Sunday, July 23, 2017

Sleep tracking and ME/CFS


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.