Dr. DeMeirleir’s fourth video in ME/CFS Vereniging’s (ME/CFS Association) ‘Science for Patients’ video series is on sleep. Like the others in the series, the production values are excellent and a dialog box provides an English translation.

Dr. DeMeirleir continues the ME/CFS Association's Video Series with ME/CFS experts with a Talk on Sleep

Dr. DeMeirleir continues the ME/CFS Association’s Video Series with ME/CFS experts with a Talk on Sleep

Dr. DeMeirleir starts off with the interesting fact that at the beginning of the illness most people with chronic fatigue syndrome (ME/CFS) feel that they sleep too much, but over time they often end up being unable to get refreshing  (deep ) sleep and wake up more and more during the night; ie, the heavy sleep or hypersomnia early in the illness transitions to fitful light sleep over time.

A researcher and clinician Dr. DeMeirlier focused on the research end first. He believes the sleep problems start with the over-production of a cytokine, IL-6 , known to be triggered by infections, which causes increased sleepiness.  In a kind of a cascade effect, another cytokine called IL-10 apparently tries to tamp down the inflammation caused by IL-6… and causes more sleep problems.  Thus, De Meirleir believes sleep-deprived ME/CFS patients have problems caused by (a)  the immune response to the initial infection and (b) the immune response to the immune response (:)).  (Sometimes you just can’t win.

This scenario of the body simultaneously trying to fight off an infection AND trying to reduce the inflammation caused by that fight, has shown up in several studies. ( The way out of this mess is to resolve the infection or, if that is not present, to fix the disturbed homeostasis the infection left behind. We haven’t gotten to that video yet, though :))  Dr. De Meirleir, by the way,  believes the infection is still present.

The cytokines are not the only bad actors. In a rather bizarre twist, De Meirleir stated that precipitous drops in blood pressure during sleep (to 80/65 in some patients) worsen the low brain blood flow problems normally present,  apparently depriving the brain’s sleep centers of blood.

There are no easy answers; in this disorder, several different factors can come into play for each patient and it’s this heterogeneity that is responsible,   De Meirleir believes, for the mostly inconsistent sleep study results. Not happy with the extent of the sleep studies done this far, De Meirlier noted that no thorough sleep studies involving twins had been done. ( Dedra Buchwald’s twin sleep studies found no differences in EEG/delta wave patterns, a blunted slow wave response to a sleep challenge, normal sleep architecture, and increased stage 3 sleep. The studies, however, were small and perhaps not thorough enough).

There was some good news. Dr. DeMeirleir noted that abnormal EEG and delta wave patterns (also seen in fibromyalgia) and low stage 3 and 4 sleep,  suggested a way forward for treatment. The delta wave patterns have been one of the clear, objective pieces of objective evidence for the sleep problems found in ME/CFS, and De Meirleir noted, interestingly enough, they’d validated a treatment approach over the past twenty years; using short-acting anti-epileptic drugs rather than standard sleep drugs for sleep. He stated sleep drugs might increase sleep duration but they have little effect on measures like REM, time in stage 3 sleep,  etc. which affect the quality of sleep.

The upshot on the treatment end for Dr. De Meirleir is to use anti-convulsant drugs to smooth out the delta interruptions present and stay away from sleep drugs.

To end up the video, De Meirleir pointed out the fascinating ‘problem’ many ME/CFS patients have of feeling better at night – so much better that they put off bed-time a bit more and more every evening until some people end up having dinner at 3 AM in the morning…and sleeping through the day, throwing them out of rhythm with their families and the rest of humanity.

It’s an understandable problem; who, after all,  wants to go to bed when you’re finally feeling a bit better? But it’s not a great recipe for maintaining as normal a life as possible.

This was another intriguing video from ME/CFS Vereniging in what looks to be a fascinating series. How interesting it would be (hopefully will be)  to get as many ME/CFS experts before the camera as possible and then compare their insights.




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