Important Links

Clinical Descriptions – Data, Guidelines & Classifications

Nice Clinic Guidelines – Chronic fatigue syndrome / Myalgic encephalomyelitis (CG53)

WHO International Classification of Diseases (ICD-10) – G93.3

Centers for Disease Control and Prevention – 1994 “Fukuda” Case Definition

Oxford 1991 Criteria – A report–chronic fatigue syndrome: guidelines for research.

Canadian 2003 Criteria – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols

London Criteria – London Criteria for ME

2011 ‘international consensus criteria’ for ME – Myalgic encephalomyelitis: International Consensus Criteria

Australian Guidelines 2004 – Management Guidelines for General Practitioners.

NOTE: The WHO classifies disease rather than defines disease.  ME definitions: (London, Ramsay, International), CFS definitions: (Australian, Fukuda, Oxford, NICE – which UK doctors are now encouraged to use) and ME/CFS definitions: (Canadian)

Information, Research & Expert Blogs

Health RisingDedicated to providing timely, accurate information to people with Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia.

Simmaron Research – A nonprofit organization dedicated to advancing scientific research, potentially leading to the discovery of diagnostic markers and effective treatments that will ultimately improve the quality of life for people suffering from CFS/ME and related neuroimmune disorders.

Phoenix Rising – Provides people with chronic fatigue syndrome (ME/CFS) information to support their health and wellness and online programs to enhance their health and well-being. Phoenix Rising publishes articles, a blog and a newsletter, maintains the largest ME/CFS Forum and contains  the largest database of articles and posts on ME/CFS on the web.

M.E. Research UK – Founded in 2000, and its principal aim is to commission and fund scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS).

Invest In M.E. – A volunteer charity set up to fund biomedical research, education and lobbying.  Invest in ME aims to collaborate and coordinate events and activities in these areas in order to provide focus and funding to allow biomedical research to be carried out.

FM / CFS / ME Resources – FM/CFS/ME RESOURCES was created in 1997 to provide research, support and education for people affected by FM and CFS/ME. You’ll also find resources to aid in finding doctors, disability attorneys and support groups worldwide.  Run by patients and concerned citizens.

ME-gids – ME/CFS information for dutch speakers.

Dr. Sarah Myhill – UK doctor providing advice and tests.

Prominent doctors and specialists

Dr. Derek Enlander – New York ME/CFS Centre, New York, USA.

Dr. Sarah Myhill – Knighton, Wales, UK.

Dr. Charles Lapp – Hunter-Hopkins Centre, NC, USA.

Dr. Dan Peterson – Incline Village, Nevada, USA.

Dr. Nancy Klimas – Institute For Neuroimmune Medicine, Miami, FL, USA.

Dr. Leonard Jason – DePaul University, Chicago, IL, USA.

Dr. Paul Cheny – Asheville, NC, USA.

Dr. Lucinda Bateman – Salt Lake City, Utah, USA.

Dr. Kenny L De Meirleir Vrije Universiteit, Brussels, Belgium.

Dr. Byron Hyde – Nightingale Research Foundation, Ontario, Canada.

Dr. Nigel Speight – Paediatric Adviser to the MEA and TYMES Trust, Durham, UK.

Dr. Malcom Hooper – Emeritus professor of medicinal chemistry at the University of Sunderland, UK.

Dr. Rosumund Vallings – Howick health and medical centre, Auckland, New Zealand.

Dr John Chia – Enterovirus Foundation, San Fransisco, CA, USA.

Dr. Anthony Komaroff – Professor of Medicine at Harvard Medical School, Boston, MA, USA.

Dr. Jose Montoya – Division of Infectious Diseases and Geographic Medicine Stanford University School of Medicine, USA.

Dr. Elizabeth Unger – National Center for Emerging and Zoonotic Infectious Disease Centers for Disease Control and Prevention, USA.

Patient Support Organisations / Charities

This information can be found here

Personal recommendations:

25% ME Group – A member group that exists to support all who have the severe form of M.E. and those who care for them. This includes people who are housebound, bedbound and wheelchair users.

Tymes Trust – The longest established national UK service for children and young people with ME and their families. It is a respected national charity whose entire professional team give their time free of charge. They work constantly with doctors, teachers and other specialists, and played a major role in producing the children’s section of the Dept of Health Report on CFS/ME (2002).

ME/CFS Australia (Victoria) – A not-for-profit public benevolent institution dedicated to providing information, support and advocacy for people who have ME/CFS and their families, friends, carers; GPs and others health practitioners; educators and school staff; and the general community. ME/CFS Australia (Victoria) receives very little funding and relies upon membership contributions and donations to remain operating.

Patient Tools

Patients Like Me – A patient network that improves lives and a real-time research platform that advances medicine. On PatientsLikeMe’s network, people connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care.

ME Diary – ME Diary Smart Phone App provides a versatile tool for those affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to help manage activity, exhaustion and symptoms, including personalized symptoms.

ActiveME – NHS approved pacing app.  Intended to help people with chronic fatigue syndrome (CFS) track and monitor their daily activity levels.

My Pain Diary: Chronic pain management – Pain diary for people with allergies, back pain, chronic fatigue syndrome (CFS), depression, fibromyalgia, headaches, or migraine.  Recommended by the World Pain Foundation (WPF).

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