In narcoleptic sleep disorders, people feel excessively sleepy during the day, and may also fall asleep at inappropriate times. Treatments now consist of trying to improve the quality and depth of their sleep to restore the disrupted sleep pattern. But perhaps these therapies might also be helpful to people with ME/CFS? The question is pertinent because, while problems with sleep are not the cause of most cases of ME/CFS, they are certainly a major contributor to the pain and suffering experienced. For instance, one investigation of the prevalence and severity of symptoms in 1,578 ME/CFS patients found sleep disturbance reported by 91.9% of the group with a high level of severity.

Researchers from a Neurology department in Michigan reviewed the case records of 118 patients who had been referred to their practice over a 5-year period for a range of conditions, from neuromuscular disorders to complaints of weakness and myalgia. Diagnoses of ME/CFS or fibromyalgia were made retrospectively, after review of their case histories.

All patients had undergone polysomnography (monitoring of body functions during sleep), a multiple sleep latency test (which measures how fast people fall asleep) and measurement of human leukocyte antigen (a protein known to be associated with narcolepsy). Based on these tests, 40% of patients met the criteria for a ‘narcoleptiform sleep disorder’, while many of the others had features that suggested the condition. Approximately 70% of patients were subsequently treated with sodium oxybate, which is a general anaesthetic commonly used to treat narcoleptic sleep disorders. Of these, three-quarters experienced significant relief of their fatigue; 60% experienced some degree of pain relief; and over half had relief of both their fatigue and pain.

While sodium oxybate itself it not a long term solution to the sleep problems of ME/CFS patients — it has been associated with adverse effects and addiction — the findings point to the need for treatment aimed at disrupted sleep in a range of chronically ill patients, including those meeting the definition of ME/CFS.

Reference: Treatment of the narcoleptiform sleep disorder in chronic fatigue syndrome and fibromyalgia with sodium oxybate. Spitzer & Broadman. Pain Pract 2010 Jan-Feb; 10(1): 54-9.