Managing Energy Levels in Academia: Expanding the Conversation on Long COVID Pacing Technologies, 2026, Girouard

[Dolphin]

https://hal.science/hal-05552565/document

Audrey Girouard, Raphaëlle N. Roy, Shanel Wu. Managing Energy Levels in Academia: Expanding the Conversation on Long COVIDPacingTechnologies. 19th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2026), Mar 2026, Marbella, Spain. ⟨hal-05552565⟩

Managing Energy Levels in Academia: Expanding the Conversation on Long COVIDPacing Technologies

Audrey Girouard1 a,Rapha¨ elle
N. Roy2 band
Shanel Wu1 c
1Carleton University, Ottawa, ON, Canada
2F´ed´eration ENAC ISAE-SUPAERO ONERA, Universit´ede Toulouse, Toulouse, France {first author, third author}@carleton.ca, second author@isae-supaero.fr

Keywords:

Abstract: Long COVID, Pacing, Digital Tools, Energy Management.

This report shares the experiences of two researchers who live with Long COVID (LC). LC is a chronic condition where COVID-19 symptoms linger for over 3 months.

Like many other chronic illnesses and postinfectious syndromes, LC limits a person’s energy and managing the condition often focuses on “pacing”, i.e. regularly reducing activity levels to avoid post-exertion malaises.

Pacing is difficult to implement, and so is the general recognition and management of LC symptoms.

We report our experience with tools to help manage energy levels in an academic work context.

We reflect on the recent work on pacing technologies and contribute our perspectives to advance HCI’s understanding of Long COVID and other complex, fluctuating chronic illnesses.

As disabled scholars, we advocate for technology that supports pacing, an emerging topic in HCI and accessibility spaces.

 

[Hutan]

On the difficulty of knowing what PEM is:

Girouard: It took me over a year to recognize more clearly what a crash was. This means that at the be-ginning, I wasn’t reporting and recording my condi-tion correctly. I only considered crashes that I would now qualify as “enormous”, while it is important to also record smaller crashes (shorter in time and/or in intensity).

In truth, I was crashing almost daily, but because it was so frequent, I thought it was the norm with LC. Had I recognized them correctly earlier,I could have reduced my home activities and work periods to main to avoid crashing that frequently. This would have improved my quality of life earlier within my LC condition.

On baselines moving over time:

Girouard: My average day was worse two years ago compared to today, but I might still rate both expe-riences as “medium”, to leave room to indicate a very bad day as “high”, and a good day as “low”. This means that a “medium” from today isn’t equiv-alent to a “medium” from a few months or a year or two ago. My LC experience varies a lot through-out the day, even throughout an hour. This means that averaging my short-term experience to summa-rize the day is a difficult task in itself.

And on severity scales failing to capture real differences

Similarly, rating symptoms at their worst during the day may not reflect the entire day correctly. The experience I’ve had during a day where I felt miserable (i.e.,crashed) for an hour will be different than if I felt miserable for four hours. However, most scales en-countered do not capture that.

 

[Hutan]

On the 'adrenaline' type effect that enables the person to keep working, at the expense of a crash later:

Girouard:The timer is a critical tool for me so I don’t go over my limits without noticing. When I work, I get in the zone and I do not always notice my physical and cognitive fatigue levels. It’s similar to being on adrenaline when handling an emergency event: one can be fine during the situation in order to complete the task, and then crash afterwards. I need to use this external tracking tool so I can respect my pre-established limits (e.g. a work period of an hour maximum) and minimize crashes shortly after the end of work periods, or later on.

On the problem with using existing activity monitors that aim to get people more active:

Roy: The digital tool I use (activity tracker, stress tracker and cardiac activity tracker) comes with a Samsung smartwatch I started to use in March 2025. The problem is that these tools are designed to ask us to perform, while in my case, and for all LC pa-tients I think, it should be designed the other way: it should tell us to rest! For instance, if I am resting for an hour, the watch starts beeping, telling me “hey what about taking a walk?”. While what I want is: I’ve been working for 1.5 hour and the watch should tell me “hey how about resting a little?”. For the mo-ment, the only tool that might be able to do that, the Visible armband, is not available in my country.

On the use of remote access tools:

Software for virtual meetings (Zoom, Teams) enables us to interact and converse with colleagues when working from home, as well as maintain international collaborations, given that our chronic illness management prevents us from travel.

(I note that these two academics sound to have been senior academics when they became ill. Establishing a career while relying mainly on virtual meetings would be a lot harder than maintaining it.)

Roy:I have attended virtual workshops, confer-ences, meetings of national projects, defense juries, and PhD counseling meetings. The availability of this remote option that did not exist before lock-down is ironically increasing the accessibility of our line of work. But of course, the interactions are not the same

Asynchronous communication tools

asynchronous tools further reduced the energy demands of virtual work. Tools such as Slack, Discord, Teams, and emails enable us to respond when we have the energy to do so, instead of immediately and therefore constitute a great pac-ing tool.

The academics work in the field of accessibility for disabled people

As parting words, we challenge our col-leagues: don’t just do accessibility research projects, but also engage with institutional structures to im-prove accessibility in your community of practice.

 

[Jonathan Edwards]

I understand that it may take a considerable time for each person with ME/CFS to find the best way of planning their day to optimise what they can achieve and to avoid setbacks. What I query is whether digital technologies are actually any use for doing this. I also query the assumption that it has anythig to do with 'energy' or even 'activity' in the sense that a machine might measure it. A machine is not going to measure mental exertion. It is not going to measure the exertion of standing in a queue, which for a lot of people is surprisingly hard work.

