Sleep problems are one of the most common complaints among people with Myalgic Encephalomyelitis (ME).
Sleeping Girl, Domenico Fetti, c. 1615 |
ME are differentially affected by poor and unrefreshing sleep. Sleep disturbances and insomnia are very common, with a pattern of restlessness and difficulty in falling and remaining asleep. Regardless of the number of hours slept, sleep is usually not restorative in ME, meaning that people wake up exhausted and without energy rather than refreshed. This is likely due to an insufficient amount of the deepest and most restorative type of sleep.
What Sleep Issues Affect a Person with ME:
- Hypersomnia
- Insomnia
- Lucid Dreaming
- Sleep disruption - frequent awakening
- Short duration sleep
- Unrefreshing sleep e.g. awaken feeling exhausted regardless of duration of sleep
- Day-time sleepiness
- Poor quality sleep
- Sleep apnoea
- Nightmares
- Vivid dreams
- Inability to stay awake during the day
- Difficulty getting to sleep at bedtime
- Difficulty waking up in the morning
- Waking for long periods
- Awaking much earlier than before illness onset
- Sleep reversal (e.g. sleeping from 4am till noon)
- Phase shifting (hard to fall asleep until early morning hours)
- Circadian Rhythm shifting
- Oversleeping
- Feeling "tired but wired"
- Restless legs
- Sleep paralysis
- Increase in pain
- Intense dreams
- Unrefreshing sleep
- Snoring, gasping or choking happens during sleep
- Feeling like you need to move when you relax (movement relieves this feeling)
- Feeling like you can’t move when you wake up
- Daytime sleepiness; you take frequent daytime naps or fall asleep easily
How the Person with ME may feel:
- Exacerbation of illness severity and symptoms which in turn can worsen sleep problems
- Worsening PENE, i.e., the atypical post exertional neuroimmune response
- Reduced pain threshold therefore widespread pain worsens
- Disoriented
- Mentally blank
- Not alert
- Brain fog
- Extremely unwell and exhausted so some people may need to sleep through the day
- Hungover without drink or other stimulants taken
- Hypersensitive
- Worsening cognitive issues with trouble concentrating the most commonly reported symptom, as well as other symptoms such as short-term memory, attention, and processing
- Behavioural changes as a result of the difficulties focusing or paying attention
- Mood changes like irritability and trouble managing negative emotions, thoughts and behaviours
- Lower reaction times making accidents more likely to happen, e.g., frequent accidents or falls
- Depression
- Obesity
- Type 2 diabetes
- Heart disease
- Dementia
How to Treat Sleep Issues
alcohol, soda, decongestants, tobacco, alcohol, chocolate, heavy meals. - Reduce naps after 3pm. However, sleeping when needed in ME takes priority; listen to the body and rest or sleep when needed. Sleep dysfunction and an inability to produce sufficient energy on demand makes it essential that low energy reserves are not depleted. - Create a comfortable sleep environment: quiet, dark, suitable temperature, comfortable bed linen. Make sure that light, noise and temperature are set at the best for you and for good sleep. This might take some time to get right. Some might want it warm, others cooler at different times and depending on the seasons.
Some guideline authors argue that primary sleep disorders should be treated as co-morbidities, and their presence should not preclude a diagnosis of ME, however symptoms in ME are clearly distinct from those of primary sleep disorders, and the illness is more than simply a somatic expression of an underlying sleep disorder or sleepiness. It is important to make sure that you have no underlying sleep conditions e.g., sleep apnoea or restless legs which should be addressed.
- You regularly have trouble sleeping.
- You feel tired during the day even though you slept for at least seven hours the night before.
- It becomes difficult to perform regular daytime activities.
What are the Major Categories of Sleep Disorders?
- Insomnia: You have difficulty falling and staying asleep.
- Sleep-related breathing disorders: Your breathing changes while you sleep.
- Central disorders of hypersomnolence: You have trouble feeling alert during the day.
- Circadian rhythm sleep-wake disorders: Your internal clock makes it difficult to fall asleep and wake up on time.
- Parasomnias: Physical actions or verbal expressions happen during sleep like walking, talking or eating.
- Sleep-related movement disorders: Physical movements or the urge to move makes it difficult to fall asleep and/or stay asleep.
What are the Types of Sleep Disorders?
There are many different types of sleep disorders. The most common include:
- Chronic insomnia: You have trouble falling asleep or staying asleep most nights for at least a few months and feel tired or irritable as a result.
- Obstructive sleep apnoea: You snore and have moments during sleep when you stop breathing that disrupt your sleep.
- Restless legs syndrome: You have the urge to move your legs when you rest.
- Delayed sleep phase syndrome: You fall asleep at least two hours after your desired bedtime and have difficulty waking up.
- REM sleep behaviour disorder: You act out your dreams while in the rapid eye movement (REM) stage of sleep.
