Myalgic Encephalomyelitis was classified by the World Health Organization as a neurological condition in 1969.
ME is a serious, complex and disabling neuroimmune condition that affects every system in the body, significantly reducing functional capacity.
Key Symptom: Post-Exertional Malaise
Post-exertional malaise (PEM) or post-exertional neuroimmune exhaustion (PENE) is a pathological loss of energy and worsening of symptoms following minimal physical, mental or emotional effort, or other triggers. The onset of PEM may be immediate or delayed by several hours or days. Recovery is prolonged and may take days, weeks or months.
When people with ME push themselves to use more than their available energy reserves, the loss in functional capacity is inevitable and cannot be reversed by a long rest or a good night’s sleep.
People often struggle to describe this loss of energy, weakness and exacerbation of symptoms. They may use words like crash, payback, debilitating exhaustion.
Read more about PEM
Other common symptoms
- Fatigue: unlike normal tiredness, this is a profound and incapacitating lack of energy.
- Autonomic dysfunction: inability to stand or sit up, air hunger, dizziness, and more.
- Neurocognitive dysfunction: problems with concentration, information processing, memory, physical tasks, and more.
- Immune dysfunction: swollen and/or tender lymph nodes, sore throat, and more.
- Sleep dysfunction: non-restorative sleep, altered sleep patterns, and more.
- Gut: nausea, irritable bowel, food intolerances, and more.
- Pain: in muscles and joints, headache, and more.
- Sensitivities: light, noise, movement, medications, chemicals, and more.
…patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis.
Prof Nancy Klimas MD, AIDS and ME specialist and researcher, University of Miami, Press Conference, 2006
Levels of severity
- Mild: at least 50% loss of function
- Moderate: mostly housebound, requiring support with some activities of daily living
- Severe: housebound and often bedbound, requiring assistance with personal care
- Very severe: totally bedbound; unable to eat, drink or speak
For people with ME, even basic activities of daily living (ADLs) such as toileting, bathing, dressing, talking, and reading can trigger PEM.
The severity of symptoms depends on the severity of the illness. For example, noisy environments may be painful for some with mild illness, while even a whisper might induce a paralysis for some whose illness is very severe.
Cause
Despite much ongoing research, the cause of ME is unclear. The most commonly reported precipitating factor is an infection. ME is a complex disorder and may have a variety of triggers, including exposure to toxins, severe physical or emotional trauma, or a combination of these or other factors. There are some indications that there may be a genetic predisposition.
Course of the illness
Most people with ME will have been ill for months or years before a diagnosis is made. Prognosis is generally better for those who are diagnosed early and receive appropriate management.
The severely debilitating symptoms of ME prevent people from engaging in pre-illness levels of activity for years and often decades. While some improve with appropriate management, few are able to return to their pre-illness level of functioning, and some deteriorate over time. Symptoms fluctuate, with temporary or permanent exacerbations.
Who is affected?
- In Australia an estimated 250,000 people have ME.
- 25% of cases are severe or very severe.
- ME affects all age groups, including young children.
- Peak ages of onset are 10-19 and 30-39 years.
- Fewer than 15% of people with ME are able to work even part-time.
- ME affects four times more women than men.
- Very few people people are able to access the NDIS for ME.
Why No NDIS for ME?
In the 90’s some people started calling ME CFS (Chronic Fatigue Syndrome), which was then called “Yuppie Flu” by the media.
There are people who have Chronic Fatigue as a result of other conditions, or even treatments such as Chemotherapy, and many of these issues resolve over time, or when the treatment stops.
This has led to the belief that it is a temporary illness, and we don’t qualify for NDIS.
There was also a now disgraced study which manipulated results and outcomes to ‘prove’ that CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy) would improve the outcome of ME patients.
They excluded patients from the trial who died, and lowered the bar for ‘successful treatment’ to basically the same level of impaired function you needed to qualify for the trial initially.
Most of this is pretty much lifted straight from SA ME society…. because their information is so good 🙂