Identifying the needs of people with long COVID: a qualitative study in the UK 2024 Miller et al

[Andy]

Abstract

Objectives
To identify the needs of people with long COVID (LC) in the UK.

Design
Qualitative study using the Framework Analysis to analyse focus group discussions.

Participants
25 adults with LC aged 19–76 years including 17 men and 8 women. Average disease duration was 80.1 weeks.

Setting
Eight focus groups were conducted in April 2023 online and in-person at the University of Leeds (UoL), UK. Recruitment routes included advertisement via Leeds Community Healthcare services, the English National Opera Breathe Programme and within the UoL.

Results
Three key themes/needs were identified. (Theme 1) Support systems including community groups, disability benefits, clinical services and employment support should be accessible and tailored to the needs of people with LC. (Theme 2) Research should investigate the physiology of symptoms, new clinical tests and treatment interventions to improve clinical understanding of the condition and symptom management. (Theme 3) Societal awareness should be promoted via local and national initiatives to educate the public about the condition and reduce stigma.

Conclusions
Participants experienced varied and individual challenges to daily life due to LC. There is a need for government acknowledgement of LC as a disability to ensure people with LC have access to disability support and legal protection. Policy development should be patient-driven and acknowledge the individual needs of people with LC in order to improve their quality of life.

Open access, https://bmjopen.bmj.com/content/14/6/e082728

 

[rvallee]

TL;DR: do your job, you're not doing it.

As is tradition.

I'm not sure what to make of government acknowledgement. Governments don't decide those things, medical experts do, and advise governments. For decades they have advised governments to ignore this entirely on the basis that they don't believe in it, and that includes very influential MDs.

Governments don't always respect this advice, but here they have. It's up to the medical profession to take the necessary steps here, if governments don't follow through then people can pressure them with the backing of medical expertise, but right now it works against the patients.

The results reveal a debilitating condition which severely disrupts daily life due to the episodic and turbulent nature of symptoms, post-exertional symptom exacerbation and reduced physical and functional abilities.

We have been saying this literally for decades and were told to fuck off by most medical doctors, including the people who have produced most of the research used to deny its very existence.

Many people with LC experience stigmatisation in society, apathy and a lack of understanding from friends and family due to the ‘invisible’ nature of the condition, with negative impacts on relationships and well-being

This is entirely derived from medicine's denial and cover up. It's not happening in a vacuum, and here features not only medicine's denial and cover up of chronic illness, but its miserable failure to promote a policy of mass reinfections where all the consequences are further denied and covered up.

In the years during the COVID-19 pandemic, 2020–2022, the UK government invested over £220 million in LC action plans designed to improve access to specialist clinics across the country, provide an online recovery programme and train general practitioner (GP) teams.

And have exactly nothing to show for it because of that denial, which has been taken to extreme levels by refusing the 2021 NICE guideline and holding on to obviously failed models.

Three years following the first cases of LC

Four years, but who's counting? Oddly enough, the citation is from 2020, so that's 4 years (call me weird but if a paper is published in mid-2024, they can update a single number properly accounting for time passed since it was put for review), and about Paul Garner.

Despite years of research, it remains unclear whether people with LC feel adequately supported with their condition in 2023.

Because they're not and have said so from the start, the exact same issue with chronic illness before. None of this is hard, in fact it's that it's too easy that makes it extra hard, because this failure has been entirely a choice.

Participants acknowledged the limitations of National Health Service funding and resources and practitioner’s limited medical knowledge of LC due to the novelty of the condition

But this is false, it has nothing to do with the novelty, it's no longer novel, and the refusal is on the basis of decades of failure to recognize chronic illness. It's precisely because this is an old controversy that it's failing all over again. This excuse was old on the first day it was used.

Physiotherapy and occupational therapy were suggested to provide training in breathing techniques, physical exercise and supporting individuals to complete activities of daily living. The need for psychological counselling was highlighted to support people with LC with symptoms related to mental health including depression and anxiety

This is the exact thing that has failed. It's not credible that patients suggested those.

Specifically, participants wanted research to investigate the causes and physiology underlying the common symptoms such as fatigue, breathlessness, post-exertional malaise (PEM) and brain fog and the more unusual symptoms such as dermatological problems

Exactly what has and continues to be resisted by medicine on the basis that they prefer psychosomatic models. PEM remains completely unacknowledged and is a main point of false controversy because so many MDs have decided that medical opinions overrule millions of patient reports and that absence of evidence is positive evidence for an unfalsifiable model.

Drug treatments, cognitive training and physical exercise were suggested as possible interventions to trial, however, it was recognised that there may never be ‘a cure’ for the condition

Again it's not credible that patients suggested the last two. This is the current paradigm and it's a disastrous failure.

There is a section on social awareness and education, and not a single mention in the paper about how this is an old problem that has long been controversial, zero mention of ME/CFS or even the broader phenomenon of post-infectious chronic illness. It's completely unserious to ignore the context when the context is what matters the most.

Participants found that others were dismissive of their symptoms or did not believe the condition existed, leading to judgements that they were ‘lazy’ or ‘overdramatic’ if the condition affected their daily life or ability to work.

This is literally what most MDs think, sometimes even say out loud, because this is what they are told to think, on the basis of sham pseudoscience. Again the fault is 100% within medicine, and the solution can only come from there, as it's largely a cultural problem featuring old myths and failed traditions.

A study that completely ignores the most salient facts about what it's studying is not a scientific study, it's a political cover-up.