How many sufferers are there in NZ?
There are estimated 16-20,000 sufferers in New Zealand (2-4 per thousand). To put that in perspective, the incidence is higher than Multiple Sclerosis, and considerably higher than a woman’s lifetime risk of developing lung cancer.
Who is at risk for getting this condition?
Anyone; ME/CFS is indiscriminate – it strikes people of all ages, racial and socio-economic groups.
What are the characteristic symptoms of this illness?
ME/CFS is characterised by incapacitating fatigue, (experienced as profound exhaustion), problems with concentration and short-term memory, non-refreshing sleep and inability to exercise.
The fatigue is often accompanied by flu-like symptoms such as pain in the joints and muscles, tender lymph nodes, sore throat, poor temperature control and headache.
A distinctive characteristic of the illness is post-exertional malaise: a worsening of symptoms following physical or mental exertion occurring within 12 to 48 hours of the exertion and requiring an extended recovery period.
There is often a tendency to light-headedness and/or dizziness associated with postural change.
The symptoms of ME/CFS are highly variable and fluctuate in severity, complicating treatment and the person’s ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the many debilitating symptoms with which people with the illness must contend.
The neurocognitive symptoms often affect the ability to work or study. The physical symptoms make it hard to undertake physical work.
How does someone know they have ME/CFS, and are not just tired?
Typically, though not always, the illness will follow a viral infection such as flu or glandular fever. The acute symptoms die down, but the exhaustion persists. There is a tendency for the severity of the illness to be “up and down”.
Tiredness is a common symptom in most illnesses. ME/CFS brings with it a constellation of other debilitating symptoms.
The symptoms are very different from ‘just tiredness’.
In general, in order to receive a diagnosis of ME/CFS, a patient must satisfy a set of medical criteria:
- The illness must have lasted for six months, although the doctor may be alerted to the possibility for several months before.
- A specific number of symptoms, such as outlined above need to accompany the fatigue.
- The doctor may use a checklist to verify the diagnosis, after doing a number of tests to eliminate other causes of fatigue and the accompanying symptoms.
If the criteria are satisfied, the diagnosis can then be made. Unfortunately as yet there is no definitive blood test for the illness. But many illnesses do not have a blood marker, and using criteria is a common way for a doctor to make a diagnosis.
What is the average length of time a person will have ME/CFS?
The clinical course of ME/CFS varies considerably; the actual percentage of patients who fully recover is hard to establish, as some people feel they have recovered, but have really just learnt to manage the illness within the bounds of their ability.
Some patients recover to the point that they can resume work and other activities, but continue to experience periodic ME/CFS symptoms.
Some patients recover completely with time. A few get progressively worse.
ME/CFS often follows a cyclical course, alternating between periods of illness and relative wellbeing. No characteristics have been identified that make one patient more likely to recover than another.
At illness onset, the symptoms will depend on the type of viral infection. Symptoms may change over time and can involve almost any system of the body. Depression as a result of chronic on-going illness may occur, and should be treated efficiently.
The illness can be worsened by physical or mental stress and/or pushing exercise hard.
ME/CFS patients on average have a greater degree of functional disability than patients with chronic obstructive lung disease, cardiac disease, osteoarthritis and depression.
A small group of very ill ME/CFS patients are unable to care for themselves – they need help with bathing, dressing and meal preparation. They are unable to go to work or school and may be able to tolerate only short spells sitting upright. Symptoms can be very severe.
Is there a dedicated treatment centre in New Zealand?
No unfortunately there isn’t.
What are the treatments for ME/CFS?
There is no universal treatment, but specific symptoms can be managed as outlined below:
- Attention to relief of stress and a very cautious approach to any exercise is important. Time outside in fresh air is beneficial.
- There is no specific dietary approach that helps. But the aim should be for good nutrition with plenty of variety. For those with low blood pressure and associated symptoms such as dizziness, extra salt should be added regularly through the day.
- Supplements should only be used if there is a good indication. Low levels of certain elements in the blood or diet may need to be corrected. Magnesium can help with muscle cramps and improve sleep. Coenzyme Q10 may also improve muscle pain and weakness. B12 injections can improve the energy levels and brain function for some patients. Vitamin D may be needed if unable to get
- Sleep disorders can be treated with a variety of non-habit-forming medications.
- Pain is often relieved if sleep is improved. Anticonvulsant medications or anti-inflammatory drugs may help.
- Occasionally anti-viral medication is used if there is a lingering infection, such as herpes.
The use of supplements and medication will need to be discussed with the doctor. Those with this illness are often very sensitive to medication.
Any treatment needs to be based on good research evidence to support its use.
Do New Zealand sufferers have access to newer drugs that may help?
Patients sometimes have to pay for newer drugs.
A number of drugs are being researched overseas, which may eventually prove useful.
The daily routine during serious relapses.
The severity of the symptoms may mean that the ME/CFS patients are unable to care for themselves during relapses. They may need help with self care – They may be unable to go to work or school and may be only able to tolerate short spells sitting upright or out of bed.
They may suffer many symptoms including debilitating headaches, muscle pain, unrelenting fatigue that is not eased by rest and brain “fog”.
What are the effects on family, friends and employers?
Often, families are left caring for their ill family member. Partners/mothers may have to give up work in order to do so. In other instances people are left to fend for themselves. Coping with the benefit system can be difficult if a person is bedbound or has very limited energy. Finding a suitable advocate is wise. If the illness persists, relationships can break down and friends can drift away as the sufferer does not have the energy to reciprocate friendship. Even sympathetic employers may have to eventually sever the employment contract.
The most important issues for those with this illness are:
- Education – learn as much about the illness as possible, and educate family, friends, employers, teachers etc – they can then be supportive.
- Have a support network to provide company, help with chores etc.
- Join a support group if there is one in your area.
- Learn to manage stress, and seek counselling or psychological help if necessary.
- Be very cautious about exercise, never overdoing it. But try to get outside.
- Manage finances carefully and find out if there are any suitable benefits available.
- Eat regularly with plenty of variety.
- Only use supplements with proven benefit, and seek out cheapest options.
- Discuss treatment options with your doctor, and stick to well researched approaches.
- Develop some new hobbies/interests that can be managed.
Learn to identify possible causes of relapse and then try to balance out life to minimise the risk.
Research Information websites:
ANZMES YouTube Channel on Research
Frontiers Paediatric Primer
International Association for Chronic Fatigue Syndrome /Myalgic Encephalomyelitis
Open Medicine Foundation
Solve ME/CFS Initiative