Design and validation of an energy level diary for fatigue management in patients with post-COVID syndrome, 2025, Balke et al.

[SNT Gatchaman]

Design and validation of an energy level diary for fatigue management in patients with post-COVID syndrome

Spoiler: Authors

Balke, Maryam; Garbsch, René; Cormann, Jessica; Pape, Pantea; Mooren, Frank C; Schmitz, Boris

BACKGROUND
Post-COVID syndrome (PCS) is a frequent condition with an incidence of 7.8–10.6 per 100 unvaccinated and 3.5–5.3 events per 100 vaccinated persons. Cognitive and motor fatigue are common clinical manifestations, limiting patients’ occupational, educational, and social activities severely.

OBJECTIVE
This study aimed to develop a diary to keep record of daily changes in energy levels of patients with PCS to adapt their rehabilitation program.

MATERIAL AND METHODS
We conducted a prospective observational study at two German rehabilitation centers in a codesign approach with repeated feedback loops. Daily energy changes were analyzed and validated using the Multidimensional Fatigue Inventory-20 (MFI-20).

RESULTS
The final diary revealed that morning and evening energy levels of patients with PCS differed significantly, with 49.6 ± 18.6% and 33.4 ± 19.7%, respectively (p ≤ 0.0001, on admission). Energy levels decreased by ∼5% with active therapy and increased by ∼5% with passive therapy (p < 0.0001). A comparison with MFI-20 at discharge showed good negative correlation (r = −0.5358, p < 0.0001), and patient interviews revealed that most patients (N = 19; 95%) rated the diary as “useful for self-reflection” and “helpful tool to learn the process of pacing.”

DISCUSSION/CONCLUSION
This diary is a valid and user-friendly tool to detect and control the effects of daily therapy during the rehabilitation of patients with PCS. It will facilitate individual planning and adaptation of therapies in PCS and other fatigue groups and may help to implement an effective relation of exercise load to load capacity (pacing) for optimal coping with the disease and an improved handling of daily activities in patients’ lives.

CLINICAL TRIAL REGISTRATION
Clinicaltrials.gov, identifier (NCT06883500).

Web | PDF | Frontiers in Rehabilitation Sciences | Open Access

 

[SNT Gatchaman]

Patients with PCS (N = 66; 67% women) involved in the final usability and validation study were referred to rehabilitation with an average age of 51.7 ± 10.3 years and a mean time interval between first infection and start of medical rehabilitation of 453.0 ± 294.7 days. Fatigue/exercise intolerance was observed in ∼96% of patients, while cognitive dysfunction (∼76%) and shortness of breath (∼59%) were less common.

Over the course of rehabilitation, patients showed small fluctuations in both morning (mean max. 55%; min. 42%) and evening (mean max., 38%; min., 29%) energy levels, but no statistically significant changes were seen from admission to discharge (both p > 0.05). A difference in morning and evening energy levels was seen independently of sex and age (both p < 0.0001).

During rehabilitation, morning energy levels of CAD [Coronary Artery Disease, control] patients increased slightly (+7.5, n.s.), while energy levels of PCS patients remained stable. None of the CAD patients reported an energy level of <10% in the evening.

The slightly increasing morning energy levels during rehabilitation might indicate a positive adaptation of fatiguability not seen in PCS patients

The effects of individual therapy classes (active, passive, cognitive) on energy levels were analyzed […] During a mean of 29.9 ± 5.7 days, patients participated in ∼23 therapies per week including ∼11 active and ∼3 passive therapies. Energy levels decreased on average by ∼2% with each cognitive therapy session (total of 488 sessions, p = 0.0057) and by ∼5% with active therapy sessions (1,926 sessions), while passive therapy sessions (337 sessions) regenerated energy levels by ∼5% (both p < 0.0001). Of note, cardiopulmonary exercise testing (CPET) was perceived as a strong energy drain, reducing the energy level by ∼20% (p = 0.0007). The change in energy levels in percent correlated significantly with the rating of therapies using emojis (r = 0.4124, p < 0.0001).

The diary was able to detect energy drains and gains: active therapies such as aerobic or strength exercise reduced energy levels while passive therapies such as relaxation therapy regenerated energy levels. The largest energy drain (∼20%) was seen after exhaustive, cardiopulmonary exercise testing (CPET), and might be sex-specific.

