-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Actimetry Studies
- Thread starter FMMM1
- Start date
-
- Tags
- actigraphy
Two per patient. One each on the dominant arm (wrist) and leg (ankle). (Would be interesting to have four, one for each limb. Look at lateral dynamics too. A possible point of difference from healthy controls.)
Long term. Minimum one month, but longer is better. I see no practical reason why they could not be worn for a year.
Being able to measure smaller scale components of movement like typing, would be a plus.
Long term. Minimum one month, but longer is better. I see no practical reason why they could not be worn for a year.
Being able to measure smaller scale components of movement like typing, would be a plus.
Is there a way of time spent feet on or off the floor that would be useful i think.
Invisible Woman
Senior Member (Voting Rights)
I don't know if it's due to thyroid meds needing the odd tweak, OI or ME or a combination of all three but in hot weather my feet, ankles and calves swell and become very sore and tender. I wouldn't be prepared to wear anything on my legs when that's going in and it can go on for weeks or months.
I don't know how common that is with ME patients though.
I don't know how common that is with ME patients though.
Fair point, @Invisible Woman. There will be some who cannot wear them, or not all the time.
Invisible Woman
Senior Member (Voting Rights)
We would also need to bear in mind that this captures physical activity only & not cognitive function.
Even in my state I am probably more physically able than some forum members who have much better cognitive function than me.
I am playing devil's advocate a bit here. I think this is a good idea as long as we are aware about the limitations and don't allow ourselves to be mislead by readings.
Even in my state I am probably more physically able than some forum members who have much better cognitive function than me.
I am playing devil's advocate a bit here. I think this is a good idea as long as we are aware about the limitations and don't allow ourselves to be mislead by readings.
Perhaps there could be some kind of short? online cognitive test set up alongside that you could do once or twice a week or something that would try to pick up fluctuations
Invisible Woman
Senior Member (Voting Rights)
No. Unfortunately, that's not how the cognitive problems manifest, in my case at least.
My cognitive function waxes and wanes during the day quite significantly.
I can almost guarantee that in order to ensure being able to do the test once a week, you would have to pace yourself for it and thereby affect the results of the test.
Plus, those who are badly affected may not be able to function well enough to do the test at all. By definition they won't be those who are the most cognitively impaired.
It seems to me there are significant limitations to actimetry. Both physical and cognitive activity lead to PEM. If you wanted to make someone look good on actimetry, surely all you'd have to do is encourage them to do more physical activity and less cognitive activity? Or vice versa, which could make them look worse when they aren't actually worse.
Snow Leopard
Senior Member (Voting Rights)
The key with actimetry is not that it is an either/or, but used in addition to other measures, including measures of symptoms and level of cognitive activity.
Peter T
Senior Member (Voting Rights)
I agree, in real life clinical studies the situation can be very complex, and although objective measures are infinitely preferable to subjective outcomes in situations were blinding is not possible, ultimately it may be impossible to avoid all ambiguity so convergent evidence from different sources may be needed.
I see Actimetry as part of a combined outcome measure with other things.
It would be better than, for example, the SF-36 physical functioning with its ambiguous 'a lot of difficulty' and 'a little difficulty' for each descriptor which are easily influenced by the therapist.
I take the point that cognitive function needs to be assessed in some way alongside this, as do symptoms such as pain for those who have pain. Some of these may have to be done more subjectively but in a way that makes sense to ME/CFS patients.
Medication use for relief of symptoms could be a useful additional measure.
It would be better than, for example, the SF-36 physical functioning with its ambiguous 'a lot of difficulty' and 'a little difficulty' for each descriptor which are easily influenced by the therapist.
I take the point that cognitive function needs to be assessed in some way alongside this, as do symptoms such as pain for those who have pain. Some of these may have to be done more subjectively but in a way that makes sense to ME/CFS patients.
Medication use for relief of symptoms could be a useful additional measure.
Ravn
Senior Member (Voting Rights)
No one device, no matter how clever, is ever going to suit all patients or all situations. Actimetry is just another tool in the box, to be used in conjunction with other tools.
The Bateman Horne Centre is working on that. Discussed in this thread:
https://www.s4me.info/threads/accur...h-a-wearable-sensor-palombo-et-al-2020.16205/
Also, Moreau mentioned in a talk a while back he was using hexoskin vests. They look rather cool but also difficult to get in and out of. https://www.hexoskin.com/
There are studies of wearable sensors of various sorts being done with healthy people. Here are some posted on the forum:
This pilot study of wearable sensors using healthy people may be of interest:
Assessment of Fatigue Using Wearable Sensors: A Pilot Study - 2020 Luo et al
A Data-Driven Approach to Predict Fatigue in Exercise Based on Motion Data from Wearable Sensors or Force Plate, 2021, Jiang et al
I think a search under words like 'wearables', 'actimeters' and 'activity monitors' might yield more research papers.
