‘You’re alive, but are you living?’ Exploring long COVID impact on social and leisure well-being for individuals and caregivers, 2025, Leighton et al

Mij

Senior Member (Voting Rights)

Abstract

Long COVID (LC) affects physical health and cognition, limiting participation in social and leisure activities. As a novel disabling condition following a COVID-19 infection, informal caregivers of those with LC have taken on expanded roles, including educating themselves on this diagnosis.

Gathering insights from people living with LC (PWLC) and their caregivers is crucial for understanding its impact on well-being and identifying targeted rehabilitation practices across the LC care pathway. Utilizing a qualitative descriptive approach, we conducted interviews with 67 participants (52 people with LC and 15 caregivers).

Results: Composite narratives were created to introduce three key themes: (1) The demands of managing physical and cognitive symptoms of LC limit the ability of PWLC and caregivers to engage in social and leisure activities; (2) The loss of meaningful social and leisure activities deepens a diminished sense of identity for PWLC and caregivers; and (3) The absence of shared social and leisure engagement intensifies feelings of disconnection and loneliness for PWLC and caregivers.

The findings support a need for more social- and leisure-targeted interventions for LC rehabilitation to help to optimize efforts for coping with the psychosocial impacts of living with, or caring for someone with, LC.
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Results: Composite narratives were created to introduce three key themes: (1) The demands of managing physical and cognitive symptoms of LC limit the ability of PWLC and caregivers to engage in social and leisure activities; (2) The loss of meaningful social and leisure activities deepens a diminished sense of identity for PWLC and caregivers; and (3) The absence of shared social and leisure engagement intensifies feelings of disconnection and loneliness for PWLC and caregivers.

The findings support a need for more social- and leisure-targeted interventions for LC rehabilitation
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The findings support a need for more social- and leisure-targeted interventions for LC rehabilitation to help to optimize efforts for coping with the psychosocial impacts of living with, or caring for someone with, LC.
Well, the evidence from ME/CFS rehab at NHS specialist clinics suggests they'll be disappointed, if the people with LC they're trying to rehabilitate have ME/CFS:

Collin & Crawley 2017 found that approximately 1 year after patients treated 2014-2016 started attending a specialist clinic offering CBT, GET and activity management:

35% (139/397) of patients reported being able to do more social and leisure activities, 36% (143/397) reported being less able, and 26% (102/397) reported no change.

The reason the percentages do not add up to 100% is because of an anomaly in what Collin & Crawley asked. When it came to reducing activities - and only reducing activities - participants had to choose between whether they did it “due to CFS/ME” or “for other reasons”. The remainder of the 397 in the quote above reported being less able “for other reasons”. So the total percentage who reported reducing social and leisure activities was 39%.

I think the only way they'll achieve their goal with ME/CFS-flavoured LC is if they give them an as-yet undiscovered disease-modifying treatment, or confine themselves to working with those who are spontaneously improving or have dramatically cut activity in another area (e.g. stopped working).
 
There's a lot in common with this framing and how the COVID pandemic, which killed 20M+ and disabled probably somewhere on the order of 50M+, and the way it's mostly framed these days is how it was so unfair and harsh for regular people, people who had the decency not to have pre-existing conditions that burden health care systems with their whiny illnesses, not to be able to be completely free to do what they want, but otherwise doing fine, as if it's the only thing that matters.

It's as if they don't understand overlapping limitations. Like they genuinely can't see any contradiction between asking whether someone is able to walk 100M, then when the answer is no, they will keep asking about things like aerobic exercise and so on. As if not being able to walk 100M did not obviously come with limitations that make sprinting impossible.

And then there's the common, and very odd, assertions about how millions of people, connecting through thousands of individuals on social media, can manage to post... hundreds of messages per day. At the most. All begging for help. And this is framed as basically most of us being able to work. Because obviously clicking on a small icon that posts a "SOMEBODY HELP DAMNIT" message is just as demanding as a full work day.

As if scale doesn't matter, and is a complete mystery. They think that even if a 10 litre object can't fit in a 5 litre container, there's no reason to keep asking about 20-30-50 litre objects, because you never know when some magic could occur. Or something.

It's just so detached from reality. And it's been reported this way literally for decades and it never makes any difference. So why do they even keep asking? When it literally doesn't matter, because inconvenient facts are always pushed aside in favor of magical wishcare.
 
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