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What is ME/CFS?
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome is a serious long-term, complex, multi-system illness. It affects people’s ability to do everyday tasks.
Researchers have found that people with ME/CFS have:
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an abnormal physiological response to activity,
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altered immune function,
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impaired energy production,
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and changes in gut bacteria.
People with ME/CFS experience a range of symptoms and these can be worsened by any kind of effort or activity.
ME/CFS affects people of all ages, ethnicities, and genders.
Conservatively, it is estimated that there are more than 20,000 people affected in New Zealand (4 in 1,000). We estimate that there are at least 2,661 people in Canterbury with ME/CFS, including 362 children and young people. This number will grow as a result of the Covid-19 pandemic.
How do I say Myalgic Encephalomyelitis?
It helps to break it up into small syllables…
My–al-gic En–ceph–a–lo–myel–i-tis
Possible Causes
The causes and the specific pathologies of ME/CFS are not yet understood – there just hasn’t been enough research done.
ME/CFS most often starts after an infectious illness such as glandular fever or Covid-19. Other factors may also be involved for some people:
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family genetics,
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environmental toxins,
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physical trauma (such as a car accident or surgery),
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and stress (physical, mental or emotional).
Some people develop ME/CFS gradually. For others, it develops suddenly after the triggering event.
Diagnostic Criteria (IOM 2015)
Three primary symptoms are required for diagnosis:
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Greatly lowered ability to do activities that were usual before the illness:
This drop in activity level occurs along with fatigue and must last six months or longer (3 months in children).
Worsening of symptoms after physical or mental activity that would not have caused a problem before the illness:
This is known as Post-Exertional Malaise (PEM). PEM is often delayed, typically happening 24-48 hours after exertion.
Some people describe PEM as feeling like they have the flu. People may be house-bound or even completely bed-bound, especially during PEM.
Sleep disturbance:
People with ME/CFS do not feel refreshed after a full night’s sleep. At times, people with ME/CFS may have trouble falling asleep or staying asleep, may sleep for over 12 hours a day or need daytime naps, or may have a delayed sleep onset.
In addition, at least one of the following symptoms are required:
Problems with cognition:
Most people with ME/CFS have trouble thinking quickly and concentrating for periods of time compared to prior to illness onset; there may be trouble finding words or slurring of speech, particularly during PEM.
Orthostatic Intolerance:
This is a worsening of symptoms while standing or sitting upright: This includes feeling lightheaded, dizzy, weak, or faint. There may be vision changes like blurring or seeing spots.
Additional Symptoms
Other common symptoms:
These may be present but are not diagnostic.
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Chronic pain or fibromyalgia
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Tender lymph nodes in the neck or armpits
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Digestive issues like nausea, heartburn, diarrhoea, constipation, abdominal pain
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Muscle pain and aches and rapid muscle tiring
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Joint pain without swelling or redness
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Headaches, either new or worsening
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Nerve pain, felt as stabbing, burning, tingling, pins and needles
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A sore throat that happens often
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Chills and night sweats
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Allergies and sensitivities to foods and medications
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Sensitivity to chemicals, odours, light, noise, and other sensory inputs
