One roadblock that I see relates to objective measures of treatment efficacy—in other works we have no accessible way to capture ‘energy system failure’.
If you have MECFS you are overwhelmingly aware that how you feel subjectively from one day to the next has very little bearing on how sick you actually are (this seems to hold up to a point, once ‘severe’ hits you know you very sick). Add to this that many of the treatment protocols that should help somewhat often make people feel horrible, even for extended periods of time. 99% of people in trials would stop taking a helpful treatment soon after starting if they felt they were getting worse, but feeling worse is actually the sign the treatment is working as predicted. Patients cannot trust their own experience and they also cannot assess if something is helping.
Wearables and metrics like HRV can be helpful (over time) but we desperately need testing (something extremely simple like urine test strips) that people can use daily or weekly to gauge where they are at.
Early on in the disease course most people find that it takes months or even years of constantly pushing and doing too much before they finally crash to severe. One of the primary needs as far as I am concerned is a way to capture this energy system failure.
To get the nerds we need to have easily accessible—DAY to DAY—home-based objective data collection.
One roadblock that I see relates to objective measures of treatment efficacy—in other works we have no accessible way to capture ‘energy system failure’.
If you have MECFS you are overwhelmingly aware that how you feel subjectively from one day to the next has very little bearing on how sick you actually are (this seems to hold up to a point, once ‘severe’ hits you know you very sick). Add to this that many of the treatment protocols that should help somewhat often make people feel horrible, even for extended periods of time. 99% of people in trials would stop taking a helpful treatment soon after starting if they felt they were getting worse, but feeling worse is actually the sign the treatment is working as predicted. Patients cannot trust their own experience and they also cannot assess if something is helping.
Wearables and metrics like HRV can be helpful (over time) but we desperately need testing (something extremely simple like urine test strips) that people can use daily or weekly to gauge where they are at.
Early on in the disease course most people find that it takes months or even years of constantly pushing and doing too much before they finally crash to severe. One of the primary needs as far as I am concerned is a way to capture this energy system failure.
To get the nerds we need to have easily accessible—DAY to DAY—home-based objective data collection.