This document discusses sleep disturbances in ME/CFS and fibromyalgia. It notes that sleep issues are included in the diagnostic criteria for both conditions and are present in over 90% of patients. Unrefreshing sleep is the most commonly reported symptom. Polysomnography can show increased light sleep and fragmentation, though results may be affected by sleep study conditions. Primary sleep disorders should be ruled out. Monitoring devices like FitBit and Oura Ring can help patients track sleep quality and disruptions at home. Lifestyle changes, relaxation techniques, and medications are recommended to achieve more restorative sleep.

2. SLEEP DISTURBANCES
ME/CFS and FM
Lucinda Bateman MD
Bateman Horne Center
2018

3. General Principles of Supportive Management:
• 1) Address all other conditions (complete a good
medical work-up)
• i.e. anemia, thyroid, diabetes, sleep apnea, low Vit B12
• 2) “Pace” to prevent symptom escalation (Preventive
activity management. Reduce overload)
• 3) Address the major aspects of illness
• PAIN: reduce severe pain
• SLEEP: achieve restorative sleep
• MENTAL HEALTH: insight and support
• FITNESS: engage in restorative exercise
PAIN
SLEEP
MENTAL
HEALTH
FITNESS

4. Alternate "new" Fibromyalgia Criteria (ACR 2010)
1) Widespread PAIN index (WPI)
(0-19 points—see next slide) 7+ or 3-6
2) Symptom Score (SS): 0=none, 1=mild, 2=mod, 3=severe
Chronic fatigue (0-3)
Unrefreshing sleep (0-3)
Cognitive complaints (0-3)
Multisystem complaints (0-3)
Max SS = 12 5+ and 9+
FM FM
> 3 months in duration and without other apparent explanation
Wolf F, et al. The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia
and Measurement of Symptom Severity. Arthritis Care & Research. Vol. 62, No. 5, May 2010, pp 600–610

5. ME/CFS Clinical Diagnostic Criteria:
These CORE 4-5 criteria are required for diagnosis, must be moderate-severe,
frequent in occurrence (present >50% of time) and not otherwise explained by
another condition.
1) Impaired function related to exhaustion/fatigue/fatigability (physical and
cognitive)
2) PEM: post exertional malaise (illness relapse or worsening after activity)
3) Unrefreshing sleep
4) A. Cognitive impairment and/or
B. Orthostatic intolerance/autonomic dysfunction
Other common features of illness include:
---Pain: including significant overlap with FM as currently defined
---Immune or infection manifestations (allergy, inflammation, etc)
---Neuroendocrine dysregulation (brain regulation of hormones)

6. Unrefreshing sleep
• Sleep disturbances are common
• Included in all CFS ME/CFS, ME and FM case
definitions or symptom criteria
• Present in >90% of all diagnosed
• Sleep abnormal in:
• Quality (light, restless, interrupted, heavy)
• Duration/timing (delayed, prolonged, irregular)

7. Central Sensitivity disturbs sleep
• Pain amplification/hyperalgesia (FM): pain disrupts sleep*
• Sensory amplification in ME/CFS/FM:
• Noise. Bright light. Temperature.
• Central “overload” PEM disturbs unravels normal sleep
• Tired but wired
• Too exhausted to sleep
• “oversignaling”
*Modofsky 2008

8. “Unrefreshing sleep” is the most
consistently reported symptom of ME/CFS
This includes sleeping too much or too little, trouble falling
asleep, light sleep and frequent awakenings, trouble
getting back to sleep, early morning awakening, trouble
waking up after finally getting to sleep, need for naps and
irregular sleep cycles.
pwMECFS spend more time in bed
and have less quality sleep*
*Morris 1993

9. 300 Dutch CFS patients*
(those with primary sleep disorders excluded)
Four types of sleep presentation (1 PSG):
• sleep time REM (catch up sleep?)
• REM (drugged sleep?)
• #arousals/hour (disrupted sleep?)
• sleep REM (insomnia?)
*Gotts 2013

10. Observing/Monitoring sleep
• Polysomnography---$$$ and good for some observations.
“Sleep lab artifact” can be high and is often ignored.
• Home sleep study---new
• Pulsoximetry overnight---only records oxygen levels
• You should monitor your own sleep!
• Fitbit or other self monitoring devices
• Ouraring (ouraring.com)

11. Polysomnography (PSG)
• PSG reveals Primary Sleep Disorders
• PSG non-diagnostic in ME/CFS/FM* but…
• Increased alpha (dozing, light sleep)
• Decreased delta (slow wave, deep sleep)
• Fragmentation
• Delayed onset
*Cunnington 2011, Togo 2008, Neu 2009, Manu 1994, Jackson 2012

12. http://www.unc.edu/~ejw/sleepEEG.html

13. Primary Sleep Disorders
• Central sleep apnea
• Obstructive sleep apnea
• Movement disorders (RLS, PLMD)
• Narcolepsy
Cause severe sleep disruption,
somnolence, fatigue and other symptoms.
Primary sleep disorders are illnesses commonly seen in ME/CFS/FM patients*.
*LeBon 2000

14. Hypnograms (diagram of sleep stages)
two examples of ‘”normal” sleep cycles or stages
Graphic representations of
sleep stages recorded EEG
during polysomnography
EEG leads

