Medication

Anti-depressants

The two most common types of antidepressant likely to be prescribed are:

Tricyclics - these increase the level of noradrenaline in the brain. The majority have a sedating effect, which can be useful for ME patients with sleep disturbance. The most commonly used tricyclic in ME is amitriptyline.

SSRIs (Specific Serotonin Reuptake Inhibitors) - these increase the level of serotonin in the brain. They have an 'activating' effect.

NB. Doctors may be reluctant to prescribe antidepressants to children.

As many patients with ME acquire sensitivities to food, drugs and chemicals, it is very important to consult with your GP before making any changes in the way medication is taken. Don't cut down or stop taking your medicine without seeing your GP/prescribing doctor first. If you are instructed to stop taking your medicine, cut the dose down gradually before stopping completely to limit any potential withdrawal reaction (even to non-addictive medication). If you experience severe mood swings whilst taking SSRI antidepressants, see your GP.

AMITRIPTYLINE

What is it used for?
Some doctors use the drug amitriptyline to help people with ME manage their pain.  As it also makes you sleepy, it is particularly useful for young people who have pain and cannot sleep.

Isn't it an antidepressant?
Yes, Amitriptyline is an antidepressant if used in a larger dose, but that isn't why it is being used in these circumstances.  At the sort of dose used in ME it is not being used as an antidepressant and it probably works in a different way.

What is the dose?
This will depend on your age and your weight.  Dosage usually starts at between 10 - 20mg and increases to up to 40 - 50mg. You need to take it once a day and as it will probably make you feel sleepy it is best taken it in the evening.  Do not take more than the prescribed dose and keep your tablets out of reach of young children.

Are there any serious side effects?
Side effects at this small dose are unusual, but some people do say they feel generally unwell with it.  If this is the case you could reduce the dose to 5mg a day and then increase it gradually up to your original starting dose.

How long should we continue for?
Amitriptyline normally takes 7 to 21 days before it starts to work.  If you have no benefit after that time, it would be normal for your dose to be increased to 40 - 50mg once a day (don't increase the dose yourself - see your doctor).  If you have had no benefit after 6 weeks at this dose discuss it with your doctor.  It may be that this is the wrong drug for you and you will need to discuss alternatives.
Thanks to paediatrician Dr Esther Crawley of the Bath & Bristol CFS/ME NHS paediatric service for this leaflet.

MELATONIN

What is it used for?
If young people find it very hard to get off to sleep it is usual to start by trying to sort out their sleep hygiene (see AYME info sheet on sleep).  If they still have problems some doctors try melatonin, including some AYME medical advisors.  Melatonin is a synthetic version (manufactured copy) of a naturally produced hormone made in the pineal gland in the brain. This natural hormone is mainly produced at night and is involved in the normal regulation of sleep and in setting the body's biological time clock.

What is the dose?
Usually either 2.5 or 5mg at night depending on the young person's weight. This is usually given once a night about half an hour before bedtime.  In some cases it is given in higher doses (3-9mg).

How do I take the medication?
Melatonin comes as a virtually tasteless white powder in capsules. The capsule can be swallowed or can be opened and sprinkled onto a spoonful of food or drink and then taken immediately.

Are there any serious side effects?
Melatonin appears to be very safe but is relatively new use for CFS/ME and we do not know whether there are long term side effects. There are no large studies in this patient group so we may not know about rare side effects.  It is currently "unlicensed"� in the UK but it can be prescribed by specialists.  It can be bought over the counter in the USA for jet lag, or via the Internet.

How long should I take it for?
It is normally suggested that young people try Melatonin for about 6 weeks. If they have no benefit after 6 weeks they should stop. Sometimes it works well at first, but the effects wear off after a few months.  If this happens you can try taking it on alternate days which may help, or have a break for a few months and try again.

October 2005.  Thanks to paediatricians Dr Esther Crawley and Dr Nigel Speight.

Article last edited on Thursday 12th August 2010                          Printable Version