Optimising and beta-testing a user-centred, accessible, self-management rehabilitation smartphone app reCOVer…, 2025, McCready, Newton+

SNT Gatchaman

SNT Gatchaman

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Optimising and beta-testing a user-centred, accessible, self-management rehabilitation smartphone app reCOVer for long-COVID fatigue using qualitative interview methods
J L McCready; M Campbell; K McCay; J Moore; V Deary; J Vines; C Higgs-McCallum; D Webster; J Ellis; J Newton; C Nobbs; T Rapley; K L Hackett

PURPOSE
Fatigue is one of the most common and disabling symptoms of long-COVID, yet individuals often struggle to access appropriate services and must self-manage. This study aimed to adapt an existing smartphone app, originally developed for fatigue in autoimmune rheumatic disease, for individuals with long-COVID.

MATERIALS AND METHODS
A multidisciplinary steering group reviewed current clinical and scientific evidence to inform the adaptation of the app, reCOVer. The app includes an activity pacing diary, goal-setting tool, assertiveness and communication cards, and guidance on fatigue, sleep, relaxation, and setbacks. Beta-testing was conducted with 11 individuals with long-COVID (aged 21–57). Each participant took part in two serial qualitative interviews: the first explored their experience of fatigue and initial reactions to the app; the second, after 7–10 days of use, captured usability and acceptability feedback.

RESULTS
Participants found reCOVer helpful, particularly for increasing awareness of unhelpful patterns (e.g., boom–bust cycles) and supporting behaviour change through pacing. Communication tools were valuable when cognitive difficulties were prominent. Suggested improvements included text-to-speech functionality, clearer goal-setting instructions, and better articulation of app benefits.

CONCLUSIONS
reCOVer shows promise as a self-management tool for long-COVID fatigue. Further research, such as a pilot RCT, is needed to evaluate feasibility and effectiveness.

IMPLICATIONS FOR REHABILITATION
Fatigue is a debilitating symptom of long-COVID and can significantly affect daily functioning and quality of life.

Smartphone-based self-management interventions, like the reCOVer app, may offer accessible and acceptable support for individuals managing long-COVID fatigue at home.

Features such as activity diaries, pacing tools, and communication strategies can help users recognise and adapt unhelpful behaviours (e.g., boom-bust cycles), supporting behaviour change over time.

Rehabilitation professionals may consider recommending or co-developing digital tools to extend support for individuals with long-COVID, particularly in contexts where professional support is limited.

Web | PDF | Disability and Rehabilitation | Open Access
 
One of the findings of our study was that some participants conducted a cost-benefit appraisal, which involved cognitively weighing the perceived costs of engaging with the activity diary (spending time, effort and energy) against the anticipated benefits (improvements, outcomes and rewards). This evaluation determined the individual’s motivation to invest and engage with the activity diary. To address this, the app’s onboarding tutorial could present an upfront description of the potential costs and benefits of using the tools, this would help users to reflect on the value of engagement from the outset.
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The second core component of the reCOVer app, the goal-setting tool, was not well-received by some participants in this study. This rehabilitation tool is recommended by NHS England as part of the national post-COVID-19 syndrome pathway [52] and is designed to support behaviour change by empowering individuals to maintain or improve the management of their own physical, psychological or social health [53]. Although the goal-setting tool used the SMART technique, some participants encountered challenges in identifying recovery-relevant goals and breaking goals into manageable tasks.
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Moreover, several users suggested the app should aggregate their data from other third-party health-tracking apps such as Fitbit or Garmin or have designated places within the reCOVer app to self-report biometric health data such as pulse rate, blood pressure, oxygen saturation rates, pedometric data, and quality of sleep captured by personal wearable technology devices. Such functionality would give users a comprehensive overview of their health, which they could monitor and respond to improve their self-management strategies further.
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It’s telling that there’s barely any health competency among the authors.

The questions they asked the participants are very general and won’t give them any real insight. They assume the app works, and are only looking for incremental improvements.
 
They seem to think that PEM is a worsening of fatigue, so they did not even get the basics right:
Individuals with fatigue report that engaging in minor daily life activities, such as brushing teeth, showering or answering emails, can quickly deplete energy and result in a worsening of symptoms described by individuals as a “crash” or a “setback” (i.e., PEM) [Citation9,Citation10]. PEM can occur up to 72 h after exertion, and recovery (through resting or sleeping) can take several days, although in some cases, it may take weeks or months to recover [Citation10].
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Then they talk about maladaptive behaviour. Citation 12 is about FM, so I don’t see how it’s relevant to PEM:
The fluctuating nature of fatigue can lead to maladaptive behavioural patterns whereby, in times of high energy, individuals over-exert themselves (boom), which is then followed by periods of debilitating fatigue and underactivity (bust) [Citation11]. Repeatedly engaging in boom-bust cycles may exacerbate fatigue and lead to reduced function and altered mood (e.g., depression) [Citation12].
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They seem to be awfully confused about what pacing is. They seemingly think that anything named pacing is in fact pacing, without any concern about what the given method entails.

