Treating Chronic Fatigue Syndrome (ME/CFS): Assessing Sleep – Sleep Studies
Dr. Levine, Klimas and Dr. Bateman have all endorsed sleep studies. In sleep studies patients are given a room to sleep in, hooked up to various machines and then monitored as they sleep. Because sleep studies can be expensive – costing as much as $2,000 – patients may wish to get preauthorization from their insurance company before doing one. A group of ME/CFS physicians recommended that the clinicians use a good sleep questionnaire (such as the Pittsburgh Sleep Quality Index) to determine whether a sleep study would be effective. (If a sleep study is not feasible’ Dr. Teitelbaum recommends doing a ‘home sleep study‘ (see below).
A Sleep Disorder – Not Chronic Fatigue Syndrome (ME/CFS) – Sleep studies indicate that about 20% of ME/CFS patients have a primary and treatable sleep disorder – not ME/CFS. These patients can be rapidly treated and cured.
Other than consistently finding unrefreshing sleep, sleep studies of ME/CFS patients have had mixed results. Some indicate ME/CFS patient have disturbed ‘sleep architecture’ (i.e. too little REM or deep sleep’) while others have not. Several recent studies finding evidence of increased sympathetic nervous system activation suggest that ME/CFS patient may never really relax when they sleep. Dr. Bateman notes that the commonest findings in ME/CFS sleep studies are movement disorders, jerking, and wiggling, and needing to move. With this kind of problem she says “You wake up all night long, but never enough to know you have a problem; that creates daytime sleepiness.”
Ken Friedman a ME/CFS researcher and advocate recently reported that a sleep study indicated his daughter woke up ‘hundreds of times’ a night. He was able to use the results of this study to adjust her therapy and improve her quality of life.
Sleep Study Recommendations. Dr. Klimas recommends that patients see a neurologist rather than a pulmonologist for their sleep study because ‘pulmonologists are usually looking sleep apnea and study results don’t show that’s the kind of dysfunction that CFS patients have.” Dr. Teitelbaum notes that sleep studies should include an EEG to provide sleep stage data, waking and total hours of sleep, respiratory monitors to measure airflow and blood oxygen and checks of leg movement (restless leg syndrome) and upper airway resistance syndrome (UARS). He also recommends that ME/CFS patients stay on their sleep medications while they do the study. “If money is an issue patients can do a ‘split-night’ study in which the sleep technicians look for sleep apnea in the first half of the night and try to fix it in the second.
A Do It Yourself Sleep Study – Videotaping yourself while you sleep can’t tell if you have upper airway resistance syndrome (UARS) but it can tell if you snore, if you stop breathing at times or if you have move around a lot at night (have restless leg syndrome). If none of these are evident then sleep disordered breathing may not be a problem for you.
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Lucinda Bateman, MD., 2006. “Tips and Travails of Treatment”, An abridged version of a seminar transcript of a Nov. Lecture in Auckland, New Zealand, by Pat Fero and David Thompson
Jacob Teitelbaum, 2007. From Fatigued to Fantastic. Avery Publishers.