Myalgic Encephalomyelitis is complex, chronic neuroinflammatory illness, which impacts systems throughout the body.
Myalgia = Muscle Pain
Encephalo = Brain
Myelo = Spinal Cord
Known as ME in the British Commonwealth countries, the illness has been commonly referred to as Chronic Fatigue Syndrome (CFS), or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) in the United States.
A debilitating chronic illness, ME can strike suddenly or slowly creep up on adults and children, male and female, often lingering for years. It can leave its victims unable to work or take care of themselves or their families. Relentless and relapsing, ME has a devastating impact on the lives of affected individuals. 407,789 Canadians were identified with chronic fatigue syndrome in the 2014 Canadian Community Health Survey.
The cause of ME is not yet known. There could be a number of factors which contribute to the onset of the illness, but evidence suggests an immune system dysfunction, possibly triggered by viral infection(s).
The symptoms of ME are similar to the symptoms of several other diseases, including MS. Therefore, it is essential to have a thorough medical examination to rule out other conditions.
ME can affect every organ and function of the body. Here are some of the major symptoms:
- The major hallmark symptom of ME is the onset of severe, disabling fatigue that is new, persistent or recurrent, and is not alleviated by rest. In ME sufferers, the fatigue is a profound physiological exhaustion which, along with other symptoms, worsens as a result of increased activity. This is called ‘Post Exertion Malaise (PEM)’ and is also known as ‘Post Exertion Neuro-Immune Exhaustion (PENE)’. Patients often refer to a ‘crash’ where they may become immobilized, even bedridden, for extended periods before the fatigue and other symptoms are even partially alleviated.
- Changes in sleeping patterns. People with ME often complain of unrefreshing sleep, and experience disturbances in both quality and quantity of their sleep. Sleep apnea is also often present.
- ME often causes cognitive function impairments such as short term memory disturbance, confusion and difficulty with thinking and concentration. The abilities to read, write, perform mathematical calculations, and clearly communicate can be affected.
- Pain is often experienced in the muscles or joints and/or in the onset of headaches of a new type, pattern or severity.
In addition to these major symptoms, people with ME experience, in varying degrees and combinations, a range of other symptoms related to irregularities in the functioning of the neurological, immune and endocrine systems. These can include:
- problems with balance
- orthostatic hypotension
- hormone imbalances
- chills and/or sweats
- low grade fever or abnormal body temperature
- heart rhythm irregularities
- increased sensitivity to noise, light, odours
- increased chemical sensitivity
- gastrointestinal problems such as diarrhea, constipation, irritable bowel symptoms and abdominal pain
- affective functions (emotions) can be altered and anxiety and mood changes may be severe, unprovoked and inappropriate. Depression may also occur, as a reaction to, rather than as a cause of ME.
Because each person’s experience with ME is unique, individuals exhibit different symptoms at varying intensities. Also, symptoms may wax and wane and change over time, with some diminishing or disappearing altogether while new ones emerge.
It is very important to obtain an early and proper diagnosis. Your doctor will need to rule out all of the other diseases which share the symptoms of ME, and follow the medical protocol in diagnosing the illness. Be sure to describe all of your symptoms so the doctor has as much information as possible, and see your doctor if new symptoms arise. Currently, a diagnosis of ME is based almost entirely on the history that you describe and the findings upon physical examination. There is presently no single laboratory test that can identify ME with certainly, although there are physiological findings that can support the diagnosis. In fact, it may be that you ‘look normal’ and have mostly normal routine bloodwork and lab tests, which can be confusing for practitioners not experienced with ME.
If your doctor is not knowledgeable about ME, you may wish to share with them the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners. See more at: http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf
There is, as yet, no cure or universal treatment for ME; there is only individual treatment for specific symptoms. However, there are some steps that you can take which may help:
- Aggressive Rest, especially in the early stages and during relapses, is the one therapy universally agreed upon as key in the management of ME;
- Pacing, which means staying within your ‘energy envelop’ by managing your activities as best you can to avoid the push-crash cycle of relapsing symptoms;
- Some Minimal Exercise is encouraged, but always stay within your energy limits, even it means only gentle stretching and very short walks, if possible;
- A Healthy Diet seems to help some patients. Since some people develop food sensitivities, it may be helpful to experiment with diet to discover which are better tolerated and which should be avoided;
- Work with your Medical Professional to obtain appropriate medical support for sleep disturbances, unmanageable pain, reactive depression, any nutritional and hormonal deficiencies, and/or to assist you with lifestyle changes needed to manage a chronic illness;
- Join a Support Group to relieve the isolation and loneliness which ME can create, and to learn more about the illness and how others cope with it.
Above all, when you are feeling a bit better, avoid the temptation to catch up with unfinished tasks as this is likely to cause a relapse. Slowly build up your activity levels gradually and listen to your body when it tells you to rest. It is crucial to recognize your limits and not push beyond them.
- Learn as much as you can about ME from a local support group, your community library, and searching on-line. Please refer to our resources for a list of books and websites on ME;
- Try to pace and not over-commit yourself. Listen to what your body tells you it can and cannot do;
- Keep a journal of your symptoms, activities, feelings and medical history (i.e. appointments and tests). Record what makes you feel better and what makes you feel worse. This will help monitor the course of your ME for yourself and your doctor(s). It will also make you more aware of your capabilities and limitations;
- Join a local ME or chronic illness support group. Please refer to our Support Group link for more information on finding a group in your area. Groups can help you understand and cope with your illness, and they provide an outlet for concerns and fears. They are also a valuable source of information;
- Find a knowledgeable, understanding physician for diagnosis and ongoing treatment. New symptoms should be thoroughly investigated to exclude other illnesses. Your doctor can prescribe medications which may relieve some of your symptoms. Adjunctive and/or alternative therapies many also be of value.
The International Consensus Criteria
The International Consensus build on the Canadian Consensus documents below, setting up specific criteria for the diagnosis of Myalgic Encephalomyelitis.
Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners, 2012, International Consensus Panel, Editors: Bruce M. Carruthers, MD, CM, FRACP(C), Marjorie I. van de Sande, B Ed
The Canadian Consensus Documents
In 2003 Health Canada, in cooperation with the National MEFM Action Network, convened an expert panel to develop and publish a Canadian clinical case definition for the diagnosis and treatment of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. The resulting full document was peer reviewed and published as:
Myalgic Encephalomelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols – A Consensus Document
Bruce M Carruthers, Anil Kumar Jain, Kenny L De Meirleir, Daniel L Peterson, Nancy G Klimas, A Martin Lerner, Alison C Bested, Pierre Flor-Henry, Pradip Joshi, AC Peter Powles, Jeffrey A Sharkey, Marjorie I van de Sande
Journal of Chronic Fatigue Syndrome 11(1):7-115, 2003
In 2005, a summary of the above full definition was published to assist physicians in applying the protocols to clinical practice. The summary is available as:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners. An Overview of the Consensus Document.
Bruce M Carruthers, Marjorie I van de Sande 2005/2006 ISBN: 0-9739335-0-X
The IACFS/ME document
The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) published the ME/CFS Primer for Clinical Practitioners (2014 revision). This document is based on the Canadian Consensus Criteria for diagnosis and treatment of ME/CFS.