And I worry that generalisig from one person's experience is necessarily helpful for others. What I hear here is that "PEM" is a very variable phenomenon. Crash means different things to different people.

 

[bobbler]

I understand that it may take a considerable time for each person with ME/CFS to find the best way of planning their day to optimise what they can achieve and to avoid setbacks. What I query is whether digital technologies are actually any use for doing this. I also query the assumption that it has anythig to do with 'energy' or even 'activity' in the sense that a machine might measure it. A machine is not going to measure mental exertion. It is not going to measure the exertion of standing in a queue, which for a lot of people is surprisingly hard work.

And I worry that generalisig from one person's experience is necessarily helpful for others. What I hear here is that "PEM" is a very variable phenomenon. Crash means different things to different people.

I agree completely

I have worn a visible band for a while and no it doesn’t capture all the aspects that make a day exertion so that the day vs pace points would give someone else a clue

In fact the useful/validating (for me) pattern I find is that it’s the afterwards where ‘doing the same’ on a PEM day - which might be lying down - is more HR and therefore ‘points’

That of course comes with a risk of anyone else was using that and guessing at what I’d done only from the graph

The one thing it seems consistent for is showering - which varies due to how well I am and other factors.

On the other hand appointments really take it out of me but the ‘at the time’ graph doesn’t necessarily show it all/all involved. Particularly when lots of exertion is hard questions travel etc

 

[Trish]

I think some tools can be helpful in the early stages of illness to find out what sort of step count and time spent continuously on mental activity leads to crashes and how long you need to rest. It's about helping someone to tune in to the signals they are getting from their body so they learn to take rest breaks as often and for as long as needed. But it's no way exact. It's just adding clues.

Some people may find using a timer to tell them to stop and rest, or a heart rate monitor, if that turns out to be a useful clue. Other will find it all a waste of effort.

I am surprised that the Visible app people didn't think more clearly about things like monitoring steps and time upright as part of their data and chose to sell a wearable that only records HR and HRV. As I understand it they depend for their advice to people about how active to be each day too much on heart rate variability, which many of us don't find a useful clue to how close we are to crashing.

 

[Trish]

As the authors of this paper point out a more useful wearable than the current ones sold for 'fitness' tracking, would be one that buzzes or beeps to tell us to slow down, not one that buzzes or beeps to tell is to get moving. My fitbit vibrates when I'm overdoing it sometimes, but it's message is to congratulate me on doing some vigorous exercise (ie something that raises my HR significantly like getting dressed). For me, it's a signal to stop, not one to keep going.

 

[Felis Catus]

I was surprised this was published in a form of a conference paper rather than a newspaper article.

We hope this experience report will help raise awareness in the academia community about LC symptoms and management, so that researchers who suffer from LC can be better understood by their colleagues and therefore avoid miscommunication issues and tensions. As parting words, we challenge our colleagues: don’t just do accessibility research projects,but also engage with institutional structures to improve accessibility in your community of practice.

It reads to me like they're addressing their problems at their particular workplaces and trying to formally justify the change in their (authors') behaviours and productivity.

I'm not sure what's in there for people who can no longer take care of themselves, let alone work, because there is no amount of pacing and apps that can substitute health.

 

[Eleanor]

As the authors of this paper point out a more useful wearable than the current ones sold for 'fitness' tracking, would be one that buzzes or beeps to tell us to slow down, not one that buzzes or beeps to tell is to get moving. My fitbit vibrates when I'm overdoing it sometimes, but it's message is to congratulate me on doing some vigorous exercise (ie something that raises my HR significantly like getting dressed). For me, it's a signal to stop, not one to keep going.

This was one thing I did find useful with Visible (the paid version): you can set it to beep when your heart rate has been over a certain threshold for a certain amount of time. So it wouldn't beep for every single HR spike, which would just get annoying, but it would beep if I'd got into that thing of "I'll just do xyz and then I'll sit down", where you end up doing just a bit too much each time and it accumulates.

Also it can be handy for other people around you to get a signal of when you really need to get off your feet.

 

[bscheurle]

I understand that it may take a considerable time for each person with ME/CFS to find the best way of planning their day to optimise what they can achieve and to avoid setbacks. What I query is whether digital technologies are actually any use for doing this. I also query the assumption that it has anythig to do with 'energy' or even 'activity' in the sense that a machine might measure it. A machine is not going to measure mental exertion. It is not going to measure the exertion of standing in a queue, which for a lot of people is surprisingly hard work.

And I worry that generalisig from one person's experience is necessarily helpful for others. What I hear here is that "PEM" is a very variable phenomenon. Crash means different things to different people.

I have often wondered about the legitimacy of the common assumption that literal energy expenditure is the cause of PEM. Many activities we think require lots of energy don’t require much more energy than resting. Does listening to a chirping bird or seeing light actually require much more energy than resting? Or is it that they are stressors for those who are sensitive? (I don’t actually know the answer to this question but my intuition is that, say, watching TV doesn’t increase literal energy expenditure by very much at all — we certainly don’t lose much weight by watching TV — but can easily induce PEM.)

I have heard of many male patients who can tolerate some sexual activity but not orgasm, which invariably causes PEM, even if it occurs while sleeping. I think this is quite interesting given the role of the sympathetic nervous system in orgasm, but I’m only working with anecdotes.

I should be clear that I am not convinced stress is the cause of PEM either. But I have always been suspicious of the notion that energy expenditure is the key culprit and not just a part of one of the many roads to Rome.