Trial Report Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study, 2023, Clague-Baker et al

[Midnattsol]

Of that we can only dream. (oh, apart from DecodeME)

I have hope that some of the large cohort studies with biobanks can be used for something at some point. But it would help to know what to look for. Maybe if decodeME finds some genes of interest these could be looked up in older biosamples and then checked against sick leave records or similar now following covid (just on the top of my head, as have been disucssed here previously sick leave is not without problems).

 

[bobbler]

Some background information about RER, it's probably over-simplifying things:
https://web.cortland.edu/buckenmeyerp/fall2004/labrvalue.html


This is the machine that reports the RER and oxygen use and CO2 production in everyday settings:


I agree that the concept of this study was excellent, exactly the sort of fundamental investigation using wearable technology that we've needed for so long, and the implementation of the testing with people with ME/CFS sounds to have been done really well too. The RER findings reflects what I feel, that doing trivial tasks of everyday living makes my body work abnormally hard.

I think the presentation of the data lets the paper down though. That paragraph I quoted above (copied here again), for example, does not give us the detail needed to understand what is happening. Yes, the means are different, but we don't know how much of an overlap there was between people with ME/CFS and healthy controls for 'time with physiological stress', 'time in recovery' or 'ratio of time spent in physiological stress and in recovery'. There should be some statistical analysis of difference between the people with ME/CFS and healthy controls for those parameters where there was data from healthy controls. If the authors felt that their study was too small and preliminary for such statistics, they could have at least presented results for each participant (ME/CFS and healthy) in a table, or shown the individual data in plots.



I hope that this group and others do much more of this sort of study, with bigger groups, stratified by activity levels, with sedentary controls and chronic illness controls and, yes, exploring the things that others have suggested such as impact of menstrual cycle and digestion, and cognitive effort alone, and during sleep too. I think there are lots of relatively easy studies using the wearable technology, and especially the portable cardio-pulmonary monitoring system, that could be done that would be useful.

This is fascinating, thanks for the RER explanation of what the R numbers mean

 

[Jonathan Edwards]

It is good to see some measurements like this going on. My reservation would be the interpretations like 'stress' or 'sympathetic dominance' and 'anaerobic threshold'. I think it would be much better simply to present the data as simply as possible and note any unexpected findings, hopefully based on adequate controls. If metabolism is disturbed then these interpretative concepts may simply not apply.

 

[rvallee]

I have nothing but praise for the authors and the quality of their work. They wrote their paper at a level any college graduate can understand. They conducted a novel experiment, made a real effort to accommodate pwME, presented their findings straightforwardly, and emphasize the points that are important for our dignity (debilitating nature of symptoms, PEM, and real biological abnormalities)

Their findings were very cool. They discovered that pwME exceeded their anaerobic threshold doing daily activities like making breakfast, and they discovered something mindblowing: That all the patients who could complete the cognitive assessment exceeded their anaerobic threshold just by thinking.

It's honestly ridiculous how much my pulse rises up simply writing on my keyboard. My position hardly changes. My hands and arms are rested. The cognitive effort alone can give me a rise of 20 BPMs easily.

This needs to be tested, it can be objectively quantified. There will be variations between individuals but it's pretty hard to miss.

 

[rvallee]

It is good to see some measurements like this going on. My reservation would be the interpretations like 'stress' or 'sympathetic dominance' and 'anaerobic threshold'. I think it would be much better simply to present the data as simply as possible and note any unexpected findings, hopefully based on adequate controls. If metabolism is disturbed then these interpretative concepts may simply not apply.

Stress can be perfectly substituted with exertion in almost all cases. So this works, and it's commonly used this way in many academic and clinical literature. It can always be poorly interpreted, but it works perfectly here. This is why fun things lead to the same.

In fact in pretty much all health monitors this is what they use, their notion of stress or strain is based on heart rate and heart-rate variability, aka effort. And the brain uses a lot of energy for thinking.

