The NICE guideline for M.E./CFS says sleep management “includes techniques such as sleep hygiene […] and changes in environmental conditions which can be introduced to improve the quality of sleep.
Following a last-minute pause to its planned August publication, NICE has confirmed that its 2021 guideline for M.E. will be published w/c Monday 25 October. We will update our online information about the guideline, and share free resources to help people with M.E. and their health professionals understand key changes, as soon as possible.
Writing in our membership magazine, InterAction, Action for M.E.’s Medical Advisor, Dr Gregor Purdie, offers the following advice:
People with M.E often report sleep problems, ranging from oversleeping (hypersomnia) to insomnia to sleep apnea (a sleep disorder that occurs when people’s breathing is interrupted during sleep).
The type of sleep problem encountered varies from person to person, and can change over the course of the illness. Hypersomnia is generally noted to be more of a problem in the early days of the illness.
Further studies into the sleep problems of people with M.E. are needed before specific, formal guidance can be developed. In the meantime, there is a series of general NHS recommendations known collectively as “sleep hygiene.” Some are of value to people with M.E., some less so, particularly if they are bed-bound and unable to follow guidelines about not using bed apart from for night time sleep and intimacy.
- Sleep at regular intervals. This is standard advice to encourage getting into a regular sleeping pattern. However, this can be problematic for people with M.E., who need to respond to fluctuating energy levels. One person told us: “I was told to avoid sleep during the day and use, as frequently as required, regular restorative relaxation. You can’t store sleep for the following week.”
- Make sure you wind down. Advice is to consider having a warm bath before bed. This brings the body temperature to the right level for falling asleep. However, not everyone with M.E. can tolerate warm baths. Some find it helpful to write lists for the following day, do relaxation exercises, read a book or listen to relaxing music or talk radio. The important thing is to do something that helps you wind down, so you are not feeling stressed at bedtime.
- Make your bedroom “sleep-friendly.” Advice is that the bedroom should be a relaxing environment, associated with sleeping - as opposed to working, watching TV, etc. There can be increased difficulties sleeping after using screens that emit ‘blue light’, such as TVs, laptops and mobile phones. Switching them off two hours before bedtime can be beneficial in getting off to sleep. Bedrooms for sleep at night should be dark, quiet, tidy and ideally kept between 18° and 24°C. Also make sure you have a supportive, comfortable mattress and pillows.
- Other remedies. People with M.E. often report that they feel "tired but wired". Although physically exhausted, their system is still fully alert. Standard advice then is to get up out of bed, and do something relaxing. Go back to bed when feeling sleepy. Distraction can be helpful; there are many suggestions online for techniques to help with it. White noise can be helpful if you are living in an area where noise can’t be avoided. The important thing is to switch the mind off from stressful thoughts and promote relaxation. Meditation can be most helpful in this situation, and can be practiced through self-hypnosis or mindfulness for example. There is a wide range of meditation CDs on offer, and many free, guided meditations online, particularly on YouTube.
Medication can play a part in aiding sleep, and can be used as a short-term aid to kick-start the process of improving sleep.