What Causes Sleep Disorders?
disease, asthma, pain, or a nerve condition.
What are the Risk Factors for Sleep Disorders?
Diagnosis and Tests
that electronically transmits and records specific body and brain activities while you sleep. A healthcare provider will analyse the sleep study data to determine whether or not you have a sleep disorder. Overnight sleep studies give a more thorough assessment of sleep issues. They are attended by a sleep technologist and capture many more signals, including brainwaves for sleep, muscle tone, and leg movements.
What Questions Will My Healthcare Provider Ask Me During an Exam for Sleep Disorders?
What Questions Should I ask My Healthcare Provider?
What Medications Treat Sleep Disorders?
Restless legs syndrome: Medication like gabapentin, gabapentin, pramipexole, or pregabalin.
How do I Get Better Sleep?
Can Sleep Disorders Be Prevented?
How Long Do Sleep Disorders Last?
months. Others may need to manage the condition throughout their lifetime. Talk
to your healthcare provider about your specific outlook.
Research - Some Key Findings re Sleep Issues in ME
- As per study on PEM in ME which includes feedback on sleep - 'Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME): A Patient-Driven Survey' (2019) by Leonard Jason et al:
95% of study participants experience the symptom of unrefreshing sleep; 87.3% experience insomnia; 82.1% experience physically fatigued while mentally wired; 54.4% experience excessive sleep - all based on an assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) where participants were asked to evaluate a list of symptoms that are exacerbated following physical and/or cognitive exertion.
Details from table 4. of a study Leonard Jason and others held. Table 4. hereFull study ''Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME): A Patient-Driven Survey" here
- As per study ‘Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS’ (2017) by Jain, Kingdon, Nacul et al:
ME patients aged over 50 were more than three times more likely to experience severe sleep symptoms compared with those less than 30 years old. The reason for older age causing more severe symptoms are complex but may be partially due to age-related decreases in brain dopamine activity contributing to impaired performance on tasks that involve frontal brain regions.The pathophysiological processes occurring in ME may exaggerate normal age-related processes. For instance, Xenon-computed tomography blood flow studies show significantly lower cortical/cerebellar regional cerebral blood flow (rCBF) in ME are complex but may be partially due to age-related decreases in brain dopamine activity contributing to impaired performance on tasks that involve frontal brain regions.The pathophysiological processes occurring in ME may exaggerate normal age-related processes. For instance, Xenon-computed tomography blood flow studies show significantly lower cortical/cerebellar regional cerebral blood flow (rCBF) in ME.Sleep symptoms were more common in ME patients than in MS patients and healthy controls.
Research has demonstrated that sleep physiology is altered in ME patients, but management of the condition, and available pharmacological therapy, still fails to address this critical issue. Future research must explore both pharmacological and non-pharmacological methods aimed at improving quality and duration of sleep in ME.
The most commonly reported severe symptom in both groups was unrefreshing sleep: 55.3% in the ME group, compared with 27.7% in the MS group. The number of MS patients reporting severe non-sleep related symptoms was relatively low (ranging from 2.1 to 6.4%), compared with the ME group (ranging from 13.1 to 31.6%).
The study also found that the classic ME symptoms of sleep disturbance and trouble concentrating were most commonly reported as severe compared to other symptoms.
Unrefreshing sleep, or sleep of poor quality or short duration were the most commonly reported severe symptoms in both the ME and MS groups.
The study results found a relationship between smoking habits and severe cognitive and sleep symptoms in ME. This is of clinical importance as it suggests that stopping or preventing smoking may help reduce the risk of developing more severe symptoms in such patients.
- As per study ‘Sleep disturbance in chronic fatigue syndrome’ (1993) by Krupp et al: the sleep characteristics in 72 patients with ME compared with 57 MS patients found that the ME patients experienced significantly more sleep disturbance compared with MS patients. Among the ME patients, 37% reported light sleeping, 15% reported inadequate sleep, and 27% reported early waking, compared with 10, 5, and 0% respectively for the MS group.
- As per the Canadian Consensus document (2003): “Cognitive symptoms including confusion, slowed processing of information, difficulty concentrating, poor short-term memory, and sleep problems are common in ME.”
- As per the International Consensus Primer (2012) page 7, B. Neurological Impairments: 3. Sleep Disturbance:
- Disturbed sleep patterns: e.g. insomnia, prolonged sleep including naps,sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares- Unrefreshed sleep: e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness
- As per study ‘Circadian rhythm abnormalities and autonomic dysfunction in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis', (2018) by Cambras et al: Energy level, activity, alertness, and mood all follow daily circadian rhythms in healthy people. Individuals with ME show irregular activity patterns with decreased total activity, lower activity rhythm amplitude, and less stable rhythms. Fatigue and inactivity in the context of ME may be both a cause and effect of circadian disruption.