Long-Covid sufferers are using a tech hack to conserve strength

At the beginning of the pandemic, when people suffering with Long-Covid faced more questions than answers from doctors, they began collecting data on themselves using fitness watches to better understand their disease.

University of Copenhagen researcher Sarah Homewood was one of them, and has since researched the phenomenon. According to her research, while self-monitoring can offer people more certainty and control over the disease and their bodies, it can also lead to anxiety.

“Time to get up”, “You’ve walked less than average”, “You can still reach your activity goal”: an ever-growing number of people are being paced forward over the past few years by small wearable technology – typically worn around the wrist like a watch, with built-in sensors to monitor their physical activities and health.

Whether as sports watches, fitness trackers or software enabled smartwatches, these devices are now being used to manage disease as well, serving beyond their intended purpose as fitness-tracking technology.

Long-Covid is an example of a disease where sufferers have used fitness tracking watches, contradictory to their intention and design, to limit strenuous activities and conserve energy. E.g. by making sure their heartrate didn’t go to high on walks or deciding whether or not to shop for groceries based on the steps already tracked.

Sarah Homewood, an assistant professor at the Department of Computer Science, has experimented with this on both her own body and through research. She is behind two studies, both of which examine the use of fitness technology for Long-Covid-related self-monitoring.

In her most recent article, she examines the use of fitness trackers among twenty-one individuals with Long-Covid and concludes that self-monitoring has both good and bad aspects for users:

“Across all participants, the most common traits were a sense of greater control and certainty about the disease, better opportunities to document symptoms to oneself, family and their doctors, but also situations of uneasiness or anxiety triggered by use,” says Sarah Homewood.

The researcher highlights one participant’s visit to a float tank as an example. The visits had been a peak of relaxation for the woman, until data from her fitness tracker reported elevated stress levels, after which the woman stopped going to the activity.

“There is a clear tendency for data to eclipse experience. The data users get can have a major impact on how they assess situations. In some contexts, it can be a source of unrest, while in others, certainty and security,” says the researcher.

Not used as intended

The results also support her first research study on the subject – a so-called autoethnographic study of her own illness and use of self-monitoring. The researcher’s experiences as a Long-Covid sufferer using of a Fitbit watch didn’t just evolve into her research study, they served as her personal path to recovery.

“I quickly realised that I needed to use the watch contrary to its intentions. I had to counter its design. Whenever the watch informed me that I had walked far and needed to keep going to reach a new distance goal, it was my cue to sit down. Because the watch provided me with ‘hard evidence’ to compare my experiences with, I could actually begin to piece together what worked and what exacerbated problems for me,” says the researcher.

Homewood was able to adjust her physical activities based on the watch’s heart rate readings, and in doing so, avoid paying a hefty price for overexerting herself. Ever since, she has seen this “hack” of the watch’s functionality to control her own physical activities mirrored in the new study’s participants.

The new study confirms

The new study shows that both the positive and negative aspects experienced by the researcher are recurrent trends.

Participants find that wearable fitness technology gives them more certainty that their experiences are real, and that they gain a degree of control over the disease and their body by using the data to understand and regulate their energy expenditure, among other things.

The reality for the participants where an unknown disease without a name. The measurements therefore become a way to understand a new disease that, despite resistance, can then be presented to a doctor for documentation.

The study shows that some of the participants’ doctors flatly rejected watch data. Other participants were met more positively, and some were even able to use it directly and get a diagnosis from the doctor.

“This is something relatively new and healthcare professionals need to get used to the fact that this type of data exists when they meet patients. But since fitness watches aren’t approved or designed to be medical devices, the information should also be taken with a grain of salt. Nevertheless, I don’t think it’s appropriate for doctors to be totally dismissive,” says the researcher, and continues:

Where a number of doctors may be skeptical about the idea of self-monitoring because they fear that it can lead to anxiety in laypeople and unnecessary doctor visits, Homewood points out that the opposite is also often the case: many participants express a feeling of empowerment in being able to do something to help themselves.

She also emphasises that technology can really help: “Take my example: despite nearly fainting, measurements taken at the doctor showed nothing. Data from the watch revealed that it was due to my heart. For this, I am grateful.

“But of course, we need to help this technology along and develop it with respect for its possibilities and as well as the risks that exist in the form of unnecessary anxiety, erroneous self-diagnosis, etc.”

Pointing out that even though data from these watches are yet imprecise, the watches are able to collect data from longer periods, which gives the ability to see trends, rather than just the one data point measured in the doctor’s office.

