By Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
Sleep disturbance is a core symptom of ME/CFS with various problems being reported.
These can range from hypersomnia or increased sleep requirements – often during the very early stages of the illness – through to difficulty initiating sleep at bed-time, to frequent wakening during the night.
Sometimes a complete reversal of normal sleep rhythm whereby people are sleeping more during the day and are then awake for much of the night.
Whatever type of sleep disturbance occurs, people with ME/CFS will normally report that they awake feeling unrefreshed – even after a period of several hours good solid sleep.
Such sleep disturbance can also be accompanied by vivid dreams and restless legs syndrome – which makes it even more difficult to obtain a good night’s sleep.
Unfortunately, there has been very little in the way of good quality research into both the cause and treatment of sleep disturbance in ME/CFS.
However, the ME Association’s Ramsay Research Fund has made a start by funding some research at the University of Northumbria. This is summarised and referenced in the Research section of ‘ME/CFS An exploration of the key clinical issues‘.
Lack of research also means that management of sleep disturbance in ME/CFS is often left to self-help measures – with drug treatments only having a very limited role.
A low dose of amitriptyline, a drug that is normally used to treat depression at higher doses but causes sedation at low doses, can sometimes be helpful (but not in combination, if someone is also taking a selective serotonin reuptake inhibitor/SSRI drug), as can a very short course of a short-acting hypnotic drug where someone is having difficulty in getting off too sleep.
Melatonin is a natural hormone made by the body’s pineal gland. This is a pea-sized gland located just above the middle of the brain.
During the day the pineal is inactive. When the sun goes down and darkness occurs, the pineal is “turned on” by a special light sensitive centre in another part of the brain (the hypothalamus) and the pineal begins to actively produce melatonin, which is released into the blood.
Usually, the release of melatonin occurs around 9 pm. As a result, melatonin levels in the blood rise sharply and you begin to feel less alert. Sleep becomes more inviting.
Melatonin levels in the blood stay elevated for about 12 hours – all through the night – before the light of a new day when they fall back to low daytime levels by about 9 am.
Daytime levels of melatonin are barely detectable.
Melatonin can be prescribed to help relieve jet lag and adjust to new time zones or to help with sleep disorders. However, it is not licensed for use in the UK unless you are aged over 55 and it can only then be prescribed for a short period. So most doctors are reluctant to even recommend it.
As a result, people are often obtaining it via the internet – where the quality of medical products is causing concern. For reasons that are difficult to understand, the NICE guideline on ME/CFS states that melatonin can be considered for use in children – but only under specialist supervision.
126.96.36.199 Melatonin may be considered for children and young people with CFS/ME who have sleep difficulties, but only under specialist supervision because it is not licensed in the UK.
NICE guideline for ME/CFS.
The ME Association receives regular reports from people with ME/CFS (mainly adults) who are using melatonin – often for more severe sleep disturbance. Although the feedback is mixed, there are clearly some people who are finding melatonin to be both safe and effective.
So we now want to fund research that is going to look at the role of melatonin in ME/CFS and assess whether its’ use is a safe and effective form of treatment for certain types of sleep disturbance in a proper clinical trial.
We have already had some preliminary discussions on how this research might be carried out. The first stage, which is why we are conducting this website poll, is to find out what has happened when people with ME/CFS have used melatonin.
So please let us know whether or not you have used melatonin and, if you have, how helpful you found it to be. You will find the website poll on the homepage of our website.
The ME Association has an information leaflet covering all aspects of the management of sleep disturbance and this comes with information on both Circadin (melatonin on prescription) and restless legs syndrome.
There are also NHS ‘sleep clinics’ where people with more severe sleep disturbances can be referred by their GP for help with both diagnosis and management: sleep clinic location finder.
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