What is ME/CFS?
Imagine something as simple as taking a shower made you feel like you'd run a marathon... with a sack of rocks tied to your back. This is what around 6,000 Aucklanders live with and it can have a profound impact on their lives.
ME/CFS is a chronic illness whereby overwhelming fatigue is often triggered by even minimal exertion.
Like any illness, there is a continuum of severity - some patients are bedbound and others able to function day-to-day. Research in New Zealand shows that ME/CFS affects people's lives as severely as Parkinson's Disease and Multiple Sclerosis.
It is often triggered by a viral infection (though there are a number of other causes) and ME/CFS can strike anyone. Whilst there is no known cure there are ways sufferers can manage their illness and some do recover.
Although post-exertional fatigue is the defining feature of this illness, ME/CFS entails a whole range of other symtoms. Pain, gastrointestinal upset, orthostatic intolerance, unrefreshing sleep, heart arrhythmias, cognitive impairment, and a number of other symtoms are common amongst ME/CFS patients. It's not just about fatigue.
Read below to find out more.
An Existence Project | Paper Stop-motion Animation About ME/CFS
Short video explaining what it's like to live with ME/CFS
A short stop-motion animation for people with this illness to share with their friends and family about what it is like to live with mild or moderate ME/CFS.
Created by Inga Topolnicki, who decided to make this film so there would be something accessible which would help to communicate the complex aspects of living with this chronic illness.
Who gets ME/CFS?
Men, women and children of all ages and of all social and ethnic backgrounds can develop ME/CFS. However it has been shown that the condition is more common in females, with a 70:30 female to male ratio, and that the most common age of onset is within the 35 – 55 year age bracket.
Statistics from the UK and USA show population prevalence of ME/CFS as 2 to 4 people per thousand. (At least 250,000 people in the UK and 1,000,000 in the USA have ME/CFS). It is therefore thought that there could be up to 20,000 people in NZ with the condition.
In the 1980s, ME/CFS was referred to as "Yuppie Flu", reflecting a common view that it only strikes middle class, caucasian, people in developed countries.
This is incorrect, as research shows that ME/CFS affects people regardless of race and social class. Some research suggests the illness is even more common amongst minority groups.
What does ME/CFS actually feel like?
This depends on the patient, as symptoms vary from person to person.
Many sufferers say that having ME/CFS is like taking your worst flu, multiplying it by five, and not recovering from it. The absolute exhaustion, weakness, sleep disturbance, muscle aches and nausea are all part of the daily lives of many sufferers.
ME/CFS sufferer, Jenny Andrews, describes ME/CFS as follows:
"Chronic fatigue is like having horrendous nausea and then being thrown on a ship - and feeling sea sick - with bags of potatoes tied to each limb - and then someone asking you to run a marathon."
A former Captain of the New Zealand League team describes his ME/CFS:
"I’ve been through some pretty horrific accidents in my life,” says Richie Barnett, former rugby league star and one-time Kiwi captain, recalling in particular the devastating on-field headbutt in 2000 that resulted in 10 plates being inserted into his face. “It was one of the most difficult and painful things I’ve been through, a complete facial reconstruction. “But I would rather go through that again than go through ME[CFS]. Hands down"
Source: The Listener
Many don't consider ME/CFS as 'serious' as other chronic illnesses.
Whilst some with ME/CFS lead relatively normal lives, functioning day-to-day, there are a significant number of sufferers who remain unseen who cannot leave their homes.
Research in New Zealand shows that ME/CFS can affect quality of life as seriously as Parkinson's Disease or Multiple Sclerosis.
It's an invisible illness, often causing others to underestimate the seriousness of ME/CFS.
What causes ME/CFS?
The precise cause of ME/CFS remains unknown. However, the illness is commonly triggered by an immune system event.
Glandular Fever, other viruses, infections, and chemical exposure are all commonly associated with the onset of ME/CFS. This isn't always the case as ME/CFS is also associated with physical trauma and sometimes there is no apparent trigger at all.
Some factors have been shown to heighten people's vulnerability to ME/CFS. Persistent stress, over-training, and even certain genes tend to make people more likely to develop ME/CFS.
In ME/CFS it's common for a patient's immune system to remain active, even after the initial infection has cleared. Basically their immune system doesn't "switch off" when it should. If one's immune system remains active they can continue to have flu-like symptoms. This is what we see in ME/CFS patients.
A host of other biological abnormalities have been documented in ME/CFS (see "Is it real?"). There is no shortage of things going wrong, rather research is trying to come to grips with exactly how these abnormalities start, and why they cause symptoms of ME/CFS.
Some have suggested that ME/CFS is depression as there are a number of overlapping symptoms between the two illnesses. This is a misconception which isn't helped by the fact that many ME/CFS sufferers suffer from depression as a result of having chronic illness (i.e. secondary depression).
