Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

By Jo M. Solet, MS EdM, PhD, OTR/L
April 6, 2013      

Adequate sleep duration is 7.5-9.5 hours for adults, 10-12 hours for children.

Consistency in schedule, both bedtime and wakeup, supports the natural cycle of circadian rhythms.

Light is alerting. Morning walks offer well-timed light exposure.

Pace and balance activities in order to maintain a consolidated night sleep period, rather than drifting in and out of sleep throughout the day and night.

Sleep diary or phone app can be used to track bedtimes, time in bed, waking after sleep onset. Plan for time to pay off Sleep Debts, including Social Jetlag, when activities leave you under-slept.

Wind down ritual is helpful before sleep: progressive muscle relaxation, breathing, music. A warm bath encourages sleep within 2 hrs and may moderate FM pain.

Exercise is immediately alerting and produces rise in body temperature. Temperature falls off after about 90 minutes. A cool shower hastens the drop. While night sleep is ordinarily enhanced by exercise during the day, this must be balanced against post-exertional malaise.

Appetite and satiation are altered by limited sleep. Deficient sleep is associated with weight gain and increased pain.

Limit bright screen exposure before sleep since blue light blocks melatonin; this includes back-lit e-readers.

Power naps may consolidate memory, improve alertness and empathy. Timing: 20-30 min or 1.5 hrs  (the latter is a full sleep cycle). Prophylactic nap: Late afternoon before night activity. Anticipate and manage sleep inertia: get slowly vertical and obtain bright light exposure.

Caffeine is best avoided after early afternoon. If used “pharmaceutically”— 20-30 minutes to take effect.

Alcohol is initially sedative, decreases sleep duration and efficiency, suppresses REM, and increases waking after sleep onset—especially in women. Next day alertness is reduced. Alcohol intolerance is very common in CFIDS/ME.

Benadryl inhibits slow-wave sleep and REM. It is sedative but not restorative. It has a long half-life, lasting sleep inertia, rapid tolerance and rebound insomnia.

Seek information about sleep effects of over-the-counter or prescription meds.

Self-awareness is needed to recognize signs of Excessive Sleepiness. Ask for help. Seek alternate transportation: DO NOT DRIVE.

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.