Accurate and Objective Determination of ME/CFS Disease Severity with a Wearable Sensor. Palombo et al. 2020

Full Title: Accurate and Objective Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Disease Severity with a Wearable Sensor

https://www.researchsquare.com/article/rs-48360/v1

 

This seems a simple and sensible experiment. I would like to see more complex analysis of patterns during the day but this is a start.

 

Other than the last sentence of the conclusion, which seems a bit odd, it does seem useful.

"With the added perspective of large-scale studies, this sensor-based platform could provide a recovery path for individuals struggling with ME/CFS."

I hope it means something like "this could be a useful objective measurement of physical activity, in trials of therapies for ME..."

ETcorrect: typo

 

This is the Bateman Horne center study that Lucinda Bateman has talked about

This was a Solve ME CFS Initiative Ramsay Award project

EDIT : Here is the Solve award write-up for Shad Roundy, a 2019 awardee. Nice to see a quick turnaround from award to reporting.
https://solvecfs.org/shad-roundy/

 

That was the plan. From the Solve ME/CFS application at the link above

 

Hmmm....it might be useful as part of a research trial to provide objective measurement.

In terms of categorizing severity - no, I don't think so. Gross oversimplification of the effects of the condition there. Especially, for those who are less troubled by POTs but might still be severe - so they might be upright longer just walk into & trip over stuff more. It also doesn't factor in the disability caused by cognitive dysfunction.

Disease severity in ME isn't terribly well defined or possibly understood. You have to factor in a lot more than how long can people remain upright.

At this point I think it can simply provide a before and after snap shot of one (of the many that need to be considered) aspect.

 

It's refreshing to read a paper where they discuss their failure to prove their hypothesis that the NASA 10 minute lean test would induce PEM and that that would be detectable by upright activity.

 

I have been surprised by the number of people with ME, yet not necessarily POTS who find sitting with their feet up much less tiring than having them on the ground.

 

Although it varies, in the last week I have spent relatively little time in horizontal position and still consider myself seriously impaired.

I've had periods of >50% time spent in bed too. I don't think the difference between these bad and the current good period can be adequately measured in terms of time spent with feet on the floor.

I would be LESS ill if I spent more time in bed resting. I just can't bear the boredom. If I could keep myself entertained in bed I would probably spend more time in bed.

 

this gets us nowhere.

 

I don't get all the negativity. This is a pilot study. As far as I'm aware this is the first time some has tried to objectively show orthostatic intolerance is a major symptom affecting quality of life. Many believe it just affects those with POTS and that is not the case.

With a tool like this you could take Systroms studies and see if there is a correlation between upright time and small fiber neuropathy tests, or other objective tests. In a Workwell CPET test it might give more objective info about the effect PEM. It shouldn't be expensive to implement.

 

I'm not negative about it. It's something that could be very useful. I think it's important that we don't overstate what something can do or results can show.

We have to be as objective & critical about this as about a BPS paper that makes a claim that goes beyond what their data show.

 

They used Shimmer and VICON inertial measurement units and then applied their own algorithms to extract the data on upright time.
VICON datasheet (Blue Trident?): https://www.vicon.com/hardware/blue-trident/
Shimmer (Schimmer 3?) : https://www.shimmersensing.com/products/shimmer3-imu-sensor

The Excel data doesn't seem to be available yet.

I wonder what it would take to build an app to communicate with these devices or the data that they generate such that it could be used by other researchers for their studies? Or will this end up an interesting avenue that doesn't get followed up due to funding?

 

I think activity measurement could be more accurate than time spent upright, although still flawed due to the inability to detect cognitive exertion and symptom burden.

 

They used inertial measurement units strapped to the leg so in theory activity can be measured at the same time. I wonder if they can extract that data too from the raw data they have and what it would show...........

 

I also believe that orthostatic intolerance is generally only recognized after a certain severity, when there begins to be an obvious connection between being upright and feeling worse. The underlying problem that causes the orthostatic intolerance can perhaps exist long before this point and continue to cause various vague symptoms throughout the day as the effect of sitting and being upright accumulates.

The body will try to compensate by releasing adrenaline and noradrenaline and these will make you feel unwell. They might also be the reason why people tend to overexert, because these hormones make you want to keep going. At least until the symptoms reach a point where it's just too stressful.

 

There's a myth in our community that we'd all recover under the right circumstances - avoiding PEM, stressors, being able to rest at all times when needed.

 

Depends over what time period they looked to correlate this.