Question

Like most people with ME I wake up each day, even after a good night’s sleep, not feeling any better than when I went to bed and sometimes even worse. So I can understand why unrefreshing sleep, often combined with various other sleep disturbances, is a key diagnostic feature of ME. But do we know about why people with ME have such unrefreshing sleep?

Answer

Sleep has always been regarded as a restorative process, making you feel energised and refreshed the following day. Modern science has shown that during sleep the immune system, endocrine (hormone-producing) system and the cardiovascular system all experience some degree of restoration.

Unfortunately, if you have ME/CFS sleep no longer appears to have this powerful restorative function. Even those who manage to have six hours or more of uninterrupted sleep each night still feel unrefreshed. They may have plenty of sleep but they aren’t receiving one of the main benefits of sleep.

Non-restorative sleep (NRS), the medical term for unrefreshing sleep, basically describes poor quality sleep that fails to refresh and we know from research into sleep that people with NRS score lower on daytime tests of vigilance and motor skills and are more likely to describe themselves as having pain or fatigue.

They are also more likely to have fragmented sleep – even if they don’t know it because polysomnograms (where electrical activity in the brain during sleep is measured) show regular mini or micro-awakenings. Otherwise, polysomnography often shows very similar patterns to those of normal sleepers.

Not surprisingly, NRS can also result in daytime sleepiness – even in people who apparently have no problem falling or staying asleep.

Unfortunately, nobody has found an effective form of drug treatment for NRS. The so-called Z drugs (zopiclone etc) can help people who have difficulty getting off to sleep. Drugs that make a person sleep deeper (such as sodium oxybate) are a possibility but they are not widely used for this purpose. There is also no firm evidence that shortage of slow-wave sleep is a problem for people with ME/CFS who have non-restorative sleep. Daytime exercise, which is obviously difficult or impossible for people with ME/CFS, and a cool room for sleeping appear to be effective for some people.

Non-restorative sleep is a major hidden problem in healthcare – not just in relation to ME/CFS. It is also a very neglected area of research and having funded research into sleep disturbance in the past this is something where the MEA Ramsay Research Fund would welcome a good-quality research grant application.

SEE ALSO: Paralysed by Sleep

More Information:

• MEA information leaflet covering all aspects of the management of sleep disturbance