What is Myalgic Encephalomyelitis?
Myalgic Encephalomyelitis (ME) has been classified as a neurological disease by the World Health Organisation since 1969, the same category as Multiple Sclerosis and Parkinson’s disease. It affects multiple systems such as the brain (autonomic function, cognitive function, sensory stimuli process, sleep regulation, body temperature regulation, etc.), energy metabolism, immune system, endocrine system, muscles and digestive systems.
An estimated 250,000 Australians have ME (Source: ICP). 25% are housebound or bedbound. The ME burden of disease on society is estimated to cost Australia $4 billion in direct and indirect health costs each year.
Despite these significant figures, ME remains an orphan disease, with no specialist provision within the healthcare system.
Until better diagnostic criteria can be published, we support Myalgic Encephalomyelitis: International Consensus Criteria (ME-ICC) for the planning and operation of the company. The clinic will adopt International Consensus Primer for Medical Practitioners (ICP) as a guideline for diagnosis and management.
Some of the recommendations made by ME-ICC that differentiate our direction from the existing ME/CFS organisations are;
- Only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC
- Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC.
- Recognition of symptom severity & impact:
a. Mild: meet criteria and have a significant reduction in activity level
b. Moderate: approximately 50% reduction in pre-illness activity level
c. Severe: mostly housebound
d. Very severe: mostly bedbound and require assistance with daily functions *
* We recognise a need to separate the Very Severe category into Very Severe and Extreme Severe to provide adequate care and support for this group of patients. The clinical care for the Extreme Severe patient needs to focus on palliative care. The discussion on Voluntary Assisted Dying and Euthanasia for Extreme Severe patients would be necessary.
Our friend, ME International produced ME-ICC education videos for clinicians in May 2020. We encourage clinicians to watch this 20 minutes video. It has time stamp bookmarks if you need to learn one subject at a time.
ME International’s Position Paper explains why ME Group Australia support ME-ICC.
ME-ICC for research participants selection
ME-ICC facilitates clearer identiﬁcation of patients for research studies. Accordingly, we support quality ME research that uses ME-ICC for research participant selection for consistent and relevant evidence for ME.
Our local ME research centre, the National Centre for Neuroimmunology and Emerging Diseases (NCNED), has led prestigious research into ME-ICC for a decade. The NCNED was awarded $1.46 million in National Health and Medical Research Council funding for their research into Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS).