There is no specific test for ME/CFS, so diagnosis will be done by your doctor based on your symptoms.  The trouble is that many of the symptoms (see below) can be attributed to other illnesses which must be ruled out, and the symptoms must have been present for three months or more, so it can take time to diagnose ME/CFS.

Typical symptoms include:

• Feeling tired all the time – this is not like the tired you feel after a poor night’s sleep, it is an overwhelming tiredness which isn’t alleviated by sleep or rest.
• Feeling unwell all the time
• Problems sleeping
• Problems thinking clearly, concentrating, and remembering things
• Slow recovery after exercise
• Joint and muscle pain
• Headaches, eye pain
• Feeling dizzy or sick and unable to tolerate some foods, drinks and chemicals
• Flu-like symptoms
• Heart palpitations

These symptoms can change rapidly, and feel better or worse day by day, even hour by hour.

There is currently no specific treatment for ME/CFS, but doctors can prescribe medicines to treat individual symptoms such as poor sleep.  Doctors should refer young people to a Paediatric Specialist ME/CFS team where they are likely to be seen by a range of specialists including physiotherapists, exercise physiologists, occupational therapists, dieticians, and counsellors.

It is hard living with ME/CFS, patients feel really unwell and miss out on day-to-day life because they simply don’t have the energy to participate.  Because it is a disease which is not fully understood by the medical profession it can take time to get a diagnosis.  Friends and family often don’t understand quite how debilitating the illness can be and become frustrated.  Patients with ME/CFS often have to make major lifestyle changes to manage their illness, and all of this can make patients more susceptible to developing mental health issues, such as depression.

If you have a child suffering from ME/CFS, here are a few tips that might help:

1. Encourage them to stay connected to friends even if only online.
2. Encourage them to be part of the healing process, i.e. make sure they understand what the experts are saying during a consultation, and encourage them to experiment and find foods and practices that help them feel a little better.
3. Help them manage the hard emotions through activities like journaling, meditation and counselling. If they’re unsure at first, perhaps you could start the activity with them.
4. Help them feel confident about themselves and their ability to get better.
5. Never underestimate the power of touch – a gentle foot/hand massage. Your physical presence will give comfort.

If you, or someone you know, has been diagnosed with ME/CFS we recommend you get in touch with the ME Association which offers information, advice, and support.