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

I​n 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

​Some Of My Articles On Life With M.E.

A bed and bedside table with a lamp on it. Title reads: You might be an M.E. sufferer if... part 1, guest post by David A Graham.
ME Awareness Hour
Title reads, M.E. Awareness Pictures, What it's like living with Myalgic Encephalomyelitis.
Man in a wheelchair with his hand on the wheel. Title reads: Not all disabilities are visible. International day of people with disabilities.
A selection of succulents, Title reads: M.E. Community News, News headlines and blog highlights from week 42 of 2019
Title reads Join The MEcfs Community, Social group for ME & CFS patients and carers. Photo of blue forget-me-notspin by Chronically Hopeful
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