up a collection of general documents for website visitors to download.

ME Association Documents

Illness Management Reports

June 2017: ME Association Review of GETSET: This randomised controlled trial aimed to demonstrate GET delivered remotely was able to improve physical function for people with ME/CFS. We explain why it didn’t and why other aspects of this trial – and the therapy – should be treated with caution.

October 2015: ‘No decisions about me, without me‘: Results of the 2012 ME Association Patient Survey Examining Acceptability, Efficacy and Safety of CBT, GET, and Pacing, as Interventions used as Management Strategies for ME/CFS: 278 pages

May 2010: ‘Managing my ME: What people with ME/CFS and their carers want from the UK’s health and social services’: Results of the ME Association’s major survey of illness management requirements: 32 pages

Governance and Operational Policy

Advocacy and the ME Association

Confidentiality policy – ME Connect

Grievance procedure

The MEA and the Data Protection Act 1998

Equal Opportunities Policy

Member/Non-Member Satisfaction Survey

2015 Member/Non-Member Satisfaction Survey Report


External Documents

MEA submission to NICE guideline review consultation – July 2017

MEA submission to the House of Commons Health Committee on NHS Services for people with ME/CFS, 2014

Evidence-based Review of the Work Capability Assessment, 2013

Forward ME Group – ESA Work Capability Assessment review – Making it work for fluctuating conditions – April 2011

Scottish Good Practice Statement on ME-CFS, 2010

Report of the APPG on ME Inquiry into NHS Service Provision for ME/CFS (‘The Gibson Inquiry’,March, 2010)

MEA submission to ‘The Gibson Inquiry’ into NHS Services (June 2009)

Report to the Chief Medical Officer of an Independent Working Group on CFS/ME – 2002

Report to the Chief Medical Officer of an Independent Working Group on CFS/ME – Annex 6 and 7 Management of CFS/ME – 2002