Myalgic encephalomyelitis (ME) is a potentially chronic illness experienced by approximately 200,000 people in the UK and 1 million in the USA. This makes the disease twice as prevalent as multiple sclerosis, systemic lupus and HIV infection.
A number of overviews, guidelines and reports have been written on the disease over the years. Since different names have been used to describe the disease (postviral fatigue syndrome, ME/CFS, chronic fatigue syndrome, chronic fatigue immune dysfunction syndrome, etc), these publications use a bewildering array of different terms and sometimes confusing acronyms. But don’t be put off by that – each in its own way emphasizes the seriousness of the illness and points up the need for action.
Some are more useful than others and none are ideal, but all contain at least some information that can be put to good use in certain contexts – to inform GPs, to support advocacy, to quote to journalists, to share with families and friends, etc.
The documents below are those that we have found most useful, for a variety of purposes, over the past decade.
• ME/CFS: Clinical Working Case Definition, Diagnostic and Treatment Protocols 2003 – “ME/CFS is a severe systemic, acquired illness that can be debilitating. It manifests symptoms predominantly based on neurological, immunological and endocrinological dysfunction” [This remains one of the best reviews of the science and symptomatic therapies available]
• ME/CFS: A Primer for Clinical Practitioners (IACFS/ME) 2014 – “In this primer, the collected wisdom of many experienced clinicians and clinician-scientists has been gathered…”
• Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners 2012 – “The International Consensus Primer was written to provide clinicians a one-stop, user-friendly reference for ME”
• Report to the Chief Medical Officer of England 2002 – “CFS/ME is a relatively common clinical condition, which can cause profound, often prolonged, illness and disability, and can have a very substantial impact on the individual and the family”
• The NICE Clinical Guideline 2007 – “The physical symptoms can be as disabling as multiple sclerosis…congestive heart failure and other chronic conditions”
• The Clinical and Scientific Basis of ME/CFS (Edited by Byron Hyde) 1992 . Free download (115 Mb) – The 725-page encyclopedia contributed to by “80 of the world’s leading ME/CFS authorities” [still worth reading after 20 years!]
Our own website also holds a wealth of useful information ranging from our database of scientific abstracts from the 1950s onwards to useful articles, conference speeches and essays.