As far as I'm concerned, it almost always means the same thing. Even if it's people actually worrying, they're using their brain more, and thus more energy. But the idea of worrying is entirely unnecessary in almost all cases, it almost never actually applies.

The body uses energy for everything, it's not especially complicated when taken at such a high level. It's not as if "worrying" is its own special thing, it's still thinking, more than at rest, but still the same.

 

[Ash]

Would differences in hormones released during ‘negative’ thinking processes such as worry about whether you’ll be able to get social security support to help you pay rent and eat food after losing your job due to sickness and disability, be a different thing in terms of the exertion and toll on body in some way extra?

Even if so I’d say sickness if caused would be caused by the existential threat of being cast out cold and hungry rather than the worry arising from this. Even if it adds to the picture the answer is access to resources not pretending to yourself that everything’s fine so you don’t worry. Because actually worry is important and necessary alarm system a spur to life saving action.

 

[bobbler]

Would differences in hormones released during ‘negative’ thinking processes such as worry about whether you’ll be able to get social security support to help you pay rent and eat food after losing your job due to sickness and disability, be a different thing in terms of the exertion and toll on body in some way extra?

Even if so I’d say sickness if caused would be caused by the existential threat of being cast out cold and hungry rather than the worry arising from this. Even if it adds to the picture the answer is access to resources not pretending to yourself that everything’s fine so you don’t worry. Because actually worry is important and necessary alarm system a spur to life saving action.

Here's the thing the liars don't tell you: it doesn't matter if you think about it or not, being in a financially precarious situation is the stressor and in real ie scientific psychology rather than the anti-mental-health psychosomatic trend you look at the situational first because - and this is why they are liars - you can't e.g. treat PTSD whilst someone is still having bombs levied at them, in fact it tends to be in the simplest textbook form something that becomes noticed when the threat has finally eased and you then can't stop being vigilant.

Just like being in freezing cold might in some crazy people's heads be addressed by imagining a fire for a short time, but it isn't going to actually change anything more than a temporary answer on a survey done at an opportunistic time when peer-pressure is high: the cold will still have an impact on that person's body commensurate with length of time and any conditions/propensities. The idea bullying people and putting them in possible situations is best addressed with telling them they should think more positive is BS. It's anti-psych because what do they actually have to feel positive about unless someone is coming in to change the deal-breaker bit that means they have a break in moving forward (and this stuff seems to replace funding for that which I find the most egregious thing ever). Whether someone is a 'functional' or 'emotional' coper e.g. in the mechanism they tend to lean towards (and apparenly there are pros and cons to each depending on the situation) just breaking some headway on a impasse stops the 'spinning wheels' (of the car in the mud, not the mind) and gives some grip to other options.

Real psychology has a general rule to how to approach those in a bad situation: diagnose the cause. And start with the situational and fix that before you then see if there is a mental health issue that therapy would be useful for and match it specifically. The anti-mental health non-psychology pushed by e.g. IAPTS and 'transdiagnostic' (I've never heard anything more antipsychology and anti-what it claims it wants to do) stuff is about removing all the things that work and just telling people to say mantras which isn't far off a cult approach when I think about it, so they go away and learn not to bother others - but is mostly for the audience who are stigma-creators and happy to step up to do that as it works for them for various reasons (including putting themselves first and telling themselves they are 'helping' by not helping or doing what works for them) who kind of think the 'daring to be them in front of anyone' is a problem and if only the disabled didn't flaunt it in front of them then they'd feel less bad. SO it sells because peer pressure from everyone else, apart from the few who have empathy and call it, can't resist. Lots of people who might need a psychologist until ten years ago would need just a few sessions from someone good to diagnose and that was it, not a gravy train of those who offer only one 'therapy' that can go on forever and ever if it does nothing useful and who because they are one-trick ponies aren't allowed and have no reason to note the diagnosis is wrong or it isn't working.

