Long COVID and episodic disability: advancing the conceptualisation, measurement and knowledge of episodic disability..., 2022, O'Brien et al

Full title: Long COVID and episodic disability: advancing the conceptualisation, measurement and knowledge of episodic disability among people living with Long COVID – protocol for a mixed-methods study

Abstract

Introduction As the prevalence of Long COVID increases, there is a critical need for a comprehensive assessment of disability. Our aims are to: (1) characterise disability experiences among people living with Long COVID in Canada, UK, USA and Ireland; and (2) develop a patient-reported outcome measure to assess the presence, severity and episodic nature of disability with Long COVID.

Methods and analysis In phase 1, we will conduct semistructured interviews with adults living with Long COVID to explore experiences of disability (dimensions, uncertainty, trajectories, influencing contextual factors) and establish an episodic disability (ED) framework in the context of Long COVID (n~10 each country). Using the conceptual framework, we will establish the Long COVID Episodic Disability Questionnaire (EDQ). In phase 2, we will examine the validity (construct, structural) and reliability (internal consistency, test–retest) of the EDQ for use in Long COVID. We will electronically administer the EDQ and four health status criterion measures with adults living with Long COVID, and readminister the EDQ 1 week later (n~170 each country). We will use Rasch analysis to refine the EDQ, and confirm structural and cross-cultural validity. We will calculate Cronbach’s alphas (internal consistency reliability), and intraclass correlation coefficients (test–retest reliability), and examine correlations for hypotheses theorising relationships between EDQ and criterion measure scores (construct validity). Using phase 2 data, we will characterise the profile of disability using structural equation modelling techniques to examine relationships between dimensions of disability and the influence of intrinsic and extrinsic contextual factors. This research involves an academic–clinical–community partnership building on foundational work in ED measurement, Long COVID and rehabilitation.

Open access, https://bmjopen.bmj.com/content/12/3/e060826

 

seems like some one wants to create a new system to deny any benefits to people with fluctuating health conditions . having a few relatively less awful days does not mean society is going to magically make you employable .

 

Yup. And another long hauler who was involved in the Body Politic papers. Also the unofficial expert on Long Covid in Canada, Cheung, who seemed to have learned well enough about it, understands the relation to ME.

Although I'm not sure of the necessity of creating new language about episodic something, there's already existing language that works fine in relapsing-remitting. It's commonly used and applies well here. Especially as for many pwLC and pwME, it's not episodic or relapsing-remitting, it's just on all the time. So this language may obscure the fact that it's not just good days and bad days, many have not had a single "good day" from day 1.

And that's also true long term, I haven't had a good day in years. This is not necessarily episodic and it's crucial to be mindful of how the language can be misused, it's almost guaranteed to be.

 

Ramsay spoke about ME as a disease defined by variability over hours, days weeks and months. I felt that longcovid was like ME because they were describing the same variability.

It is not the same as relapsing/remitting where it goes away for a while and comes back. I can have a very painful shoulder in the morning, be unable to speak a few hours later and feel nauseous for a while in the evening.

This was used against us. One of the wessely crew said that if a symptom disappeared it meant there was no reason why it could not go away forever.

It is one reason why mild ME is not really mild. These patients can be unable to get out of bed for a few days or be able to keep on working if they do nothing else; effectively housebound at those times.

Then PEM makes everything unpredictable as well. (The very severe are so bad that it is hard for them to have varying symptoms.)

MS is different. It gets worse gets better but the timescale is bigger than for us.