What is ME?

ME stands for Myalgic Encephalomyelitis. It is classified as a neurological disease by the World Health Organisation (WHO G93.3) and it affects all body systems. Science hasn't quite got to the bottom of it yet as research is slow due to being heavily under-funded globally. Although there is much evidence of abnormalities in various body systems, they have not figured out why it happens or how to treat or cure it - yet. As a result there is still no accepted diagnostic test and diagnosis is usually made through process of elimination.

A Flow chart of how ME CFS is diagnosed

How M.E. is diagnosed

What are the symptoms of M.E?

A list of symptoms of Myalgic Encephalomyelitis

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The illness affects the entire body. Symptoms include: generalised chronic pain, energy production and metabolism problems, impaired muscle function and recovery, cognitive dysfunction and memory loss, sensory processing issues, chemical intolerance as well as sensitivities to light, sound, smells, touch and movement, digestive issues, sleep disturbances including sleep reversal, insomnia and unrefreshing sleep, tremors, weakness, exhaustion upon any exertion, and a host of other fluctuating and unpredictable symptoms.

How does M.E affect patients?

Although some patients might still manage to hold on to a job, millions of patients around the world are housebound or bedridden due to this debilitating illness. Those who do manage to continue working spend all their time off resting in order to be well enough to maintain their job.

Even in this milder state, ME has a devastating impact on a patient's social life and affects every aspect of their life, the way they plan things and manage their responsibilities and relationships are all affected.

The main characteristic of ME is a severe worsening of all symptoms upon any physical, mental or emotional exertion, something called Post Exertional Neuroimmune Exhaustion, the onset of which can be delayed by 24-48 hours and can last anything from hours to weeks or even months. 

In the most severe cases patients are completely bedridden, in unthinkable pain, unable to speak, tolerate light or sound or be moved or touched. Highly sensitive to chemicals, various foods and medications. Some are paralysed and tube fed.

To read quotes submitted by patients with M.E, visit our galleries:

Science and Research

Despite the lack of government funding worldwide over the decades, there is some very exciting research happening and it's giving patients much hope for the future. Unfortunately it's a very slow process due to the fact that these scientists rely on donations and private funding. This is why raising awareness and fundraising is so important. Click here for the latest in M.E. news


Downloads: Information to share with doctors

Below are some great documents to help your health care provider better understand your condition.


Books About Myalgic Encephalomyelitis & Comorbid Conditions

These are great books for patients, carers and health care professionals to read.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining An Illness

Consensus Study Report by Institute Of Medicine

The Diagnosis And Treatment Of Chronic Fatigue Syndrome and Myalgic Encephalitis - It's Mitochondria, not hypochondria

By Dr Sarah Myhill

Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic

By Hillary Johnson

Coping With ME/CFS

By Laurie Glass

The Perrin Technique - How To Beat Chronic Fatigue Syndrome/ME

By Dr Raymond Perrin

Doctor With M.E. - My Journey With "Chronic Fatigue Syndrome"

By Dr Hng

Caring For ME, a Pocket Book Course for Carers

By Greg Crowshurst

Severe ME: Notes For Carers

By Greg Crowshurst

Understanding Severe ME - Essential Guide For Family & Friends

By C H Saunders

A Girl Behind Dark Glasses

By Jessica Taylor-Bearman

In A Few Words... Those of CFS/ME Patients
A fatigue that never goes away hides a true disease: chronic, disabling, little-known.

By CFS Associazione Italiana
(Italian CFS Association)

M.E, Myself And I - An Insiders View Of Myalgic Encephalomyelitis & Chronic Fatigue Syndrome

By K.C. Finn

An Adolescent's Guide To ME/CFS

By Vidhima Shetty

The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients

By Kelly Freeman

Documentary About M.E.

A documentary about Myalgic Encephalomyelitis and the decades-long battle people with M.E. have fought just to be believed, heard and helped:

Some Of My Articles On Life With M.E.

Feet in a bath tub, water moving. Title reads Shakes and Tremors with ME/CFS. Myalgic Encephalomyeitis causes visible body tremors.
Photo of hundreds of empty pairs of shoes in a town square representing th millions of ME/cfs patients missing from society. Title reads, How you can help the Millions Missing, Myalgic Encephalomyelitis awareness and advocacy,by Chronically Hopeful
A messy bed. Title reads: Imagine... a day in the life of M.E. Have you ever wondered what chronically ill people do all day?
Char lying on the bed, feeling ill. Title reads: Living with severe M.E. Who am I now? When it feels like you've lost your identity to chronic illness
Char pulling a funny face. Title reads: How to have M.E. successfully. A humorous look at life with Myalgic Encephalomyelitis.
In a dark room a hand is held up to block the light that is shining in. Title reads, Photophobia in ME and CFS. 20 Patients share their experience.
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