Using time diaries to inform occupational therapy practice for people with [ME/CFS]: An exploratory study, 2025, Roxburgh et al

[forestglip]

Using time diaries to inform occupational therapy practice for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An exploratory study

Rachel Roxburgh, Julie Hughes, Wendy Milgate

Introduction
Myalgic encephalomyelitis/chronic fatigue syndrome affects an individual’s occupational participation. There is little understanding in Australia of occupational interventions for myalgic encephalomyelitis/chronic fatigue syndrome. This study explored how Australian adults with myalgic encephalomyelitis/chronic fatigue syndrome use their time and whether the National Institute of Health Activity Record can inform occupational interventions.

Method
Using a convergent mixed method, nine participants completed the National Institute of Health Activity Record time diary and five survey questions exploring clinical utility and the impact of myalgic encephalomyelitis/chronic fatigue syndrome. Data analysis included descriptive statistics for time-use data and an inductive thematic analysis for survey responses.

Results/Findings
Participants (aged 29–59 years) reported 58% of their time was spent awake and in recreation and leisure occupations. Quantitative data reflected no statistically significant change in participants’ symptoms, performance and motivation throughout the day. Six themes emerged from the qualitative data that highlighted participants’ experiences completing the National Institute of Health Activity Record and the impact of myalgic encephalomyelitis/chronic fatigue syndrome on their time-use.

Conclusion and Relevance
The National Institute of Health Activity Record provided insights into a participant’s time-use, which could inform occupational interventions. Modifying the National Institute of Health Activity Record format would improve usability for participants and reduce time for completion. Discussing results and extending the data collection period may capture the impact and fluctuations of myalgic encephalomyelitis/chronic fatigue syndrome more accurately.

Link | PDF (British Journal of Occupational Therapy) [Open Access]

 

[Utsikt]

There is something very paternalistic about this kind of research.. Let them spend their time how they want and don’t treat them like animals to be studied and observed.

They tried to spin the critique positively:

Qualitative results
Theme 2: Completing the time diary spreadsheet
Participants expressed a range of perspectives about completing the NIH ACTRE, with most reflecting the experience was:

Time-consuming . . . (Sandra).
. . .intensive and hard to complete. . . (Janet).
​

Participants also shared ideas that could be utilised to improve the NIH ACTRE.

. . .a bit difficult as I didn’t purely do one thing each half hour (Joan).

. . .would have liked space to provide clarifying comments. . . [as] life with ME/CFS is far more nuanced than the activity record allows for. . . (Sandra).​

 

[jnmaciuch]

Use of the NIH ACTRE could identify opportunities for self-management of change. Occupational therapists could also facilitate opportunities to explore a person’s time-use and, as a result, enable people to be more self-directed and in control of their health management options.

These findings raise an important issue around interpreting what constitutes ‘rest’, as this varied widely amongst the participants. For example, many participants used extended blocks of sedentary recreational activities (e.g. Netflix) to rest, though using these activities to rest is not in keeping with its definition of ceasing activities to restore energy (Bernhofer, 2016). As fatigue is a key symptom that impacts occupations, it is important to ensure that rest is seen as ceasing activity rather than seated activity. Therefore, there may be value in occupational therapists having conversations with people living with ME/CFS to discuss what rest is, the value and purpose of resting, the value of being and feelings surrounding this and how this compares to a person’s perspective of rest (Nurit and Michal, 2003). These discussions could lead to potential interventions, such as energy conservation (Hughes, 2009; Rubal and Iwanenko, 2004).

I don’t have much constructive to say about this but my main takeaway from interacting with therapists, doctors, OTs, sleep therapist, etc etc etc was just the insistence that I could make my life much better through more discipline.

Just the deep seated need to believe that my inability to work was due to some failure of time/energy management.

Because I could watch TV sometimes so clearly if I was disciplined enough and managed my “restful periods” enough, I could totally manage 4-6 hours of cognitively intense academic work per day.

 

[Jonathan Edwards]

They don't seem to have learnt that occupational therapy has had nothing to do with 'occupation' since 1975.

 

[Yann04]

It feels like the rehabilitation/psychology/psychiatry fields are desperate to make themselves relevant to ME/CFS.

I’m sure this could be useful to small subset of pwME. Probably especially children with mild or moderate forms of the condition.

But to the average person. All we need to know is what PEM, how to avoid it, and have the support to continue well surviving even if we have to limit activity. Not to spend loads of time and precious energy on a therapy diary.

 

[rvallee]

I just don't see any possible use for this kind of research. It's clearly premised on the idea that someone can 'teach' us how to better use our time, but that's just delusional. Similar premise behind giving financial classes to people who live in deep poverty. Poverty is almost never a problem of poor finances, and teaching personal finances to poor people serves absolutely no useful purpose. Other, possibly, than providing low-wage work for some poor sod who has a personal finances teaching certificate, or whatever.

How do poor people spend their money? What if they spent it differently? Maybe if they optimized the value of how they organize their time and made different financial choices? None of this matters if you don't have money. Well, it does matter, poor people don't have a choice and most are doing everything they can, but it's almost never a solution to the problem. The questions they are asking have nothing to do with the problem, only has to do with their profession, not our needs.

It would be so much less insulting if there hadn't been this fashionable BS over the last few years over "patient-centered medicine" and other MBA buzzwords. Almost nothing done about us has anything to do with what we need, everything is about them, for them, what they can do. All of it is wasted.

 

[MrMagoo]

If only people would follow these regimented rules about how to divide up their time and energy. Then the researchers could do an evaluation on what difference it makes, they could study the degree of improvement That could be measured against the effort expended to prove its worth doing!!!But the poor researchers will never find the perfect group of patients who will do it right. Oh well, if the b’stards don't want to get better, then what can you do.

 

[MrMagoo]

Can you imagine the reaction of a psychiatrist if they heard you were rigidly monitoring yourself to this extent? Sounds like type-A personality and perfectionism is at play!

 

[SNT Gatchaman]

Across the 2 days, participants spent an average of 58% of their time awake. Within this time, participants recorded their time spent across eight occupational categories. On average, participants spent 2% on planning and preparation, 2% on transporting, 2% on treatment, 8% on working, 10% on household activities, 19% on self-care, 22% on resting and 37% on recreation and leisure (Figure 1). For time spent in recreation and leisure activities, 12–65% of these activities were seated activities and included reading, crafts, watching TV/Netflix, video games, or engaging with social media. Participants’ active recreational activities only accounted for 0–11% of activities, including shopping, baking and walking.

These are percentages of the 58% spent awake: 2+2+2+8+10+19+22+37 = 102%.

The casual reader might look at that and think "gosh 8% of my day working, 22% resting and 37% recreation and leisure — I'd like to have this 'illness'."

 

[MrMagoo]

These are percentages of the 58% spent awake: 2+2+2+8+10+19+22+37 = 102%.

The casual reader might look at that and think "gosh 8% of my day working, 22% resting and 37% recreation and leisure — I'd like to have this 'illness'."

Maybe they’re auditioning for X-factor and giving it 101%

Isn’t 42% of time asleep quite a lot? Doesn’t the average person sleep about 35% (8 ish hours) and this is closer to 10

who has a job where they work less than an hour a day

these averages are just skewed nonsense aren’t they