Policies and Documents

A. Illness Management Reports

November 2021

The ME Association review of the BACME statement and survey about CBT, GET, and the new NICE Clinical Guideline for ME/CFS. This was a survey of healthcare professionals involved in the delivery of care and support via ME/CFS specialist services.

The ME Association hopes that:

  • the new NICE clinical guideline and the recommendations it makes about the composition of secondary care referral services will result in all such services recruiting a physician to play a key role, preferably as clinical lead,
  • the guideline will prompt the commission of new ME/CFS specialist services so that people who need them will have local access to the very best clinical care and support,
  • existing ME/CFS specialist services will realign themselves to the recommendations in the new guideline and work together to provide an effective standard of personalised services across the UK,
  • BACME and the healthcare professionals involved in ME/CFS specialist services will work with us as a national charity and with local groups so that the patient voice can be heard and that we can help ensure the very best of clinical care and support for anyone who might be referred to them from primary care.

October 2020

The ME Association's response to BACME position statement on the management of ME/CFS.

“BACME issued a position statement on the management of ME/CFS earlier this week and the ME Association believes it is important that we comment upon it.

“While the ME Association is prepared to give a cautious welcome to what appears to be a significant change to BACME’s stance on both the causation and management of ME/CFS, we still have a number of concerns and questions…”

These include:

  • Reference to “best available clinically effective treatments” when none currently exist for ME/CFS.
  • “Graded activity strategies” – are they just another name for graded exercise therapy?
  • is BACME still recommending what might be termed ‘flexible graded exercise therapy’? If so, this ought to be made clear.
  • The lack of reference to Pacing which is a safe and effective management approach based on patient survey evidence and patient preference.
  • Reference to ‘rehabilitation’ in the context of ME/CFS – despite the included definition from the World Health Organisation.

“Finally, far more clarification is required about the way in which BACME now regards activity and energy management, along with the use of GET and CBT, and how this will translate into practical patient management in the NHS hospital-based referral services for people with ME/CFS.”

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.

January 2019

Parliamentary briefing document for debate on Myalgic Encephalomyelitis in House of Commons that occurred on January 24 2019.

“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of M.E., supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of M.E. and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting M.E. families to unjustified child protection procedures.”

These issues and concerns are described in more detail in the attached briefing document that has been prepared and supported by national charities – who are members of Forward ME which is chaired by the Countess of Mar – who represent both children and adults with the disease.

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

All research relating to ME/CFS can be located in the ME Association: Index of ME/CFS Published Research.

This extensive library of research is updated at the end of every month, and is correct to 02 November 2020. It is a free resource available to anyone.

The Index provides an A-Z of published research studies and selected key documents and articles, listed by subject matter, on myalgic encephalomyelitis, myalgic encephalopathy, and/or chronic fatigue syndrome (ME/CFS).

You can use it to easily locate and read any research in a particular area that you might be interested in, e.g. epidemiology, infection, neurology, post-exertional malaise etc.

You can also find the Research Index in the Research section of the website together with a list of Research Summaries from the ME Association that provide lay explanations of the more important and interesting work that has been published to date.

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

  • The 12th 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 the 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 or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.

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 ME Essential – quite simply the best M.E. magazine!

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