Policies and Documents
A. Reports and Statements
The ME Association's position on ME/CFS is aligned with that of the National Institute for Health and Care Excellence (NICE) and the 2021 NICE Guideline on ME/CFS (NG206), the Department of Health and Social Care (DHSC) and the work that has gone into the 2024 Delivery Plan, and with what we have learned from the patient community in the last 43 years…
ME/CFS has been reported in children as young as 5, and there appears to be a peak of onset around 13 to 15 years of age. This 6-page chapter has been taken from the 2022 Clinical & Research Guide and we review what is known about ME/CFS in young people and consider the research evidence.
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.
“The ME Association is not and never has been against exercise per se. What we have consistently been saying since publication of the current NICE guideline (2007) and the PACE Trial (2011), is that use of regimented and inflexible graded exercise therapy as a management approach for people with ME/CFS is wrong, ineffective, and can cause harm…”
“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…”
- 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.”
The Hon. Paediatric Adviser to the ME Association published an 8-page review about the presentation of severe ME/CFS in children. He considers the approach that should be adopted by doctors, and what can be done to help provide appropriate support and care.
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.
Parliamentary briefing document for debate on Myalgic Encephalomyelitis in House of Commons that occurred on 24 January 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.
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.
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.
This 61-page booklet was compiled by international experts including Dr Nigel Speight, Hon. Paediatric Adviser to the ME Association. It provides the information necessary to understand, diagnose and manage the symptoms of M.E. in children and young people.
Details the ME Association position on the controversial graded exercise and cognitive behavioural therapies and explains why we support the activity management approach known simply as Pacing.
This briefing sets out local authorities’ key responsibilities under the Care Act in relation to people with long-term, fluctuating conditions with care and support needs.
What people with ME/CFS and their carers want from the UK’s health and social services. 4,217 people took part – making this the largest ever survey of patient and carer evidence on issues relating to ME/CFS management.
B. Published Research Index
All research relating to ME/CFS and Long Covid can be found in the ME Association: Published Research Index.
This extensive library is updated weekly. It is a free online 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) and Long Covid.
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. or can search by author or study title.
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 Equal Opportunities Statement
- ME Association Grievance Procedures
- ME Connect Confidentiality Policy
E. External Documents
- NICE Clinical Guideline ME/CFS – NG206 – Full Guideline – October 2021
- CII Report Energy Limiting Chronic Illness (ELCI), Social inclusion, Employment and Social Security – 27.04.21
- NICE Draft Clinical Guideline ME/CFS – 10 November 2020
- 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
- ME/CFS Diagnosis and Management in Young People: A Primer – June 2017
- The London Criteria for M.E. 2014 – Archived – October 2016
- UberResearch ME/CFS Research Funding Report – 2016
- 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
- Prof. Malcolm Harrington, An Independent Review of the Work Capability Assessment – Nov 2010
- Scottish Good Practice Statement on ME-CFS, 2010
- Scottish Public Health Network: Health-care Needs Assessment of Services for People with ME/CFS – November 2010
- Report of the APPG on ME Inquiry into NHS Service Provision for ME/CFS – March 2010
- MEA submission to the APPG on ME Inquiry into NHS Services – June 2009
- NICE Clinical Guideline ME/CFS – CG53 – 22 August 2007
- Parliamentary Inquiry into the status of CFS/ME and research into causes and treatments (‘The Gibson Inquiry') – November 2006
- 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