This pilot study of wearable sensors using healthy people may be of interest:
Assessment of Fatigue Using Wearable Sensors: A Pilot Study - 2020 Luo et al
A Data-Driven Approach to Predict Fatigue in Exercise Based on Motion Data from Wearable Sensors or Force Plate, 2021, Jiang et al
I think a search under words like 'wearables', 'actimeters' and 'activity monitors' might yield more research papers.
There's a thread somewhere, on this site, relating to a study comparing a "time upright" monitoring device versus questionnaires --- so perhaps time off feet can be interpreted using a device like that? Or at least an analogous measurement made.
Last edited:
I think it may help to consider what the actimetry reading are for "purpose". E.g. the a PACE type study could probably be evaluated using fairly basic kit - time spent upright - steps ---. The intervention didn't result in the hoped for benefit -- increasing activity, getting people back to work/study ---. So the devices available are fit for that purpose. However, there may be other "indicators" which the currently available devices are not useful for.
@Jonathan Edwards thought actimetry was an interesting area of study: "When I acted as MRC advisor this recent time around the GWAS project was the one thing that looked worthwhile, apart from maybe some actimetry studies."* Jonathan there seems to be a route for patients/carers etc. to suggest research areas**. Grateful for your views re the use of actimetry.
*https://www.s4me.info/threads/georg...dian-article-21-1-21.18562/page-4#post-319043
**https://mecfsresearchreview.me/2021...d-to-treat-patients-as-partners-not-subjects/
Invisible Woman
Senior Member (Voting Rights)
I agree. However, 20+ years in to life as a chronically ill person dealing with the health system and authorities has taught me a couple of things.
Firstly, people tend to make assumptions and generalizations (yep, I'm doing it now too). So people assumed the PACE trial was studying ME or CFS, sometimes both. However, it wasn't. It was supposedly a trial into a particular intervention.
Secondly, when those in power generalise I have never seen them err in our favour. So, if based on a trial it shows X is true (& beneficial) for those in a milder category, then they'll assume it's true for everyone.
So, in my opinion, to avoid further harm to.our community we need to be really clear about what we're measuring and why. We also need to be clear about the limitations of any such study in determining levels of disability. Researchers themselves also need to take some responsibility speaking out when their studies are misinterpreted or generalizations are made that are not borne out by the research.
I think we also need to remember that in measuring our behaviour we are still measuring something downstream of what is happening. It is entirely possible th at measurements of behaviour are not necessarily an accurate indicator or what's really going on. For example, there may be significant overlaps in severity levels between patients - Patient A may seem to be more functional than Patient B but Patient B may have fewer or milder symptoms because they manage their lives differently. This can be very difficult to capture because it is very difficult to measure subjective symptoms and questionnaires just don't cut it.
As I say, I'm playing devil's advocate.
Let's say that a reasonable researcher was going to test whether CBT & GET had a positive effect for people with ME/CFS --- I assume that's what PACE was intended to do.
Select people based on clinical assessment i.e. using diagnosis of exclusion (you aren't suffering from an identifiable "other" illness i.e. you have ME/CFS). You then establish baseline, i.e. using actimetry, and you measure the "new" baseline post intervention (CBT & GET) using actimetry.
In many ways it's so simple yet those who carried out the PACE study managed to create this mess and, worse still, those responsible Government Departments (Department of Work and Pensions funded PACE), NICE, Lancet --- fell for this poor study/deliberate deception - PACE.
To some extent I'm trying to look for the boundaries for actimetry - would a sleep study be useful? Are the current sensors, e.g. measuring time upright, adequate or are there other technologies which are currently viable/potentially better - potential research to fund?
I think if actimetry is used it has to be for the entire period of the study and a year or so afterwards. We need a full picture including frequency of PEM, whether an activity level is sustained for months on end, or just pushed to try to show you're doing more for the test week etc. And if it's an activity based treatment, to assess whether the person is actually increasing their overall activity, or just 'doing the x minutes walk' as prescribed, then resting all day to recover and cutting out other activities to be able to do it.
Invisible Woman
Senior Member (Voting Rights)
I see what you're saying @FMMM1 but the problem is I don't think actimetry can paint the full picture.
It is simply looking at a the disease from one perspective and so the picture it gives can potentially be very misleading. We may well be measuring something but not necessarily what we think we're measuring.
What exactly is PEM though? How do we know that two patients are referring to exactly the same thing? It is possible to assume PEM or that PEM feels.worse than it otherwise might because the weather has changed or you've caught a cold (some.of us experience that as PEM rather than the typical cold symptoms).
It is simply looking at a the disease from one perspective and so the picture it gives can potentially be very misleading. We may well be measuring something but not necessarily what we think we're measuring.
What exactly is PEM though? How do we know that two patients are referring to exactly the same thing? It is possible to assume PEM or that PEM feels.worse than it otherwise might because the weather has changed or you've caught a cold (some.of us experience that as PEM rather than the typical cold symptoms).