The Effects of Messaging on Long COVID Expectations: An Online Experiment, 2022, Mills et al

[Kalliope]

Posts about the preprint of this paper that were on the psychologising Long Covid thread have been merged with the new thread on the paper now published.

 

[Hoopoe]

That study is about as useful as someone finding that water is wet.

 

[Art Vandelay]

All the authors are from the UK Health Security Agency, a government agency.

You can sense that governments are beginning to realise the enormous cost of Long Covid and are thus starting to paint it as psychosomatic. The NIH in the US are doing it too.

 

[Hoopoe]

Clutching the psychosomatic explanation like a magical charm that they believe will protect society. But it won't. It will do the opposite and leave it vulnerable and delay help.

 

[Barry]

Objectives: We examined whether providing different types of information about Long COVID would affect expectations about the illness.

That sentence comes across as utterly moronic! Like examining whether telling patients that their bodies will spontaneously explode in 10 days time will foster different expectations from if they are told they will start sh*tting diamonds 10 days from now. Mind bogglingly dumb.

 

[chrisb]

Is this part of the remit of the "Nudge Unit" or ""behavioural Insights team"?“Nudge Unit” | The Institute for Government

 

[Arnie Pye]

From the paper linked in post #1115 :

The views expressed are those of the author(s) and not necessarily those of the NIHR, UKHSA or the Department of Health and Social Care.

They might as well have said :

The views expressed are those of the author(s) and not necessarily those of the NIHR, UKHSA or the Department of Health and Social Care but we all know they will be once those organisation find out if they save money and allow them to throw people under the bus to starve and die.

 

[Art Vandelay]

All the authors are from the UK Health Security Agency, a government agency.

The web is even more tangled than I first thought. The two lead authors have further affiliations:

 

[Mithriel]

A while ago now, there was a paper done on CFS which involved healthy people having brains scans while imagining being fatigued. Or something like that. It was so jargon laden it was difficult to understand except that imagining you had something like a patient said they experienced was meant to be a scientific way of examining a disease.

It is ironic when a study is done using subjects who imagine what it would be like to be a patient when the researchers involved have never bothered to do it or use any empathy at all.

 

[rvallee]

The web is even more tangled than I first thought. The two lead authors have further affiliations:

This looks less like research and more like manufacturing consent, propaganda straight from a government authority.

 

[hinterland]

 

[Keela Too]

Is this part of the remit of the "Nudge Unit" or ""behavioural Insights team"?“Nudge Unit” | The Institute for Government

I was thinking that on another thread. I wonder is the Nudge Unit subject to FOI?

It might be interesting to find how they are attempting to influence public perception on ME and also on Long Covid.

 

[Andy]

Trial By Error: Does “Long Covid” Need Rebranding As “Ongoing Covid-19 Recovery”?

"Now here’s a paper called “The Effects of Messaging on Expectations and Understanding of Long COVID: An Online Randomised Trial,” from researchers at the UK’s Health Security Agency. Two of the nine authors, including the senior author who conceived the study, are also affiliated with a National Institute for Health Research unit that partners with a King’s College London team led by Professor Sir Simon Wessely.

This paper is a pre-print, posted before peer review—so we have no idea what will happen once it undergoes more scrutiny. But the research appears designed to reinforce the notion that psychological and emotional responses to public discussion and framing of post-Covid-19 symptoms could account for much of what patients report about their own condition."

https://www.virology.ws/2022/01/26/...need-rebranding-as-ongoing-covid-19-recovery/

 

[Andy]

Merged thread - paper now published

Abstract

Objective: We examined whether varying information about long COVID would affect expectations about the illness.

Method: In October 2021, we conducted a 2 (Illness Description: long COVID vs. ongoing COVID-19 recovery) × 2 (Symptom Uncertainty: uncertainty emphasized vs. not emphasized) × 2 (Efficacy of Support: enhanced vs. basic support) between-subjects randomized online experimental study. Participants (N = 1,110) were presented with a scenario describing a positive COVID-19 test result, followed by one of eight scenarios describing a long COVID diagnosis and then completed outcome measures of illness expectations including: symptom severity, symptom duration, quality of life, personal control, treatment control, and illness coherence.

