Your illness may be called Chronic Fatigue Syndrome [CFS], Myalgic Encephalomyelitis [ME], Post Viral Fatigue Syndrome
[PVFS], Fibromyalgia Syndrome [FMS]. Any of these diagnoses may have been given to you by your doctor.
CFS/ME is the term which is usually used in recent years. It was first suggested by the Chief Medical Officer [CMO] of Health in his 2002 CFS/ME Working Group report to reflect the fact that the illness is usually known by the patients and patient groups as ME, but by the medical establishment as CFS (Chronic Fatigue Syndrome), although the report states: "the Working Group is conscious that some patients, especially those who are severely affected, consider the use of the name CFS to be unrepresentative of their illness experience."
M.E is a potentially chronic and debilitating illness, which is classified by the World Health Organisation as a neurological disorder in the International Classification of Diseases (ICD) 10 at G93.3.
Definitions and symptoms
Solihull & South Birmingham ME Support Group believe the Canadian Clinical Case Definition and Guidelines to be one of the best descriptions of ME - an overview of the Canadian Clinical Case Definition and Guidelines can be seen here.
The full version of the Canadian Clinical Case Definition and Guidelines can be viewed here
The International Consensus Primer for Medical Practitioners - published in September 2012
The ICP was written to provide clinicians a one-stop, user-friendly reference for ME. It includes a concise summary of
current pathophysiological findings upon which the ICC are based. A comprehensive clinical assessment and diagnostic
worksheet enables clear and consistent diagnosis of adult and paediatric patients world-wide. The treatment and
management guidelines offer a blueprint for a personalized, holistic approach to patient care, and include nonpharmaceutical
and pharmaceutical suggestions. Patient self-help strategies provide recommendations for energyconservation, diet, and more. Educational considerations for children are included.
The International Consensus Criteria- published in July 2011
An International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. The Canadian Consensus Criteria were used as a starting point, but the six-month waiting period before diagnosis is no longer required. (Our thanks to Worcestershire ME Support Group)
Symptom lists compiled by Dr Charles Shepherd, Dr Anne MacIntyre and Dr David Bell can be found here (courtesy of
Worcestershire ME Support Group)
Read a Disability scale here.
For Children and Young People go to TYMES Trust
And see TYMES Trust's - A Good Practice Guide to Education for Children with ME for GPs, Schools and Families
What do the patients think?
ME from a patient's point of view...
Carol Schmid examines what it is about the nature of ME/CFS that makes it likely to generate scepticism.
results of recent patient surveys on ME:
AfME 2014 : "ME, Time to Deliver"
The ME Association 2010: for a quick look read the - MEA survey summary
Action for ME 2008
The 25% ME Group 2005 (submission to the Gibson Inquiry which includes a survey of the severely affected)
Welfare and Benefits
For the purposes of assessing people with ME/CFS for benefits & welfare the Department of Work and Pensions http://www.dwp.gov.uk/published the DWP MEDICAL GUIDANCE – version 10, in May 2007. This guidance is primarily intended for the Decision Makers at the Disability and Benefits Centres
Flu Jabs and people with ME information from Dr Charles Shepherd medical advisor for the ME Association
Information leaflets List
these leaflets (which include 'Pacing' and 'Energy Management' by Dr Charles Shepherd of the MEA can be obtained by post from our group - contact details
"Advice to a new patient"- from the CFIDS Association of America website
Pacing by Ellen Goudsmit (courtesy of the Welsh Association of ME & CFS Support)
SSB leaflet for Carers, Family and Friends of People with ME
Scottish Govt Good Practice Statement on ME/CFS 2011
BBC disability site "Ouch" - http://www.bbc.co.uk/blogs/ouch/
Benefits and Work website - useful information and guidance on benefits and how to claim them
National Talking Newspapers & Magazines
Calibre Audio Library - Tel: 01296 43 23 39 http://www.calibre.org.uk/
M.E. Support is a friendly, informal ‘online community’.The site covers many aspects of M.E.
(also known as PVFS/ CFS / CFIDS) & other chronic fatiguing illnesses.