Webinar: Understanding ME: Investigating cellular and body-wide features of ME, Dr Daniel Missailidis, PhD

[wigglethemouse]

Time spent upright is already used by some clinics, I think originating at the Bateman Horne Center in the USA, but I think they just base it on pwME's noting it. I'm sure we've seen research with wearable devices that measure vertical/horizontal leg or body position.

How about using some sort of gadget that measures during the day whether your calves are vertical?

A researcher in collaboration with BHC did use a commercial sensor worn on the lower leg with custom software and together they published a pilot study. Maybe someone can find a thread here with the details. The researcher was hoping to refine the software but I don't know what happened to that project.

 

[wigglethemouse]

A researcher in collaboration with BHC did use a commercial sensor worn on the lower leg with custom software and together they published a pilot study. Maybe someone can find a thread here with the details. The researcher was hoping to refine the software but I don't know what happened to that project.

These are the two threads for the wearable upright sensor work at the Bateman Horne Center

Pilot study thread : Accurate and Objective Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Disease Severity with a Wearable Sensor
Thesis thread : System and methods to determine ME/CFS & Long Covid disease severity using wearable sensor & survey data, 2023, Sun

 

[Murph]

How about using some sort of gadget that measures during the day whether your calves are vertical? The study participant could wear it for a day or a week or whatever, so you'd have a 'normal life' measure of what was going on, with no worry that you'd have caused anyone any payback.

I don't know if this gadget has been invented yet but I've been wanting one for years!

I think the Lumia device that they have started marketing to people with POTS in the US is a chance of giving this data in a really useful format. it measures blood flow to the ear, which is (they argue and have data to show) a good proxy for blood flow to the brain. Now, this proxy relationship may break down under certain conditions (and we don't know what they are yet), but a lot of the preliminary stuff looks very impressive, blood flow to the ear is certainly responsive to posture in people with POTS!

It would be a proxy for a certain type of upright time that might be clinically important - measuring times when you were upright enough that your body could not maintain flow to the head.