“Also this technology will improve. It is here to stay. We need doctors who embrace the technology and relate to the opportunities and risks that exist, and in doing so, help it to develop,” she says.

Better software on the horizon

Homewood is currently in contact with several companies that are working on software improvements tailored for diseases.

“It isn’t ideal for people who are ill to be measured by apps intended for sports and fitness. Being compared to a healthy body and asked to do more, when one’s own body doesn’t want to, can be an unpleasant experience. It gives feedback to people who are ill that isn’t appropriate and can trigger anxiety,” she says.

The researcher is also trying to speed up the development of a dashboard interface for presenting data that bridges the gap between self-monitoring patients and their medical providers.

“There is a need to improve communication between those who use these tools and their doctors about their data. That’s why we’re working to develop a dashboard that can be used differently by users and healthcare professionals. In doing so, users will gain a better overview, while doctors can access details that require a trained eye to interpret,” says Sarah Homewood.

Dementia technologies reach final of global challenge

A global challenge to find new technologies that use AI to transform the lives of people with dementia has announced its five finalists.

They include AI glasses to help people navigate their environment and a smartwatch that learns daily routines.

The prize is rewarding the creation of new assistive technologies that use AI to help people with dementia post-diagnosis to maintain their independence for as long as possible.

Each will be awarded £300,000 as a finalist in the £4.4m Longitude Prize on Dementia.

The global project announced in early 2022 is funded by the Alzheimer’s Society and Innovate UK, and run in partnership with Challenge Works.

Its focus is on tools that are co-created with people living with the early stages of dementia, helping them to live independent, fulfilled lives so they are able to do the things they enjoy.

The finalists are:

CrossSense, from Animorph (UK)
High-tech glasses that help users recognise objects and people

The technology helps people living with dementia to recognise objects and people and remember what to say or do to improve memory recall. This will help them to carry out daily activities independently, such as making a cup of tea or greeting a loved one. The glasses, which also work with existing prescriptions, aim to delay the progression of memory loss and use synaesthesia – associating senses such as sights and sounds.

Theora 360, from Clairvoyant Networks Inc, (USA)
Smartwatch to predict and prevent falls using football pitch sensor technology

Existing ‘fall’ technology can only inform caregivers once an accident has happened, this groundbreaking update will use the technology that maps how a football moves on a pitch (Ultra Wideband) to establish when falls are likely to happen and ultimately prevent them. This tech, in the form of a smartwatch designed for older people, could anticipate slips at certain points in a daily routine (e.g. before bed) or in certain locations (e.g. the bathroom). By detecting and calculating fall risk, the tech could limit risk of hospital admission which can speed dementia symptom progression.

Automous, from Associação Fraunhofer Portugal Research (Portugal)
A smartwatch-based app to provide guidance on daily routines

This AI software processes data from a smartwatch and sensors around the home to learn about its users’ activities and gently guide them on their routines, reminding them of actions they may have forgotten through personalised cues such as illustrations (eg an open fridge or running tap), text, audio and vibrations. If they are not responsive, it will alert a carer. The software will become more intensive as a person’s dementia progresses, helping them to stay in their own home and community for longer.

Supersense Technologies, from Supersense Technologies (UK)
At-home monitoring-box that protects privacy

When a loved one is in the early stages of dementia and is still able to live independently, family members can sometimes worry about their wellbeing. This ‘sensor’ box and automated messaging system scans rooms to help remotely inform family members of the loved one’s wellbeing via Whatsapp or text message (e.g. your mum is up and about and the heating came on at the usual time this morning). This provides reassurance for both family member and user, but unlike existing monitoring technology, doesn’t use cameras or wearables, connecting caregivers without infringing on privacy.

Memory Aid, from the MARCS Institute at Western Sydney University and Deakin University’s Applied AI Institute, Australia
Home assistance device resembling a traditional telephone

A device which offers a screen for video calls which can also display personalised reminders of daily activities. The phone connects users to a reassuring voice-recording of their choice that shares prompts on daily activities and displays images of items in that person’s house. It also makes video-calling loved ones as easy as picking up the phone, to empower people living with dementia to do things they love that bring meaning.

Kate Lee, CEO of Alzheimer’s Society, says: “AI presents exciting opportunities to help those with dementia stay active and independent, to enable them to remain in their own homes for as long as possible. By harnessing the power of technology, we can support memory recall and assist individuals in maintaining their daily routines. The five finalists of the Longitude Prize on Dementia are tackling these challenges in innovative and diverse ways. I look forward to seeing how their technologies evolve over the next year.”

