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

They measured for 3 days after the test. There is some good discussion about things that could affect measurement of PEM using the NASA Lean Test. Good discussion for other studies that look into PEM to consider.

The authors felt that day of week affected the result, especially among controls, and this variation needs to be controlled for.

 

Thanks for the additional info .
We did a home version of the 10 minute lean test monitoring HR ( no BO sensor on our wearable). Pretty convincing OI, but need BP to explore this further.
Had we done this out of home situation PEM may have been a consequence.

My daughter has a routine , but feet on the floor would not have been a reliable indicator as she spends most of the day sitting on her bed ( feet up ) . She is semi reclined on a back support for a chunk of the day.

Lower resting HR was noticeable for a few days afterwards - always a harbinger of shit.

 

How long I have feet on the floor is definitely a sign of how well I am, distinct from problems with OI. It is much better than some of the scales where siting in a chair is seen as being better but they do not describe what sort of chair.

I use a heart rate monitor to tell how my ME is going and a device round my ankle which measured how long my feet were on the floor would be useful information for me day to day. It would be a great aid to pacing.

 

Dr Shad Roundy answered a couple of my questions. Good news is the work will continue. They believe it could be an important tool to encourage more investment in treatments.

 

Weird phrasing all right. Based on the article it looks like something got lost in translation between mental concept and the written expression of it.

This is a Preprint. Can they still fix it?

That's good to hear. This could be a useful addition to the toolkit. Of course no single device is ever going to be perfect for everyone in every situation - actually what I would really, really like is for somebody to invent a headband that can tell me when I've had enough mental exertion for a session - but having a wider range of physical activity measures can only be good, both as an assistance to individual pacing and as outcome measures in clinical trials.

For myself, I'm pretty sure the UpTime device would register a difference between better and worse periods, ranging from better end of severe to worse end of severe. For pwME who don't spend any time with their feet down the device would just register 'very severe' all the time - and that would be correct. Not exactly news to the pwME but a form of objective documentation nonetheless.

 

He did reinforce that this is a preprint and still to get reviewers comments. Seemed to welcome input.

 

Yea this type of objective measurement would have shown that PACE was crap.

 

This sensor does not measure the severity of ME. It's not that simplistic and you can't base it on upright time. There is a difference between measuring levels of disability and severity.

"Severely ill ME/CFS patients spend less than 20% of each day with feet on the floor". My best friend died from complications of ME and was very severe, much sicker than me, but his upright time was longer than mine.

 

If my maths is right then I probably spend, on average, less than an hour with my feet flat on the floor (by which I mean standing upright, moving around etc.) - as there are often 24 hours in a day that would equate to under 5%.

Of course it could be made more complicated by working it out based on an average 16 hour day (around 6%), or the number of hours I am actually awake (which is usually more than 16).

I don't really see how they could make it time out of bed as then they wouldn't capture, or would inaccurately capture, a lot of people.

Physically I am mainly housebound, and 'limited', but still manage to get the odd thing done, some aspects of my cognition are 'limited', others seem MIA, and others have actually improved (as far as the rest of me can tell anyway).

Moderate physical, probably moderate/severe cognitively (at least when 'challenged' by anything not totally routine).

To me (N=1) the idea that 20% foot down time, or less, equates to 'severe' is 'not accurate'.

20% could possibly equate to 3.2 hours up and moving around a day (assuming a 16 hour day) - that IMO is not 'severe'.

 

I rarely, very rarely, as in almost never, sit with my feet on the floor.

They tend to only hit the floor when I am am about to make an attempt to stand, or when I am doing something that requires me to stand.

So, yes, I agree, other measures are needed to gauge severity level, and as I was hinting, severity level isn't just one thing - I can do many simple short duration tasks whilst cognitively being slightly stupider than my fridge.

This may, indeed will, give an uninformed, or biased, observer the impression that my capabilities are higher than they are in reality.

 

I'd love one of these to monitor variation in my condition as I try out new things. Quite expensive, at 359 Euros. Here's the product.

 

It will be interesting to look at the data when the paper is released post reviewing as then they will make the Excel data available. The algorithms they are using are not ready for sharing - still work to do.

 

indeed!

 

I need to make an effort to even scan this paper. It seems they can separate people with ME, from healthy controls, i.e. based on activity levels. However, I wonder if it would be possible to do the same for cognition. Have any studies shown that it is possible to separate people with ME, from healthy controls, based on cognition? I would have thought you would need to have a "before ME cognition test" and an "after ME cognition test" i.e. to establish whether people with ME have a decline in cognitive function compared to healthy controls.

REQUEST FOR ASSISTANCE
I'd like to do some brain storming here --- looking for ideas --- I'm involved in this https://europeanmecoalition.wordpress.com/

Is there any cheap way to measure activity levels using a mobile phone? E.g. to use activity levels as a way of selecting a group (cohort) of people with ME for a (GWAS) gene study?

@Michiel Tack

 

Yes for best results you would need to be able to go back in time to test people before the onset of their condition, though Covid-19 does present a theoretical opportunity to do a prospective study of an entire population, with enough subsequently developing the condition to actually get some meaningful results.

However if you have large enough sample size such that your long Covid group is big enough to represent a reliable profile of the entire long Covid population you can then meaningfully compare to a normal population. The current pandemic also offers that opportunity.

 

Thank you for your reply.

Could you combine a physical stressor (I think this used tilt test) with a test of cognitive function? E.g. identify a group of people with ME using a physical stressor and then assess the cognitive performance (of the people with ME and the control group) before and after the physical stressor.
If I'm talking crap then please point it out and explain why - I'd rather hear it in this forum than elsewhere!

 

There are activity tracker apps. On the iPhone it is "built in" on the Health app. A phone is not particularly cheap though......

The cheapest is a step counter/pedometer. Here is one that has a 30 day memory for $25 - you can manually log the data when you feel able too, say once a week into a free app such as Google Sheets.

Code:

https://www.amazon.com/gp/product/B078HWTK5P/