What is ME/CFS?
Myalgic Encephalomyelitis, often referred to as Chronic Fatigue Syndrome (abbreviated to ME/CFS) is a complex multi-system and chronic physical illness made up of a number of ongoing symptoms that can range in severity from mild to debilitating.
Anyone can get ME/CFS, regardless of age, gender, ethnicity, and socio-economic status. It can last for years, and in some cases may lead to a serious disability.
Biological markers for ME/CFS are still requiring more research but the majority of cases are triggered by an acute infection, (such as the Epstein Barr Virus or in some cases a bacterial infection), however it can develop after chemical exposure or severe stress.
"ME/CFS is globally accepted to be a physiological/biological disorder".
Professor Warren Tate, Emeritus Professor of Microbiology, University of Otago
ME/CFS affects
4 x more women than men
ME/CFS is most common in
40-60 year olds
Approx 25% of ME/CFS patients are house or bed-bound
Around 15% of ME/CFS patients are less than
18 years old
Symptoms of ME/CFS
The symptoms of ME/CFS are varied, and often occur on a spectrum ranging from mild to very severe. However, the severity of an individual’s illness can fluctuate unpredictably over time.
​
"In late 2020, I managed to find two signatures one in immune cell proteins which signal a defect in energy production and dysfunction in immune inflammatory response and the other in DNA in the epigenetic code."
Professor Warren Tate, Emeritus Professor of Microbiology, University of Otago
​
This is very much a physical illness however often people with ME/CFS experience feelings of anxiety and depression due to the disruption this illness causes to their lives. A dysfunctional nervous system is a common contributor to feelings of anxiety or symptoms that may look like anxiety.
​
The key aspects of ME/CFS include a reduction in a person's ability to engage in activity that they were able to do before their illness (that lasts more than 6 months), fatigue that doesn't go away with rest, fatigue after exertion (see PEM below), un-refreshing sleep and cognitive impairment such as brain fog and concentration problems.
This ME Action resource is an excellent overview of the diagnosis and management of myalgic encephalomyelitis.
Impaired cognition, memory loss or 'brain fog'
Unrefreshing sleep
Other Symptoms:
Flu-like symptoms - including sore throat and swollen glands
Body aches and pain
Orthostatic Intolerance (heart rate or blood pressure abnormalities including POTS)
Circadian rhythm disruptions (sleep/wake cycle dysfunction)
Temperature irregularities
Increased levels of inflammation
Headaches or migraines
Increased allergy response
Feelings of loss and grief, as a result of physical illness symptoms
Sensitivity to light, sound or vibration, taste, odour or touch
Gastrointestinal symptoms
Poor temperature regulation - cold or heat intolerance
New food or chemical sensitivities
What is PEM?
Post Exertional = occurs after exertion or activity
Malaise = a general feeling of illness and weakness
PEM is one of the defining factors of these illnesses, can happen after any type of activity and makes symptoms worse.
It can begin hours, or even days, after engaging in an activity - and then last for days, weeks or even months.
​
PEM can result from physical, mental, emotional or even sensory activities.
For some people it can happen with even small tasks like showering or walking, or a mental activity such as a video call or computer work.
Dysautonomia and PoTS
A collection of these symptoms can be due to a condition called Dysautonomia, which is when our autonomic nervous system doesn’t function properly.
POTS (Postural Orthostatic Tachycardia Syndrome) is a common form of dysautonomia and not only can explain some of the symptoms, but can easily be tested for and treated.
Strategies to help you
If you have ME/CFS there are a number of things we suggest:
​
-
Look out for symptoms of dysautonomia and related conditions and talk with your doctor about testing for POTS, then look at the treatment options available.
-
Use the symptom list to confirm your symptoms then track them to work out what makes your symptoms better or worse and what triggers them.
-
Use the spoon theory and other pacing tools, to start pacing, prioritising and planning your activity to avoid getting Post exertional malaise and making your symptoms worse.
-
Use breathing exercises, yoga or other tools to calm the nervous system and promote rest.
-
Check out our resources section for more information and illness management options.
-
Join our online Facebook Support group.
-
Become a member for free to access our latest illness management information, our online support groups and if you are in Auckland, chat with our Client Support Coordinators about how we can help you directly.
​
-
Check out the Long COVID online Support Tool. While developed for people with Long COVID the strategies and information are relevant for anyone with ME/CFS
Other disorders linked with ME/CFS and Long COVID
ME/CFS often occurs comorbidly alongside the following disorders:​
-
Mast Cell Activation Syndrome (MCAS)
-
Allergies and intolerances
-
Fibromyalgia (FM)
-
Irritable Bowel Syndrome (IBS)
-
Multiple Chemical Sensitivities (MCS)
-
Breathing Pattern Disorder
The Spoon Theory
This is based on a true story developed by a woman who wanted to find a way to help her friends understand what it was like to live with a Chronic Illness that caused debilitating fatigue.
Two good friends are catching up for coffee and one asks the other "So, what is it actually like, living with a chronic illness?"
Frustrated at having explained her illness over and over again but people still not understanding, she decides to try a different approach.
​
She grabs all the spoons from her table and tables nearby and puts them in a pile.
"Imagine everything you do costs spoons... "
If you shower, that is one spoon (she removes one spoon from the pile).
If you go to work for a few hours that’s 5 spoons (she removes five spoons from the pile).
Healthy people generally have unlimited spoons. They can do everything that time allows them during their day.
But people living with post-viral illnesses like ME/CFS and Long COVID only have a small number of spoons available to them each day. So we have to make careful choices.
Seeing you today cost me four spoons, so I wasn't able to do my household jobs or shower today, as I also have to make dinner later."
How many spoons do you have?
If you have ME/CFS or Long COVID you may only have 10 spoons of energy available each day. This is called your baseline.
If you use more than 20, you'll begin to experience Post Exertional Malaise (PEM) and your symptoms will get worse. Pacing is a technique that helps you find your baseline (your daily ‘spoons’), and then plan your daily activities to not exceed your amount of daily energy (‘spoons’) available.
Living within your baseline reduces PEM and therefore helps you better manage your symptoms.
Paper Stop-motion Animation About ME/CFS
An Existence Project
An Existence Project is a short stop-motion animation about what it is like to live with mild or moderate Myalgic Encephalomyelitis (ME) commonly known as Chronic Fatigue Syndrome (ME/CFS).
It was created by Inga Topolnicki using handmade watercolour paper props. She decided to make this film so there would be something accessible people could show their friends and family which would help them communicate the complex aspects of living with this chronic illness.
