Thesis System and methods to determine ME/CFS & Long Covid disease severity using wearable sensor & survey data, 2023, Sun

[Hutan]

Thanks for the discussion @Michelle, it has helped develop my opinion.

It depends on what "suitable for use right now" means, though I suspect it's more institutional than technological. You are absolutely correct to keep pushing researchers like her to figure this out and it's a shame that we can't hear more specifically from her about how this works in the "real world" or compare and contrast how they are being used in other diseases like MS as you referenced above.

I agree.

I've just posted on another thread an announcement from Parkinsons UK about a decision by NICE earlier this year to approve 5 remote monitoring devices (smart watches, ankle monitors etc) for clinical use for people with Parkinsons.

"NICE have conditionally recommended 5 remote monitoring devices for Parkinson’s for use by the NHS in England. Further data on how the devices improve health, quality of life and the cost of care will shape a final recommendation.

The National Institute for Health and Care Excellence (NICE) has said that 5 devices that remotely monitor symptoms of Parkinson’s can be offered by clinicians to people with Parkinson’s.

Also some more discussion here:
United Kingdom: NICE National Institute for Health and Care Excellence

 

[Sean]

I think we should use the term activity capacity (or similar) instead of energy.

We are going to paint ourselves into a corner if we allow it to be conceptualised as an energy deficiency and management issue.

 

[wigglethemouse]

The Thesis has moved to a preprint site hosted by Cornell

System and Method to Determine ME/CFS and Long COVID Disease Severity Using a Wearable Sensor

Objective: We present a simple parameter, calculated from a single wearable sensor, that can be used to objectively measure disease severity in people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or Long COVID. We call this parameter UpTime. Methods: Prior research has shown...

arxiv.org