1. What is ME/CFS?
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious medical condition marked by extreme fatigue, pain, immune dysfunction and cognitive difficulties.
2. How does it feel to have ME?
It feels like having a flu that never goes away. Everyday activities such as walking, cleaning, having a conversation and reading can be extremely taxing for people with ME.
Research shows that people with ME on average have a lower health-related quality of life than those with many other major illnesses such as chronic renal failure, angina, and even various types of cancer.
3. How is ME different to normal tiredness?
Unlike normal tiredness, people with ME can feel worse for days or weeks after physical or mental effort. This Post Exertional Debility may be delayed by a day or two after the exertion. Strength is commonly not restored by sleep.
4. Who gets ME?
It affects women more than men, like the autoimmune diseases Multiple Sclerosis and Rheumatoid Arthritis. People of any age can develop ME, including children, teenagers and older people, often following a severe viral infection such as glandular fever.
5. How widespread is ME in Australia?
Around 104,000 Australians suffer from ME. About a quarter of these are housebound or bed-bound.
6. How can people with ME get better?
As yet there are no proven treatments to cure or reverse ME. It cannot be overcome by merely taking some vitamins, rest and relaxation, exercising more or by having a more positive attitude. It’s much more complex than that, complex enough to perplex even the most highly trained medical minds.
7. How can friends and family help those with ME?
It can be a shock that your friend or family member with ME now finds normal activities so exhausting. Even though it pains you to see your friend so disabled, you can make a big difference by simply sticking by them and giving moral support. For example:
- Tell them you believe them when they say they feel like they’ve been hit by a truck.
- Tell them you accept that they cannot do the things they used to do.
- Together, bravely face up to any adjustments to work, career or study expectations.
- Accept that recovery may be very slow and that there is no sure fire cure.
- Keep in contact with them. If they don’t call you back or if they miss your normal social outings they were probably too exhausted and actually need you now more than ever.
Ian Barnes, June 21st 2016
A related resource: “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Real Illness” by Prof Anthony L Komaroff.