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.
What are the symptoms of M.E?
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: To Share With Healthcare Providers
Below are some great documents to help your healthcare provider better understand your condition.
- International Consensus Primer for Medical Professionals (PDF)
- CPD Education Module for Healthcare Professionals (free course)
- The ME Association's Clinical And Research Guide (This booklet can be sent to your doctor free of charge, upon request, UK)
- Summary Of Scientific Evidence For M.E. by Dr Mark Guthridge (PDF)
- Diagnosing & Treating ME/CFS by The US ME/CFS Clinician Coalition (PDF)
- ME/CFS Treatment Recommendations By The ME/CFS Clinician Coalition (PDF)
- NASA Lean Test For Orthostatic Intolerance (PDF) For Patients | For Doctors
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.
Below is Jen Brea's TED Talk about Myalgic Encephalomyelitis and the decades-long battle people with M.E. have fought just to be believed, heard and helped. If you'd like a deeper dive into what ME/CFS is like, you can also find Jen's award-winning documentary "Unrest" on Netflix.