Do we need a long-term actimeter study of PwME outside of treatment?

[Sasha]

There's been some discussion on another thread of an individual PwME who has been very severely ill for many years attributing his recent marked improvement to the unproven treatment protocol that he was using just beforehand. It's just the latest example of something that we see all the time. PwME who have been ill for years quite often pop up on social media attributing an improvement to a huge variety of untrialled interventions.

I understand people's frustration with this - PwME try stuff all the time in our desperation so it's not surprising that an intervention will precede by chance an occasional natural improvement and will look as though it caused it when it didn't. [Edit: Or might not have - we don't know.]

However, I think that that attribution is understandable because I think that most PwME assume that if you've been stably severely ill for ages, a spontaneous improvement is rare, once you've been ill for a few years.

The frequency with which these stories pop up suggest to me that spontaneous improvements are probably not as rare as we think - but nobody knows about them because no one is tracking the natural course of ME/CFS.

Should we have a long-term actimeter study - say, a couple of hundred PwME at varying levels of severity using actimeters daily for six months during which they use no new interventions - to get a handle on how common such upswings are? (And downswings?)

 

[Yann04]

This is a sidepoint so feel free to ignore, I‘m no expert and I‘m not the person this thread is talking about with the example of the severely ill person spontaneously improving. But having followed this person‘s blogs and social media somewhat closely. I get the impression their improvements were neither spontaneous nor „large“. In the sense that it seemed over 4-5 past years they‘ve had an upward trend but that has included setbacks aswell. Which has led to a major improvement of QOL (but when compared to a disability scale is relatively modest).

 

[Alinda]

I think the simple answer is just yes. But it needs to be set up well, and follow people for (imo) at LEAST 10 years.

Personally I have been filling in questionnaires for 1+ year for the dutch postcovid research network (https://www.postcovidonderzoek.nl/), I assume similar things have been done before or are ongoing? Has anything been published about this, even just questionnaires give some insight I imagine. Although I don't remember reading something like that.

 

[Yann04]

I think the simple answer is just yes. But it needs to be set up well, and follow people for (imo) at LEAST 10 years.

Personally I have been filling in questionnaires for 1+ year for the dutch postcovid research network (https://www.postcovidonderzoek.nl/),

I had been doing something similar for a John Hopkins study on Post-COVID but the questionnaire added up to hours each time and IMO wasn‘t asking very useful questions so I stopped.

I think the PLRC is doing something similar with the MyDataHelps app.

 

[Sasha]

I think the simple answer is just yes. But it needs to be set up well, and follow people for (imo) at LEAST 10 years.

I was hoping that by following a lot of people for a relatively short time, it would be like following a few people for a long time. I am willing to stand corrected! But I don't think we can expect people to wear actimeters for years.

Personally I have been filling in questionnaires for 1+ year for the dutch postcovid research network (https://www.postcovidonderzoek.nl/), I assume similar things have been done before or are ongoing? Has anything been published about this, even just questionnaires give some insight I imagine. Although I don't remember reading something like that.

Questionnaires can be quite effortful and I don't know how accurate they'd be. I think we'd want something that would take any burden right off the PwME. That said, I don't know how burdensome actimeters are in practice. I've never used one.

 

[Sasha]

I had been doing something similar for a John Hopkins study on Post-COVID but the questionnaire added up to hours each time and IMO wasn‘t asking very useful questions so I stopped.

I think the PLRC is doing something similar with the MyDataHelps app.

I think we need something that measures daily and doesn't rely on memory to provide data over a longish stretch - even a week. People aren't designed to remember how they felt a week ago.

 

[Yann04]

I think we need something that measures daily and doesn't rely on memory to provide data over a longish stretch - even a week. People aren't designed to remember how they felt a week ago.

While that would be ideal. I‘m not sure it‘s realistic for the very severe.

I think a FUNCAP and a symptom questionnaire every two months might be sufficient to get interesting long term data if done over 5+ years.

 

[V.R.T.]

I might be mistaken but I think Fluge and Mella said at Charite this year they will be doing a study where they just track patients for a while to see what happens. I know they measure steps usually not sure what else.

 

[Kalliope]

I might be mistaken but I think Fluge and Mella said at Charite this year they will be doing a study where they just track patients for a while to see what happens. I know they measure steps usually not sure what else.

Great. They published the paper "Activity monitoring and patient-reported outcome measures in ME/CFS patients" in 2022 in order to learn more about symptom variations (thread here). But I'm sure more background studies like this must be very useful.

 

[EndME]

Yes! Yes! Yes!

As I've mentioned numerous times this can easily be accompanied by some easy bio-data (say HR, temperature or similar). The studies I've seen doing something similar have not looked promising to me.

If there's 2 studies that I think should happen yesterday it's this and a sleep study.

 

[EndME]

I think the simple answer is just yes. But it needs to be set up well, and follow people for (imo) at LEAST 10 years.

Personally I have been filling in questionnaires for 1+ year for the dutch postcovid research network (https://www.postcovidonderzoek.nl/), I assume similar things have been done before or are ongoing? Has anything been published about this, even just questionnaires give some insight I imagine. Although I don't remember reading something like that.

The dutch publish this LC data yearly afaik, but this is not necessarily interesting data I would say. It's just a LC health tracking study, but other things like temporal relationships between PEM and exertion ect are not captured. No study has captured that well afaik.