15. OSA (obstructive sleep apnea)
hypnogram---on and off CPAP

16. Somnolence may be more treatable
• Sleep deprivation (all causes)
• Medications
• Illness (neurologic, endocrine, inflammation)
ESS (Epworth Sleepiness Scale) helps identify sleepiness vs fatigue
sleepy tired
Primary sleep disorders
cause somnolence

17. Polysomnography (PSG)
• You can read your own hypnogram if you have undergone
PSG. But it represents only one night and might not represent
your sleep stages at home.
• Many people sleep lightly, with more disturbances or
discomfort during PSG compared to sleeping at home.
• This is “sleep study artifact”
• The best way to study sleep is to record many nights

18. FitBit or equivalent monitoring devices
• Records hours of “sleep”
• Documents the number of disruptions
• Not very good at identifying what causes the
disruptions
• Only estimates sleep stages

21. Oura Ring

22. Activity. Sleep. Readiness

26. Investigate and improve your own sleep
• "Unrefreshing sleep" may come from sleep that is
abnormal and not restorative
• Dysregulated sleep is insidiously destructive over time.
• Use every healthy method possible to achieve
"restorative sleep"
• Develop skills in relaxation and understand
medications

27. Develop better communication
about sleep
•SLEEP 0 1 2 3 4 5 6 7 8 9 10
•MOOD 0 1 2 3 4 5 6 7 8 9 10
•PAIN 0 1 2 3 4 5 6 7 8 9 10
•HEADACHE 0 1 2 3 4 5 6 7 8 9 10
•FATIGUE 0 1 2 3 4 5 6 7 8 9 10
•FUNCTION 0 1 2 3 4 5 6 7 8 9 10
☺ ☹

28. Sleep disruptions are varied
0123 Can’t go to sleep
0123 Restless sleep
0123 Wake up too early
0123 Can’t go back to sleep
0123 Need too much sleep
0123 Need to take naps
0123 Unrefreshing sleep
0123 Restless legs
0123 Leg cramps
0123 Myoclonic jerks (involuntary jerking of limbs)
0123 Snoring
0123 Stop breathing during sleep
28
0= none 1= infrequent 2= moderate severity or frequency 3= severe or frequent

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Address reversible sleep disturbances:
• Reduce caffeine, alcohol, decongestants, stimulants
• Avoid ACTIVATING the brain before bed (bright screens included)
• Learn and become skilled in deep relaxation techniques.
• Treat Restless Legs Syndrome (RLS), myoclonus and Periodic Limb
Movement Disorder (PLMD).
• Treat Obstructive Sleep Apnea (OSA).
• Address Central Sleep Apnea.
• Reduce medications that cause CNS depression

33. Additional Recommendations:
• Improve sleep hygiene (routine timing, environment).
• Identify medications that might adversely impact sleep
• Daytime activity. Get physically tired---but not exhausted, “wound up” or relapsing (PEM).
• Be wary of long or late naps.
• Minimize sedating drugs during the day.
• Aim at all the CAUSES of sleep disruption vs just being “drugged” to sleep
• Simplify use of medications and use them skillfully
• Sleep onset? ...wind down, establish cycles, short acting drugs, earlier dosing of longer acting sedating
medications
• Light sleep and frequent awakening? …reduce interruptions, low dose longer acting meds
• Early morning awakening? …med rebound or withdrawal? Too much sleep? Depression?

34. Don't give up because
achieving restorative sleep
is a constant battle.
More restorative sleep improves
fatigue, cognition, pain and mood.

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Drugs used for sleep disturbances:
Longer acting sleep “sustainer” examples used off-label for sleep:
*TCA: amitriptyline (10-20 mg), doxepin (5-20 mg)
Other antidepressants: trazodone 25-100 mg, mirtazapine 7.5-15 mg
*Anticonvulsants: gabapentin 300-1200 mg, topiramate 25-100 mg
Benzodiazepines: clonazepam, lorazepam 0.5-1 mg, temazepam 15-30 mg
Neuroleptics: quetiapine 12.5-50 mg, olanzapine 2.5-5 mg
These longer acting drugs may cause “hangover” symptoms
the next morning if dosed too high or taken too late in the evening.
Choose a sleep medication based on comorbid conditions and the nature of the
sleep disturbances.
*additional benefits for pain

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Drugs used for sleep disturbances:
Sleep “initiators” or hypnotics
FDA approved for insomnia, not specifically for FM or ME/CFS
zolpidem 5-10 mg (approx 4 hours, CR 6 hours)
zaleplon 5-10 mg (approx 2 hour duration)
eszopiclone 1, 2 or 3 mg (approx 6 hour duration)
benzodiazepines, ex: triazolam 0.125-0.25 mg (tolerance/habituation)
• Chronic use discouraged, and thus problematic for chronic insomnia
• Tolerance or dependence typically develops.
• Better for sleep initiation than to sustain sleep all night.
• Better for PRN use rather than nightly use
*may prove different than other sleep agents

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Drugs used for sleep disturbances:
Belsomra/suvorexant.
An orexin receptor antagonist (suppresses wakefulness)
May prove different than other sleep agents
No generic available so cost is higher.
*

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PAIN
SLEEP
MENTAL
HEALTH
FITNESS
ORTHOSTATIC INTOLERANCE…
FATIGUE
& FUNCTION