Stella Peace, interim executive chair, for Innovate UK adds: “Dementia’s impact is devastating for those who develop the condition and for their loved ones. There is much we can do to ensure that those with dementia continue to live fulfilling lives.

“Technology has a great role to play and the projects for which we have announced funding today have the potential to truly change lives for the better.”

In early 2026, one winner of the prize will receive £1m. This will follow a judging process with the international judging panel and lived experience advisory panel.

Q&A: Ethical decision-making around neurotechnology treatments

A novel neurotechnology treatment known as deep brain stimulation (DBS) can benefit patients with neurological disorders, but it involves surgical procedures with potential risks.

Assessing the risk-benefit tradeoffs and the ethics in making decisions about whether to begin such treatments and when can be tricky for both patients and clinicians.

Laura Cabrera, associate professor of engineering science and mechanics, received a four-year, $1.5 million grant from the National Institutes of Health to research and develop a patient-centred decision aid to help guide patients, providers and caregivers navigating their options.

In a Q&A, Cabrera, who also is the Dorothy Foehr Huck and J. Lloyd Huck Chair in Neuroethics, a senior research associate in the Rock Ethics Institute and an associate professor of philosophy, discussed her plans for the research.

Q: What is deep brain stimulation, and what conditions does it treat?

Cabrera: DBS is a neurotechnology that involves the surgical implantation of an electrode or electrodes in the brain and the implantation of a pulse generator — sometimes called a “brain pacemaker” — under the patient’s clavicle or in the abdomen.

The pulse generator, which controls the settings of the brain implant, such as voltage and frequency, is carefully programmed to deliver electrical impulses to specific targers in the brain to modulate brain activity.

DBS is currently approved for patients suffering from a variety of movement disorders, including Parkinson’s disease and essential tremor, as well as for patients with treatment-resistant obsessive compulsive disorder.

There are a growing number of clinical trials to see if DBS can also help with other neurological and psychiatric conditions.

Q: What are the potential benefits or drawbacks for using the treatment early in a disease’s progression?

Cabrera: We know that different patients have different values and preferences regarding their health care; some will opt for an advanced neurotechnology early in the disease progression, while others will wait until they have exhausted other mechanisms.

Potential benefits include reduced medication use and less surgical risks, which increase with age. Some studies claim even reduced costs to patients and the potential to be disease modifying.

However, there also are important drawbacks, including the potential to be misdiagnosed and cumulative operative risks that come with living more years with implanted hardware.

Early use of DBS has the possibility of increased life expectancy, which exposes patients to more disease complications not addressed by the intervention.

Q: What are some ethical concerns to consider when deciding whether or when to use neurotechnology?

Cabrera: Key ethical concerns are related to informed consent.

The use of advanced neurotechnologies is a value-laden, preference-sensitive medical decision due to the complex trade-offs and burdens associated with them.

Aside from costs, which might include surgery, devices, anaesthesia, and hospital and physician fees, some additional decision-making considerations include quality of life, convenience, timing of intervention, limitations and changes in the activities of daily living, long-term outcomes, as well as additional decision-making considerations will be identified in this research.

As such, having a mechanism to assess patients’ understanding of these considerations and alignment with expectations is key.

Q: How do you plan to help clinicians, patients and caregivers make decisions on whether to pursue advanced treatments involving neurotechnology?

Cabrera: A relevant approach to decision making is a process called shared decision making, in which physicians and patients arrive at a treatment plan together after considering patients’ individual values, preferences and goals.

This process is enhanced by patient decision aids, which are used to support patient participation in the decision-making process and increase the likelihood of reaching a treatment decision that is not only clinically sound, but also in line with a patient’s values and preferences.

Through the course of this grant, we will develop a patient-centered decision aid to help patients and their clinicians engage in meaningful shared decision making around the early use of DBS for Parkinson’s disease.

We hope that by having a tool that helps patients, caregivers and clinicians collaborate more effectively in the decision-making process, identifying the values and preferences each patient has regarding their health care needs, would allow them to identify the most appropriate time for a given patient to pursue this type of treatment.

The outcomes of this research can also help anticipate important future ethical issues and foster the responsible use of neurotechnologies early in the disease progression for a variety of brain related disorders.

Image: Kate Myers/Penn State