 

[MrMagoo]

Some food for thought - I understand the desire to sort-of square the circle, but how about something the other way round? No, it’s not scientific, but we have a really engaged group of pwME who have been ill for years. Why not a survey of how it changed (or didn’t) over the years?

I myself had a period of remission where I appeared “recovered” and was able to do bike riding etc which didn’t even last two years., followed by the slow decline into severe. I really think somebody should be trying to capture the wealth of experience we already have.

Also I have been wearing a fit bit for 10 years now.

 

[EndME]

Some food for thought - I understand the desire to sort-of square the circle, but how about something the other way round? No, it’s not scientific, but we have a really engaged group of pwME who have been ill for years. Why not a survey of how it changed (or didn’t) over the years?

I myself had a period of remission where I appeared “recovered” and was able to do bike riding etc which didn’t even last two years., followed by the slow decline into severe. I really think somebody should be trying to capture the wealth of experience we already have.

Also I have been wearing a fit bit for 10 years now.

I think most importantly you won't be collecting some of the more interesting data like. Apart from this you'll probably always have considerable sources of bias, for example survivorship bias with such attempts. Those that have recovered might not be hanging around on S4ME etc.

Moreover I don't see why one should have to take shortcuts that can't deliver things one is looking for. This shouldn't be too hard or expensive. We get a new CPET study every other month. I don't see why someone can't do this. I think it's time for someone to do it properly.

 

[MrMagoo]

I think most importantly you won't be collecting some of the more interesting data like. Apart from this you'll probably always have considerable sources of bias, for example survivorship bias with such attempts. Those that have recovered might not be hanging around on S4ME etc.

Moreover I don't see why one should have to take shortcuts that can't deliver things one is looking for. This shouldn't be too hard or expensive. We get a new CPET study every other month. I don't see why someone can't do this. I think it's time for someone to do it properly.

I’m not sure 6 months of data will do it. But I do have 10 past years of data.

 

[EndME]

I’m not sure 6 months of data will do it. But I do have 10 past years of data.

But for example you don't have any data showing exertion-PEM patterns, nor temperature data because this data was never recorded. But I agree somethings you'll track for a couple of months only. Other things you'd want to track over many years (like recover/remission/worsening).

 

[MrMagoo]

But for example you don't have any data showing exertion-PEM patterns, nor temperature data because this data was never recorded. But I agree somethings you'll track for a couple of months only. Other things you'd want to track over many years (like recover/remission/worsening).

Well I think steps, sleep, and heart rate would be a decent start. You would also have the advantage of the subject not knowing they were being monitored.

And it would be interesting to survey how many pwME experienced a remission and whether it lasted or not.

 

[Kitty]

Should we have a long-term actimeter study - say, a couple of hundred PwME at varying levels of severity using actimeters daily for six months during which they use no new interventions - to get a handle on how common such upswings are? (And downswings?)

I know I'm only one person, but that wouldn't capture some of the important things about me. My fluctuations tend to play out over years, not months.

Also, there's often a complete mismatch between what I do and how I feel. Sometimes I'm still active when I feel terrible and shouldn't be doing anything (today would be a good example!) because I need to. Other times I feel as good as I ever do, and just sit on the sofa just listening to music or playing a few tunes. My step counts aren't much affected by my severity status; I can't walk any further on a good day than I can on the worst. They will sometimes show a small increase, but that may be down to necessity rather than feeling better.

So for some moderately affected people at least, it's not necessarily straightforward.

A trial of a potentially disease modifying drug is different kettle of fish, though. That needs to follow people for as long as possible beforehand and then after treatment.

Recovery to +/- 90% function really would show up in a way that most natural fluctuations don't. I'd be going out nearly every day instead of around two days a week, and I'd be staying out much longer than I currently can. I don't know whether I'd recover walking ability (not convinced it's all due to ME/CFS), but I'd definitely stay on my feet for 10 or 20 times as long as I can manage now. Etc.

 

[V.R.T.]

This is a big reason why we need real clinics - they can do this sort of tracking of patients with ease.

A ten year study of pwME who are not on any treatment would be confounded if an effective drug were found e.g. if dara works. You'd see a massive amount of participants drop out to try the drug and it could scupper the study entirely.

But if a clinic was collecting this data routinely over a long time and publishing results now and then, that could be interesting...

 

[Alinda]

The dutch publish this LC data yearly afaik, but this is not necessarily interesting data I would say. It's just a LC health tracking study, but other things like temporal relationships between PEM and exertion ect are not captured. No study has captured that well afaik.

I think you are talking about a different LC data tracking study, this one has questionnaires for PEM, FUNCAP, quality of life etc.

Edit: although obviously its all pretty subjective. But they did capture my abilities well despite not knowing much about pacing etc at the start (while FUNCAP suddenly "dropped" 1 point when I started pacing and being aware of my limits)

 

[Sasha]

Some food for thought - I understand the desire to sort-of square the circle, but how about something the other way round? No, it’s not scientific, but we have a really engaged group of pwME who have been ill for years. Why not a survey of how it changed (or didn’t) over the years?

Our surveys ever only pick up a tiny fraction of PwME and we're not normal PwME - we're likely a very biased sample of very ill PwME who have been ill for a very long time. I think we need (and deserve) proper data that indicate the full picture.

I myself had a period of remission where I appeared “recovered” and was able to do bike riding etc which didn’t even last two years., followed by the slow decline into severe. I really think somebody should be trying to capture the wealth of experience we already have.

Also I have been wearing a fit bit for 10 years now.

I think there'll also be bias in who has chosen to wear a Fitbit.