Actimetry Studies

Hi, there have been some suggestions that an Actimetry study would be useful in ME/CFS; perhaps we could use this thread to discuss.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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'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.

 

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/

 

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 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).