ME/CFS differs from depression in a lot of ways. Here are five quick ways to distinguish the illnesses:
Cause - The most common trigger of ME/CFS is a viral infection, and most triggers seem to implicate the immune system
Symptoms - ME/CFS is associated with a range of symptoms that aren't present in depression (e.g. orthostatic intolerance)
Biological changes - research shows a number of biological abnormalities that aren't present in depression. (e.g. low VO2 threshold)
Post-exertional malaise - depressed patients can respond well to rigorous physical activity, however this makes ME/CFS patients worse
Attitudes - when patients are asked what they'd like to do when they are well, ME/CFS patients generally list a number of things. Often depressed patients do not as they lose interest in activities they previously enjoyed
What are the symptoms?
ME/CFS is not the tiredness that we all feel from time to time. People with ME/CFS find their daily activity significantly reduced and show some or all of the following symptoms:
• Extreme exhaustion
• Post-exertional fatigue and malaise
• Temperature irregularities
• Headache of a new type
• Muscle and joint pain
• Gastrointestinal symptoms
• Genitourinary symptoms
• Drug and alcohol intolerance
• Loss of concentration, memory loss (brain fog)
• Visual problems
• Depression, emotional instability
• Orthostatic intolerance
• Heart rhythm irregularities
• Sore throat and swollen glands
• Non-refreshing sleep
Symptoms are irregular and vary in severity. Relapses after long periods of improvement are common.
Some think of ME/CFS as normal tiredness, saying things like "I get tired at the end of a long day too". ME/CFS is very different to tiredness experienced by healthy people.
Firstly, it's much more severe, with some sufferers describiing it as an 'unnatural' or 'debilitating' fatigue unlike any fatigue they've ever experienced.
Secondly, it can be triggered by even the smallest amount of activity. For example, the level of fatigue that a healthy person experiences after running a marathon can be triggered, in a person with ME/CFS, by something as simple as taking a shower.
Thirdly, the tiredness is often accompanied by a range of symptoms which heighten the feelings of exhaustion.
How is ME/CFS diagnosed?
Research is constantly progressing, adding to our understanding of the underlying causes of ME/CFS. Changes have been shown in the immune, neurological and endocrine systems and it is thought that a complex interaction occurring within these systems results in the illness.
There is no specific diagnostic test, although throughout the world it is now accepted as a serious physical illness which often has a severe impact on the life of the sufferer. Diagnosis is made by a thorough medical history and examination, preferably by a doctor experienced in this kind of disorder.
A diagnosis may be made if the symptoms have been present for no less than six months. This can be problematic as it is now becoming evident that early intervention can produce a better outcome.
Diagnosis is a process of exclusion, whereby other illnesses that could be causing similar symptoms are ruled out.
Some physicians believe that ME/CFS shouldn't be diagnosed due to the perceived level of subjectivity involved, and consider it a "waste basket" diagnosis.
Whilst we don't have the luxury of an objective diagnostic lab test, there are a number of reasons an ME/CFS diagnosis should be considered:
Peer reviewed clinical criteria can guide a robust ME/CFS diagnosis. These criteria distinguish ME/CFS from alternative diagnosis such as depression. Click here for more
Making a diagnosis is important. Early diagnosis and management has been shown to improve long-term outcomes
Lack of an objective biomarker is not unique to ME/CFS, with illnesses like Parkinson's Disease also being diagnosed on the basis of exclusion
How is ME/CFS treated?
Currently there is no cure for ME/CFS, but the range of treatments available should not be underestimated.
Early diagnosis and management has been shown to result in better long-term outcomes, so it's suggested that patients embark on an appropriate management programme sooner rather than later.
Symptoms vary from patient to patient and, as a result, so do treatments. It's important to understand that a treatment that works for one person may not work for another.
Some physicians believe there is little that can be done to treat ME/CFS patients. Whilst there is no cure, there are a lot of treatments that have been proven to help manage symptoms and improve quality of life.
Many believe that it is a misconception Graded Exercise and Cognitive Behaviour Therapy are the most effective management techniques for ME/CFS. In fact world leading specialists are arguably most optimistic about a chemotherapy drug in the treatment of ME/CFS. Studies (although in an early stage) are producing some remarkable results
Do people with ME/CFS recover?
This varies enormously.
Overseas estimates of full recovery rates vary from 7% to around 10%. In general these will be people who developed the illness at a younger age.
Recovery may take two to five years or longer. Approximately 70% improve markedly. Again, this may take several years. While they don’t return to their pre-illness state of health and must remain vigilant to avoid relapses, with adjustments they can still lead fulfilling lives.
Around 20% will remain chronically disabled, largely housebound, and at times bed-bound.
Some assume that, because there is no cure for ME/CFS, patients don't recover. This is not true.
Despite there being no cure, some patients do recover. The reasons why some recover and others do not are not clear. However, implementing a solid management programme could improve chances of recovery.