Results: We ran a series of 2 × 2 × 2 ANOVAs on the outcome variables. We found a main effect of illness description: individuals reported longer symptom duration and less illness coherence when the illness was described as long COVID (compared to ongoing COVID-19 recovery). There was a main effect of symptom uncertainty: when uncertainty was emphasized, participants reported longer expected symptom duration (p < .001), less treatment control (p = .031), and less illness coherence (p < .001) than when uncertainty was not emphasized. There was a main effect of efficacy of support: participants reported higher personal control (p = .004) and higher treatment control (p = .037) when support was enhanced (compared to basic support).

Conclusions: Communications around long COVID should avoid emphasizing symptom uncertainty and aim to provide people with access to additional support and information on how they can facilitate their recovery.

Open access, https://psycnet.apa.org/fulltext/2023-01185-001.html

 

[Andy]

"Also, the label given to symptoms can influence perceived symptom severity and participants’ expected well-being (Copp et al., 2017; Petrie et al., 2018). Furthermore, labeling a new syndrome (such as long COVID) could increase illness identity (the degree to which a chronic illness becomes part of one’s identity), which may in turn reduce quality of life (Moss-Morris et al., 1996)."

That last reference is to Moss-Morris, R., Petrie, K. J., & Weinman, J. (1996). Functioning in chronic fatigue syndrome: Do illness perceptions play a regulatory role?British Journal of Health Psychology, 1(1), 15–25. https://doi.org/10.1111/j.2044-8287.1996.tb00488.x

 

[Arnie Pye]

"Also, the label given to symptoms can influence perceived symptom severity and participants’ expected well-being (Copp et al., 2017; Petrie et al., 2018).

I've had this affect me. I've described serious and severe symptoms to a doctor and they downplay and trivialise what I've said when they bother recording anything in my medical records.

 

[rvallee]

I keep hearing about how psychology is better nowadays than the rowdy era of the Stanford prison experiment and all the other stuff. And yet.

Just tell the damn truth. That uncertainty is a direct product of systemic failure, it's all your responsibility and obviously lying more is not going to improve problems caused by decades of lying, obfuscation and denial of reality. This is just pseudoscience.

 

[Esther12]

I wondered who would think that this was a piece of research that could support the claims made, and then saw that most of the authors were from the Behavioural Science and Insights Unit.

A decade ago I'd have thought that this would be a valuable example of how bad things can be. I've since seen that none of those examples have been of value!

 

[Esther12]

The participants were chosen to not have any personal experience that might influence their managed imaginings ("We excluded those that had a positive COVID-19 test result to avoid results being influenced by participants’ prior personal experiences of COVID-19 or long COVID")

When these participants then said what the authors wanted, they'd probably done good imagining. When they didn't, maybe that was because they had trouble doing good imagining?

However, this study did not find any differences between expected quality of life or expected symptom severity in any of the conditions. One explanation for this could be that the other measures, such as expected symptom duration, illness coherence, and personal and treatment control, may be easier to imagine than one’s expected quality of life. This could be due to the hypothetical nature of the experiment, which may have made it difficult for participants to extrapolate to a real-world context. Additionally, quality of life can be influenced by a myriad of factors, including stress or depression (that often accompany physiological conditions [Pagnini, 2019]), which may also have made it more difficult for participants to accurately imagine their expected quality of life following a long COVID diagnosis.

 

[Art Vandelay]

The preprint was discussed in the BPS attempts at psychologizing Long Covid thread here.
Now moved to this thread.

The authors all work for the UK Health Security Agency and some at Wessely's NIHR unit.

David Tuller's take: https://www.virology.ws/2022/01/26/...need-rebranding-as-ongoing-covid-19-recovery/