 

[bobbler]

Ugh that last paragraph claiming passive therapy like relaxation ‘regenerated energy levels’

And someone getting away with that

You know it’s going to try to be used to suggest magic money tree magicking energy if people just did these nonsense things - all based on dodgy methods coercing people to write polite things in diaries or rock a certain box on a questionnaire. It’s all so deceitful whether the person designing these things is even self-aware enough to realise that’s what it’s doing or not.

Can see how it will get used - someone severe enough they can't brush their teeth just didn’t do the ten magic passive therapies that apparently would have made their body work and have energy to do so?

Oh of course those that ill didn’t get a voice on inputting into these things because it’s ’too Hard’ to do it right in a way that wouldn’t harm those people by putting them thru long questionnaires.

As this is really about trying to communicate the disability and limitations, so that those who seem to so struggle to (want to) understand it - and I note when I explain me/cfs to a range of others then some do just ‘get it’ until they have their mind manipulated by this grim wellness bigotry but others just drop-out on the common sense because there is a block on empathy/theory of mind.

And this is clearly an attempt at reframing truth of what the experience of living with the illness is by manipulating vulnerable people to fill out forms that pretend to represent their whole energy use but are very cherry-picked. So I find it quite disturbing. Just like you would if someone was in a toxic job and the employer was allowed to force them only to fill out a form which limited what they could describe or include as their demands and stresses vs eg the standard risk assessment forms that try and cover the full picture by including all demands and how much control or conflicting (contradicting orders) issues someone might actually be dealing with

I don’t know what the intention those behind this think they have but we have to ask does it matter anymore vs what the impact ends up being.

 

[Sean]

Ugh that last paragraph claiming passive therapy like relaxation ‘regenerated energy levels’

The whole energy/fatigue paradigm, and especially 'managing' it, has been a disaster. It has completely derailed understanding and treatment.

 

[Utsikt]

I don’t understand how you can validate a questionnaire by showing correlation with another questionnaire, when all of them suffer from the same flaws.

The purpose of a system it what it does. It very clear that the purpose of this rehabilitation system isn’t to improve the patient’s health, but to get them to report better health.

The obvious flaw with that approach is that it doesn’t have any real life impact on the patients, so we’re just pouring money down the drain (in reality it pays the salaries of the practitioners). Going by Norwegian prices, one month at a rehab centre probably costs 3-4 months of the average income post tax. I would not be surprised if most patients would be better off by just getting the cash in hand.

 

[Yann04]

The purpose of a system it what it does. It very clear that the purpose of this rehabilitation system isn’t to improve the patient’s health, but to get them to report better health.

Sometimes it also feels like a desperate attempts for psychology, occupational therapy etc to be “relevant”.

so we’re just pouring money down the drain (in reality it pays the salaries of the practitioners).

Yup, maybe we should look at that critically.

 

[rvallee]

The obvious flaw with that approach is that it doesn’t have any real life impact on the patients, so we’re just pouring money down the drain (in reality it pays the salaries of the practitioners).

It's basically what they reported here, but disguised it and made a paper out of an irrelevant side show.

The diary thing is a distraction. Having more frequent data is what's useful, especially given how little data traditional trials actually produce, taking the form of a diary is an entirely useless framing. Yes, of course, more frequent data can be useful, if it's accurate and reliable, but generally has too much imprecision given the tiny effects observed, which should make it obvious that very little actually makes a positive difference, while some things do have a negative impact.

But they completely hide the fact that the rehabilitation process is entirely superfluous, a total sideshow. Because their job is to process people for rehabilitation, whether that rehabilitation makes any difference doesn't appear to have ever been part of the process itself.

And someone should take a look at exactly how much money, and time (and patient lives), have been wasted on this obviously pointless obsession. How much money could have been put to productive use? On real research? How much ahead would we be if this junk pseudoscience wasn't, still, being propped up for no reason other than having stated the whole thing, decades ago, by falsely asserting that it should work, and having never accepted that all the evidence clearly shows it doesn't.

And they call this evidence-based medicine.

 

[Sean]

The diary thing is a distraction.

And an unnecessary burden.