Policies and Documents

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A. Illness Management Reports

April 2019: Forward ME and Oxford Brookes University Report on CBT/GET Patient Survey

This survey was commissioned by Forward ME following discussions between the Chair and Vice-Chair of the NICE Guideline Development Group, Members of Parliament and the Chair of Forward-ME.

It was designed by a steering group of Forward ME members and an independent research unit within Oxford Brookes University, Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS), was engaged to undertake the survey, collate, analyse and report on the response.

The ME Association helped fund the cost of the report. See also: Blog Post.

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.

And follows the subject headings that are used in the ME Association Clinical and Research Guide, written by Dr Charles Shepherd and Dr Abhijit Chaudhuri. The 2019 edition of this guide has now been published and can be ordered from our website shop or is available as a Kindle e-Book on Amazon.

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

E. External Documents

The ME Association Clinical and Research Guide

Now available in hard-copy and Kindle e-Book formats!

  • The 11th edition of our clinical and research guide is a must-have for anyone who has been affected by – or has an interest in – ME/CFS/PVFS.
  • This authoritative publication represents the most comprehensive, evidence-based summary currently available and contains everything that health professionals and patients need to know about this devastating neurological disease.
  • It has been written by Dr Charles Shepherd, Hon. Medical Adviser to the ME Association and Dr Abhijit Chaudhuri, Consultant Neurologist, from the Essex Centre for Neurosciences.
  • To purchase your copy, visit our website shop, or click the image opposite. The guide is also available as a Kindle e-Book!

Free copy available for health professionals!
We are pleased to offer a free hard-copy guide to GPs, NHS consultants and other healthcare professionals in the UK. Please contact head office with name(s) and address details, or for more information and for any bulk orders.

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite to visit our JustGiving page for one-off donations or to establish a regular payment.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.

ME Association Registered Charity Number 801279

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