Mixed methods study of views and experience of non-hospitalised individuals with long COVID of using pacing interventions, 2024, McMullan et al

Mixed methods study of views and experience of non-hospitalised individuals with long COVID of using pacing interventions

Christel McMullan, Shamil Haroon, Grace Turner, Olalekan Lee Aiyegbusi, Sarah E Hughes, Sarah Flanagan, Anuradhaa Subramanian, Krishnarajah Nirantharakumar, Elin Haf Davies, Chris Frost, Louise Jackson, Naijie Guan, Yvonne Alder, Amy Chong, Lewis Buckland, Felicity Jeyes, David E. Stanton, Melanie Calvert

Abstract
Background: Long COVID is highly prevalent and debilitating, with key symptoms including fatigue, breathlessness, and brain fog. Pacing is an approach to energy conservation used to help people with chronic conditions like ME/CFS manage the impact of their condition, and could be a useful strategy for people with Long COVID. The aim of this study was to explore the views and experiences of non-hospitalised adults with Long COVID of pacing as an intervention.

Methods: This mixed methods study is part of the Therapies for Long COVID (TLC) Feasibility trial. A feasibility questionnaire was developed for participants. In addition, semi-structured interviews were conducted with a sub-sample of participants at the end of the study and these interviews were analysed using the reflexive thematic analysis approach.

Results: 28 participants completed the feasibility questionnaire and 19 participants took part in a qualitative interview. Participants found that pacing helped improve motivation and activity planning. Concerns included challenges due to time constraints, complexity of the intervention, and limited instructions.

Conclusion: Pacing for Long COVID may offer potential benefits and is feasible but further research is required to demonstrate its benefits. Overall, research on pacing in the context of Long COVID has the potential to enhance our understanding of symptom management and rehabilitation strategies for this emerging population.

Link (Scientific Reports) [Under Review]
https://doi.org/10.21203/rs.3.rs-4459921/v1

 

No mention of PEM.

 

I have skimmed the first sections, and I’m not confident that the authors actually know what pacing is, its context with regards to ME/CFS, what PEM is, and importantly how to teach a new patient how to pace. They just asked them either:

1. Use an app called Spoonie
2. Watch a video by Gez Medinger
3. Read a small book on pacing
4. Use the NHS «Your COVID Recovery» webpage

Pacing is not something you can just do. For many, it requires a complete overhaul of your entire life and you’ll need lots of help from family or others around you. Without providing guidance by an experienced patient or practitioner and the necessary help through social services etc., you will never be able to properly test if pacing is beneficial. You’ll only be testing if doing your best under your circumstances is beneficial. Yet the circumstances are key. So they didn’t test pacing per se, they tested leaving the patients to themselves.

 

These are the concerns about pacing by the participants. If they had bothered to talk to someone with ME/CFS first, they would have gotten the same info in a much more convenient way.

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Concerns about pacing interventions

Despite the positive comments, participants had some concerns about using the pacing interventions, mainly because of family/work commitments, the Long COVID symptoms, the lack of instructions and advice on pacing, content not relevant enough to pacing, and app fatigue.

Family demands, work commitments

While several participants acknowledged that pacing was useful in theory, they also highlighted the fact that the pressures of everyday life (work, family, and unexpected events) made pacing difficult and they struggled to commit to it:

“I have mixed success with pacing due to family demands” (67 – video)

“No one can pace their whole life… there are still unexpected events, deadlines to be met (e.g., tax, accounts) and family demands” (118 – video)

“Pacing is great in theory however life is demanding and there are lots of pressures such as work, parental responsibility, managing symptoms and extreme fatigue” (264 – app)

Impact of Long COVID symptoms

Some participants reported that their Long COVID symptoms impacted how they used the pacing book:

“It is a lot of information and difficult to apply with brain fog and around work” (117 – book)

Similarly, some participants commented on the time it took them to watch the video, especially when suffering from fatigue.