Oh and because it kind of with something like ME makes the keeping exertion low impossible because you need to make things as simple and low-exertion in every way as possible, and your situation has been bullied so that it is like pulling teeth being undermined just to get something done those who are healthy and not poor and not abused (due to bad narratives being sewn that cause incitement) going around doing so and pulling rugs out from every task someone might do.

I'm now pretty sure, whilst they aren't clever enough to have seen that ahead of ime (certain personality types can't plan even though they do plot), the 'negative thinking' troping of 'rational thinking vs hiding in false reality and delusion for anyone's situation so you can't pretend there is no issue' is just a way of putting down the situation (anti-psychology, anti-mental health, anti-health) and pretending it doesn't exist (due to their own various issues and reasons for not wanting to acknowledge reality).

 

[Trish]

Getting back to the subject of this thread, the research was funded by the ME Association Ramsay Research Fund.

They have posted it on their website under the heading:
Research: Potential abnormalities found in home-based testing of everyday activities in ME/CFS
with the quote:
“Our home-based physiological testing conducted during everyday activity revealed potential abnormalities that varied between individuals that have previously not been reported. The protocol was found to be feasible and acceptable for people with mild to severe ME.”

 

[sarahtyson]

One of the authors is Sarah Tyson @sarahtyson. The assessments were done in 2021, and the study found that even people with severe ME/CFS were mostly able to use monitoring equipment without problems. I'm therefore not understanding Sarah's conclusion, expressed on the forum earlier this year, that objective outcomes aren't suitable for inclusion in a set of standard outcomes to be monitored in clinics. Outcomes could possibly be some of the ones investigated here, as well as others we have discussed on the forum related to activity levels.

This was interesting: (edit - it would be good to see the individual results)

At the risk of repeating myself, I said that physiological monitoring had a great deal of potential (based on my knowledge of these results and my own use of HR and HRV to monitor PEM) but there was a long to go before it was suitable for use in clinical practice. This study established that it is feasible to take these measures in someone's home and that they show physiological abnormalities during everyday activities.
But as there was no consistency in which measures were abnormal, the nature of the abnormalities, which activities triggered the abnormalities; the equipment costs 10s of thousands and take a whole day of the testers time, plus travel costs and ~a day/person to analyse the data it is very far from suitable for use in practice.

 

[Hutan]

This study established that it is feasible to take these measures in someone's home and that they show physiological abnormalities during everyday activities.
But as there was no consistency in which measures were abnormal, the nature of the abnormalities, which activities triggered the abnormalities; the equipment costs 10s of thousands and take a whole day of the testers time, plus travel costs and ~a day/person to analyse the data it is very far from suitable for use in practice.

There are a whole range of wearables, some of which are relatively inexpensive. And there are a range of measures, among which measures of orthostatic intolerance and activity levels do relate to illness experience.

But we were discussing that it is better to investigate objective measures than to investigate the use of subjective surveys in order to assess the utility of clinical interventions and better observe illness trajectories. We don't have to have all the answers at hand right now.

"which activities triggered the abnormalities"
I don't think we could expect that to be consistent - it will depend on illness severity.

"there was no consistency in which measures were abnormal, the nature of the abnormalities"
Isn't that useful information, if one person has a particular problem and another person has another problem?

"~a day/person to analyse the data it is very far from suitable for use in practice."
I don't believe it would take a day to analyse the data for a person once some measures are decided on and methods were streamlined. These sorts of things are eminently suitable for automation. It mostly just takes the will to focus on objective measures rather than continue to use and refine subjective measures that are highly subject to bias and tell us little about a person's disease.

 

[Michelle]

but there was a long to go before it was suitable for use in clinical practice.

@sarahtyson Thanks for stopping by again to this thread and sharing your thoughts. It's really helpful for us as patients and, I think, for you also as researchers when we are all able to discuss the very issues we are all most passionate about.

While I share your vehement hatred, @Hutan, of all things subjective questionnaire-based with regard to measuring this Damned Disease, I'm finding myself considering more @sarahtyson's comments in this post about the challenges of the use of wearables. I think she may be right that they are not ready for routine clinical use (as opposed to individual use) until we have more data.

