Managing Myalgic Encephalomyelitis

Visible App - a useful tool?

I have been finding the Visible app useful and wanted to share my experience.  This will be about the free part of the app.  They also sell a wearable device which I have not tried.

A few basic facts:

• The app is free

• It tracks heart rate variability (HRV)

• It tracks heart rate (HR)

• It tracks subjective sleep quality score

• It shows trends by tracking info over time

• It offers a morning stability score (that doesn’t always match how I feel)

• It provides a way to track symptoms daily including a place to make a note.  

• Monthly check in to get a FUNCAP27 score

Details explained below.

Our girl Wednesday - keeping an eye on me…

From the website

https://www.makevisible.com/

“Track your health, and advance science with our free research app
Download the free research app, start tracking your illness and enroll in our app-based studies today.  No membership required.”

The app is set up to give input first thing in the morning and last thing at night.  

Measuring HR and HRV in the morning

This is meant to be done once in the morning.  The measurement is done by placing a finger over the camera to measure pulse.  It uses the camera’s flash to shine through the finger.  My phone has multiple camera lenses; I just tried each one to see which one worked.  

The app gives guidance to help get the best reading and it counts down so I know when it will be done.  Because I am doing this in my mostly darkened bedroom, the light from the phone can be overwhelming.  I’ve found ways to minimize how much of the phone’s light is shining into the room and I close my eyes and mentally count up to 100.  

I check my HR and HRV every morning before I take my medication that lowers my heart rate.  I try to take it about the same time and while I’m still resting.  It took me a little while to get into the habit.  It then took me several weeks to start seeing useful patterns.

The morning HR and HRV reading is only done once.  If there is an issue, the reading can be deleted and redone.  The morning input also includes the quality of sleep measurement.

Symptom tracker at end of day

At the end of the day is the time to track symptoms.  During set-up you decide which symptoms you want to track.  You can add symptoms later as well.  They have some symptoms already listed to choose from plus a way to add additional symptoms.  At the end of the day you can indicate whether each symptom is at the level of “none”, “mild”, “moderate”, or “severe”.  

There is a setting at the top to use previous answers which I have found very helpful.  Since many of my symptoms don’t fluctuate very much, this saves me from having to input responses every time.

Stability Score

I corresponded with Visible when I had some issues with the app.  (I just needed to reload the app).  During the conversation I asked about how the daily score was calculated because it seemed like it wasn’t matching how I felt some days.  I learned that the stability score is based on 90 days of the HR, HRV, sleep score and symptom scores. 

The information helped me to understand that this wasn’t necessarily a score that would reflect how I was doing that day.  It was a stability score based on 90 days of readings.  Since learning that, I have paid more attention to the readout of my heart rate and heart rate variability instead of the score.  Seeing where my HR and HRV land in relation to my 90 day average gives me better insight into how I’m doing.  

Because the average is based on 90 days, as the season is changing from Winter to Spring, I am seeing more low stability scores that don’t match how I feel.  I struggle a LOT when it is Winter/cold.  I struggle to stay warm and the weather often causes me to have a higher pain level.  Both of those cause me to have a higher heart rate.  

So my “normal” heart rate over the Winter has been higher than when it is warmer and the weather is calm.  Recently when the weather turned nicer and I felt a LOT better and my pain levels were down, my stability score was lower than it had been.  Once I saw this lower stability score was because my HR was lower than “normal”, it made sense why my score was lower.  So even though I felt a lot better, my stability score was much lower because my heart rate was lower than it had been for the previous 90 days.

My symptom scores and my sleep scores change very little day to day, so the biggest variable for my stability score is based on my HR and HRV.

Pacing

I understand a hope for this app is that it will help guide people in pacing to avoid post exertion exacerbation of symptoms.  

I have had a 2 day CPET and know that I can do very little physical activity without pushing outside my limited window of energy production.  Many years ago I started using a Polar FT4 with a chest strap to monitor my heart rate.  This offered a way to hear a beep whenever my heart rate went above my safe zone (about 100 bpm).  Because of having done that for quite some time, I already have a very good idea of how little I can do before going outside my safe zone.  Because of this limitation, I have no choice but to do some activities that are outside my safe zone (like showering).  I try to limit how often and for how long I am active outside my safe zone.

If I go far outside my safe zone and crash, my heart rate and heart rate variability will be affected and the app will capture that.

At this time, I can do very little to improve how I pace, so this app hasn’t offered me any new insight into pacing.

I think it needs to be recognized that “pacing” is not an effective strategy for those in the Severe/Very Severe ME category.  Because there is no “safe” activity for someone who is in the severe category, it may be that relying on a pacing tool like this could be potentially misleading. The issue being that a patient would only see the effects of doing too much after it is already affecting heart rate and heart rate variability.

I think this app’s full potential may be most effective for the less severe patients, but I am still finding it useful.

Trackers

Under the profile section there are trackers, including the following:

• Symptoms - several options are listed to include and an option to add custom ones.

• Exertion - cognitive, emotional, physical and social

• Other factors - menstrual period, crash, infection 

• Medication - add items 

There is also a section to state what illness you have.  They currently have Long Covid and “ME/CFS” listed.  There is an option for “other”.  I have added under other that I have ME as per the ICC.  

The privacy of the readings depends on if using the wearable device and if opting into research. Details can be found HERE.  

Research

It is possible to opt in for research based on the data collected.  I have opted to participate in the research.  See more HERE.

Monthly check-in

This is a recently added option to take a questionnaire called the FUNCAP27.  As stated in the newsletter about this new tool:

“The monthly check-in is a crucial tool to shine a light on functional capacity.”

“FUNCAP 27 is a patient-informed and validated questionnaire that uses 27 questions to measure Functional Capacity.”

“Completing the questionnaire provides a total score out of 6, where a score of 5.8-6 is typical of a healthy individual and a lower score represents reduced Functional Capacity.”

I have only done it once.  They recommend that if you have someone who lives with you or knows your day to day function that they help you fill out the questionnaire.  Once I started doing it, I realized this was a good idea as I was having trouble deciding on the answer and my husband’s input was very helpful.  My score for this first time was 2.9.  It will be interesting to see how this varies over time.

Using data to talk to my doctor

I am diagnosed with Postural orthostatic tachycardia syndrome (POTS) and take medication to lower my heart rate.  I am also getting IV fluids to help manage symptoms associated with POTS which includes an elevated heart rate when I stand.

I was getting IV fluids every two weeks when I first started using this app.  I started showing my doctor the emerging pattern that showed my heart rate and heart rate variability improved from the IV fluids, but the benefit wouldn’t last.  The pattern was fairly clear which led to my doctor to advocate for me to get weekly IV fluids.  I wrote about that HERE.  

Managing ME

While there is no cure for ME, the experts have offered testing information to help guide treatments to manage the disease.  Testing is on page 11 and the  management and treatment guide starts on page 13 of the ME International Consensus Primer. 

Within the guidance is the following under the “Reassessment – Regular Ongoing Follow-Up” section:

“Determine total illness burden by talking with the patient to determine the severity of symptoms, the dynamics of interaction within their cluster of symptoms, their accumulative effects, and the overall impact to patients’ lives over longer periods of time.  All aspects of patients’ lives must be considered – physical, occupational/educational, social, personal and emotional.”

I think this app could be very helpful in talking about this with your doctor.

Other tools?

If you have suggestions for other tools, please let me know.

Knowledge is power…

Colleen

Information provided here or in comments is not to be considered medical advice