Most people would agree that good, solid sleep is
essential to recovery, or stability, in ME/CFS. Some doctors talk some about sleep, some not at all.. My idea has always been – Correct the sleep and set the
stage for recovery or betterment. This is easier said than done.
One basic question is how do you get objective
information on sleep quality? If the patient is able to move, one could have a sleep
study done. But this is only a short cross-section slice of a big picture and it is difficult to do
every night. Believe it or not, sleep studies are different on back to back
nights. To be really effective, you would have to do a string of
them and maybe every month.
So - what is the next best option, something that
is a little more practical? My son Peter bought his sister a Beurer SE80, a home use sleep sensor. This
sensor is one of a number that are on the market. All of these type of sensors
use movement, respiration and pulse in tracking a patient’s sleep. There are
more sophisticated items coming down the line. It is a rapidly moving field so
one needs to pay attention.
The Beurer SE80 is a six-inch flat disc, placed
under a mattress, near the heart of the patient. It is plugged into the wall.
It records its information on a device - an IPhone or IPad or other - via
Bluetooth. The recording device has to be within 25 feet of the sensor. Various
reviews of the Beurer SE80 complain about the program, that it doesn’t archive,
blah, blah, blah. In my opinion, it generally records and makes available the
necessary information. It is not perfect, but it is very useful.
The sensor is turned on when the patient is
about to go to sleep. The sensor detects when the patient falls to sleep. The
sensor tracks when the patient is asleep, when the patient is awake, or away from the sensor (out of range,
from movement or getting out of bed). Through movement, breathing and
heart rate, the sensor calculates (guesses at?) estimates of deep sleep or Slow Wave
Sleep, REM and what they call light sleep. It gives results both in a
percentage and time breakdowns. It tracks average overnight heart
rand respiratory rate
In the roughest sense, one can get an idea when
the patient goes to sleep, how long they sleep, when they awake, when they get
out of bed, when they go back to sleep and when the sensor shuts off. On a good
night, a patient might turn the sensor on at 11, go to sleep at midnight, move
immediately into slow-wave sleep, cycle through periods of REM, and wake up.
The time awake is noted and records when the patient goes back to sleep. My
particular patient sleeps in stages, first sleep, second sleep and often third
sleep (in the morning). Certainly, everyone is different in this regard.
The first question one might ask is how accurate
is this device? How accurate especially are the deep sleep and REM categories?
To this I can only answer, I do not know.
However, like with pedometers, I have learned to
pay more attention to consistency or predictability than accuracy. It you wear
a pedometer - like the Fitbit - every day, day after day, one gets the sense of
consistency and reliability. Anyone with this illness who is able to move
should be on a Fitbit pedometer. It is the only objective device available to
ME/CFS patients, a device that will track regression and improvement. I
remember standing in astonishment with the tall Rituxamab fellow, as he laughed
at my suggestion to use a pedometer on his Rituximab patients. His first argument
was that it was too expensive. Then he said that it wouldn’t work. I just
turned away, wondering where this guy left his brain?
We started using the Beurer sensor a year ago
now, using it every day. About 10% of the time it does not record all night,
for various reasons – thunderstorms, internet or Bluetooth failure, low
battery - and sometimes for no apparent reasons.
Over this time, a year, I have gotten a pretty
clear picture of my patient’s sleep, both in its ups and downs. 400 sensor
reports gives you a feeling of what is going on. With the information gathered
from this sensor, I seek means for achieving improved sleep.
Next up, some idea about sleep betterment in ME/CFS.
Next up, some idea about sleep betterment in ME/CFS.
