Policies and Documents

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ME Association Policies and Documents

A. Illness Management Reports

October 2017 – ME Association Review of SMILE trial: This randomised trial aimed to determine if young people with ME/CFS might benefit from standard medical care and the commercial Lightning Process. We produced a damning review of both the research and the promoted results, explaining why the trial failed to deliver what it promised.

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‘: This is a comprehensive and widely cited report, detailing the 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. The executive summary provides a handy overview. 294 pages in total.

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 in total.

B. Index of Published ME/CFS Research

The Index of Published ME/CFS Research is an A-Z index of the most important research studies (and selected key documents and articles), listed by subject matter, that have been published on ME/CFS.

It follows the subject headings that are used in the ME Association clinical and research guide, ‘An Exploration of the Key Clinical Issues’, written by Dr Charles Shepherd and Dr Abhijit Chaudhuri. A new 2018 edition of this guide has now been published and can be ordered from our website shop.

The Index of Published ME/CFS Research is updated at the end of each month when abstracts are made available on our website.

C. Stakeholder Survey

Nov 2015: The Member/Non-Member Satisfaction Survey Report reveals the results from a member and non-member survey that sought peoples views about the ME Association. We received a great number of comments from the 159 members (and 107 non-members) who took part and this feedback has helped us to see what we are doing well and where we need to do better. It continues to be used as part of our ongoing strategic review.

D. Governance and Operational Policy

ME Association Articles of Association

ME Association and Advocacy

ME Association Data Protection and Privacy Policy

ME Association Equal Opportunities Policy

ME Association Grievance procedure

ME Connect Confidentiality Policy

External Documents

ME Association submission to NICE guideline review re: scoping report – July 2018

2020Health Counting the Cost – Economic Cost of ME/CFS in the UK – September 2017

ME Association submission to NICE guideline review consultation – July 2017

Beyond ME/CFS: Redefining an illness – Institute of Medicine (America) – February 2015

ME Association 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





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