They site this GET-version of «pacing» as evidence for why pacing should be used:

Apparently, they seem to think that it’s appropriate to use this app as a replacement for actual healthcare:
Although the original app was developed for a different illness population, the components were designed to manage and improve fatigue, regardless of health condition. We believe repurposing the SJOGO app could benefit individuals with long-COVID as it could offer support to self-manage some of the most impactful symptoms. The app could also be used before or in conjunction with accessing appropriate therapy or COVID-19 rehabilitation services, or as a stand-alone self-management toolkit for those who do not need or cannot access professional support.
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How do we ever turn this ship around? So much money and time has and is still being poured into gaslighting patients and pursuing a treatment approach that will worsen them.

I despair at this point. They do not listen to the science. They do not listen to the patients. They just want to keep going and going. When I interact with these services they talk to me as if I'm mad. They do not want to acknowledge that anyone could be harmed by their approach.

I hope that the truth comes out over the next few years and these institutions are sued into oblivion for the catastrophic damage they have caused.
 
It has just struck me that what the psychobehavioural school have built, in these apps and the BACME style services and all of it, are burecratic patient crippling machines.

That is not what they call them of course, but if we take the view that the purpose of a thing is what it does, that is what they are.

A disturbing thought.
 
What’s funny is you look at their “SJOGO” app paper and it was barely used over the time period (5–7 and 10–13 weeks) so they just shortened it for the ME/CFS trial to avoid this result.

“However, app engagement and outcome completion rates could be improved.”
Then the recover saw this and was like surely we should do this again!

www.frontiersin.org

Frontiers | A pragmatic double blind remote pilot feasibility randomised controlled trial of a self-management app for people with Sjögren disease

ObjectivesTo pilot and assess the feasibility of a fully remote effectiveness evaluation of a novel smartphone self-management app for people living with Sjö...
www.frontiersin.org www.frontiersin.org
 
ChronicallyOverIt said:
What’s funny is you look at their “SJOGO” app paper and it was barely used over the time period (5–7 and 10–13 weeks) so they just shortened it for the ME/CFS trial to avoid this result.

“However, app engagement and outcome completion rates could be improved.”
Then the recover saw this and was like surely we should do this again!

www.frontiersin.org

Frontiers | A pragmatic double blind remote pilot feasibility randomised controlled trial of a self-management app for people with Sjögren disease

ObjectivesTo pilot and assess the feasibility of a fully remote effectiveness evaluation of a novel smartphone self-management app for people living with Sjö...
www.frontiersin.org www.frontiersin.org
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The PACE trial method of rigorous study design! If you have a result you don't like, duke the stats so it goes away!
 
As usual, trying to turn a simple-but-hard problem into a complex-but-easy one. Nothing works like that, tools like this solve no problem for patients, and yet they proliferate because they are clearly incentivized. A purely top-down approach, 'patient-centred' that has nothing to do with what patients need, evidence-based where evidence, even outcomes, is irrelevant.
One of the findings of our study was that some participants conducted a cost-benefit appraisal, which involved cognitively weighing the perceived costs of engaging with the activity diary (spending time, effort and energy) against the anticipated benefits (improvements, outcomes and rewards)
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How can it make sense to ask people to evaluate entirely imaginary benefits? Change in behaviour, anticipated benefits, expectations. It's not that they don't understand the problem, it's that reject it. They prefer magical thinking, except it's not magical thinking as in magic, but a far less impressive stage magic version.

Like magic, it doesn't actually work, but it has zero ambition. Instead of being about doing supernatural things, moving objects or creating food out of thin air, it's about doing weak acts, like a stage magician 'guessing' a card picked by an audience member, by using a shuffling trick that guarantees it. It appears to work, but who gives a damn about any of this? Other than the stage magician and whoever hired them, of course.

Plus they find that most users don't find it useful, and not only recommend their app, but advise others to build their own app. A purpose that serves nothing to no one, not solving any problems that actually need to be fixed, while ignoring all the problems that exist. Pathetic.
 
Yann04 said:
Is it just me or do we have the exact 5 same “studies” done again and again on loop
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Been here daily for 8 years or so.

It's more like 3 studies, really. Long Covid hasn't even changed a single thing about it. In some ways this must be a lot like addictions, like gamblers who just can't quit because the next turn might win them back all they lost. Except they never lost a thing, we do all the losing. With our lives.
 
V.R.T. said:
It has just struck me that what the psychobehavioural school have built, in these apps and the BACME style services and all of it, are burecratic patient crippling machines.

That is not what they call them of course, but if we take the view that the purpose of a thing is what it does, that is what they are.

A disturbing thought.
Click to expand...
It's like Monsters inc., except instead of children nightmares it's real lives turned into waking nightmares, and instead of producing energy they produce, uh, themselves, I guess. So even worse than an actual fairy tales about monsters.

No coincidence that in most disaster movies, especially featuring monsters, it always begins with monsters, and ends with humans being the worst monsters of all.
 
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