Website survey

December Survey: Sleep Disturbance

Basic information from the MEA on sleep disturbance in ME/CFS

Results of the survey

Total Entries: 955

Unrefreshing sleep is a key diagnostic feature of ME/CFS. What type of sleep problems do you have?

Choice
Percent
Total
None - no problems with sleep
0%
3
Unrefreshing sleep
92%
883
Difficulty getting off to sleep
62%
592
Frequent wakening during the night
69%
659
Early morning wakening
40%
383
Sleep reversal - awake at night; sleeping during the day
26%
249
Hypersomnia - increased sleeping
34%
329
Restless legs syndrome
34%
325
Myoclonic jerks
26%
253
Sleep paralysis
10%
100
Sleep apnoea
10%
98
Vivid dreams
50%
481
Other sleep problem
12%
115
  1. Sleep disturbance, which nearly always leads to unrefreshing sleep, is a key diagnostic feature of ME/CFS
  2. It can occur in different forms: requiring excessive amounts of sleep/hypersomnia (which is quite common in the very early post-infectious stage), difficulty in getting off to sleep, erratic sleep with frequent wakening in the night. It can sometimes involve a reversal of normal sleep rhythm so that people are awake at night and then try to sleep during the day.
  3. It can also involve vivid dreams and what is called restless legs syndrome.
  4. Some types of primary sleep disorder – eg sleep apnoea – can produce ME/CFS like symptoms. So the clinical assessment by a doctor should always include a proper history of any sleep problems and possibly an Epworth sleep questionnaire.
  5. Management of sleep disturbance should take account of the type and severity of the problem. This should always involve various self-help strategies and sometimes the use of a hypnotic drug treatment
  6. There are several drugs that may be of help here – including a short (2 to 3 weeks) course of a short acting hypnotic (eg Zopiclone) for people who are having difficulty in initiating sleep and the use of low dose of a sedating antidepressant drug called amitriptyline. Melatonin is another form of treatment that may be an option where there is a more severe disturbance in sleep rhythm. The previous (2017) NICE guideline stated that 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. The new NICE guideline makes no recommendation – due to lack of any evidence from clinical trials,
  7. The MEA Ramsay Research Fund has funded research into both cause and management of sleep disturbance. Summaries of this research can be found in the 2022 MEA purple book. There has also been an MRC funded research at Imperial College in London (Professor David Nutt et al) into the use of a drug called sodium oxybate. The results have not yet been published.
  8. The MEA has an information leaflet covering all aspects of sleep disturbance, including melatonin/Circadin, and one covering amitripyline for use in pain and sleep disturbance, we also have a leaflet covering restless legs syndrome
  9. There are NHS ‘sleep clinics' where people with more severe sleep disturbances can be referred by their GP for help with both diagnosis and management.

Dr Charles Shepherd,
Trustee and
Hon. Medical Adviser
to the ME Association.

Dr Charles Shepherd
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