As I've mentioned in a few posts over the years, I use a pedometer daily and have found it useful over the last 9 years for providing some sort of quantitative and semi-objective data for health care providers. However, I've also found there are times when there can be a real disconnect between what my pedometer is showing and what I'm actually able to do. For much of the last year, my step counts look like I'm doing just fine and yet my activity level is often pretty much the same as it is on days with a much lower step count (and I could see this being even more true for people who are less severe than me). I could easily see how a BPS study could use that sort of data to suggest that patients are more capable of movement than they think they are (and probably other ways of manipulating study design with wearables that I'm not even thinking of, especially when severely sleep deprived as I am at the moment).

Until we know which metrics are best at measuring functional capacity specifically in ME/CFS, how best to measure those metrics, and which wearables are going to best to do that, I think we must wait for the science to give us more definitive answers, unfortunately. Obviously the paper here in the OP is a vital step in that direction.

 

[Sbag]

At the risk of repeating myself, I said that physiological monitoring had a great deal of potential (based on my knowledge of these results and my own use of HR and HRV to monitor PEM) but there was a long to go before it was suitable for use in clinical practice. This study established that it is feasible to take these measures in someone's home and that they show physiological abnormalities during everyday activities.
But as there was no consistency in which measures were abnormal, the nature of the abnormalities, which activities triggered the abnormalities; the equipment costs 10s of thousands and take a whole day of the testers time, plus travel costs and ~a day/person to analyse the data it is very far from suitable for use in practice.

I w as one of the participants in this study and I just want to commend the team for their intentions in this research.

just to clarify the subjects were left with equipment to use for a week, apart from a couple of the more expensive pieces which were used while the tester visited my home in the morning when I was getting up.

the equipment that was left could be replicated by low cost wearables. I do wear a watch monitor that takes heart rate and oxygen levels and converts them to “body stress” levels. The team were interested in comparing this data in future to the results from the machines they left me with so that it could be determined if there was a good match and therefore whether low cost wearables can also be used to monitor levels.

the fact that they have shown that there are real physiological impacts on the body just from everyday activities and mental tasks is in my opinion hugely valuable. It is the type of research that a normal clinical team might not do because there is no financial opportunity at the end of it - no drug they can promote and sell, or clinics they can send people to for therapy (like BPS cohort push).

it might not be perfect but it’s a start in the right direction and I thank the team for the time they did put in to this which included getting up early to be at my bedside before I got up in the morning.

sorry for being a bit inarticulate and not putting my point in the way I want but brain is foggy at the mo.

 

[Trish]

sorry for being a bit inarticulate and not putting my point in the way I want but brain is foggy at the mo.

You have explained it well, and it's great to have feedback from a participant. Thank you.

 

[Hutan]

While I share your vehement hatred, @Hutan, of all things subjective questionnaire-based with regard to measuring this Damned Disease, I'm finding myself considering more @sarahtyson's comments in this post about the challenges of the use of wearables.

It's not that I have a vehement hatred. I think it's fine to ask people about their quality of life in a survey, or about a whole lot of other subjectively reported parameters, like pain. But, we know about those approaches, and we know that those approaches are subject to biases.

it might not be perfect but it’s a start in the right direction and I thank the team for the time they did put in to this which included getting up early to be at my bedside before I got up in the morning.

I agree. To be clear, I'm glad this team did this study. It's definitely useful, and we need much more of this sort of stuff.
At the risk of repeating myself, (well, it's not a risk, I am repeating myself) that's exactly the point we've been making.
Subjective surveys are not where research money needs to be directed. It's objective measures, including those we can get using wearables that warrant investigation and development, and that will yield new information. The fact that not everything is sorted out for using wearables is why they need to be researched. At the same time, there are measures that could be operationalised for clinical use - it is being done for other diseases, it is feasible.