Limited instructions/advice on pacing

Although most understood the instructions included with each intervention, some of the participants who used the Spoonie Day app felt that there were not enough instructions on how to use it:

“There weren’t many instructions – I wasn’t sure what to do and the number of spoons did not match how I felt” (30 - app)

“I found it very difficult to figure out the correct" pacing just with the booklet. I would have appreciated a face-to-face explanation by someone who is experienced” (257 – book)

“The video does not give enough simple practical advice on pacing. I have been trying to pace my activity, which is low (I can’t work) and with a lot of resting but I am still crashing with my symptoms without a real understanding of why (sometimes I do more and don’t crash, sometimes I do crash, sometimes I crash for a day or two, sometimes for more than a week). The video is not in enough depth for me to deal with this sufficiently and learn more” (278 – video)

Content not relevant enough to fatigue

Several interviewees admitted not using the Spoonie Day app much or not at all because they felt it was not relevant enough to fatigue:

“I didn’t use the app much, I designed my own spreadsheet and made it more about fatigue” (105 – app)

Not a mobile app user

Some participants admitted not using mobile app:

“I realised I had used this app before, I didn’t like it, I I’m not a huge app fan anyway” (87 – app)

 

I'm not sure there's much value in researching this. It's such a flexible approach that is both simple and easy in itself. The entire difficulty comes from outside of pacing itself, from the illness, and demands from real life, which just goes on.

It can't really be formalized, or optimized. And for the most part it's useless in itself if the demands of life make it impossible, especially for those who simply can't function. It requires extra adaptations from home, work, family, obligations, and so on. None of this is medical, it's not what they do.

Medicine really has to bring the concept of convalescence back. This is mainly what it's about, except it's open-ended. There is no clear path to recovery, nothing that can be monitored or assessed at time-points.

Ironically, it's basically a holistic approach. And it's precisely what makes it unsuitable for medicine to understand, that despite all the boasts and promises of biopsychosocial this and that, they just can't think or function holistically, simply because most of what happens in the life of someone with PEM will happen outside of medical facilities, and outside of the "medical gaze" (weird term but whatever they like it).

It's more or less a "winging it" approach. There is no formula, no secret to it. It requires the highest level of flexibility and adaptation, precisely what can't be put down in a format that medicine traditionally uses, such as guidelines and teaching modules. It's a general skill requiring general psychological flexibility, the absolute opposite of specialist knowledge.

 

In a sane world with healthy functioning institutions, it would make a huge difference.

Alas.

 

Ugh. I've never seen anyone frame pacing as helping "improve motivation and activity planning". Out of easily tens of thousands of comments, never even once. It probably happens, but not organically. It's literally all about reducing PEM, not making the symptoms worse, and making it possible to keep on existing. I have no idea where they got this from, but it wasn't from patients.

Also the challenges and concerns have nothing to do with pacing, it's with the illness, the symptoms, the disability, PEM! Pacing is not a treatment, even less so an intervention. It's not a silver bullet, it doesn't reduce challenges and concerns.

But especially, the biggest issue with pacing is explicitly that too often it's not feasible. Not anymore than the average person could buy a private jet. It's feasible to buy a private jet. There is a literal industry of people building and selling private jets, but for most people it's just not realistic, even though it's feasible in the sense that some people can and indeed to purchase and run private jets for themselves.

Always I keep seeing the same problem of managed conversations essentially derailing their entire value of those studies. The themes discussed almost never manage to capture what the participants are telling them, because they are selected by people who have been trained to think in ways where no one of this fits. Everything is interpreted out of multiple filters, none of which are adequate for this purpose.

At this point we could literally just have as many people suffering from the illness just write down freely anything and everything, and have some LLM collate and interpret it. It would be 100x more useful than when the same information is distorted by clinicians and academics who have no ability to relate to what they are hearing and then badly interpreting, or have to cram it in some form of standard academic paper. Simply reading the selected quotes makes it all very clear, but neither academia nor medicine work like that, neither have the ability to use this information correctly.

One major difficulty here is in trying to make something simple but extremely hard into something complex but easy. It just doesn't work like this. The problem with pacing is not pacing, it's PEM. And there is no formula that can be applied, no teaching material that will make the simple-but hard-thing become complex-but-easy. This is bad academic brain meets even worse clinical brain. No matter how hard you try, you cannot feed 20 people with a single standard loaf of bread, which is about as realistic.

 

Best I can tell it's from a single comment. The comment is fine, even if I don't interpret it the same way they did, but taking this one comment and making it into a theme worth putting in the abstract is pretty odd.

Raw comments from participants aren't available, so I don't know if there is more than one, but what's quoted in the paper definitely isn't glowing anyway.