How Long is Long COVID? Evaluation of Long-Term Health Status in Individuals Discharged from a Specialist Community Long COVID Service, 2024, Sivan+

Nightsong

Nightsong

Senior Member (Voting Rights)
Now published: link here


Preprint
Background: Post COVID-19 syndrome or Long Covid (LC) is a novel fluctuating condition with a protracted course in some patients. Specialist LC services have been operational in the UK since 2020 and deal with a high caseload of patients. Aims: To evaluate long-term outcomes in patients discharged from a community-based LC specialist service.

Methods: A service evaluation study that included patients who were well engaged in the services [completed the standard Patient Reported Outcome Measures (PROMs) and received intervention from clinician(s)] and had been discharged for at least 3 months from the service. They consented to the study and completed standard PROMs: COVID-19 Yorkshire Rehabilitation Scale (C19-YRS), EQ-5D-5L, and National Institute for Health and Care Excellence (NICE) criteria for Myalgia Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS).

Results: Out of 460 patients contacted, 112 (average of 37.6 months since infection and 9.8 months post-discharge) completed the PROMs. 90.2% patients continued to experience LC symptoms and disability and had not returned to their pre-COVID health status. The average EQ-5D-5L index score was 0.53 (SD 0.29) highlighting a significant disability and that LC had become a long-term condition (LTC) in majority of patients who responded to the survey. 43% patients met the criteria for suspected ME/CFS.

Conclusion: A proportion of LC patients develop Persistent Long Covid (PLC) consistent with a LTC and had a significant overlap with ME/CFS.

https://www.preprints.org/manuscript/202409.0813/download/final_file
 
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Technically, it lasts as long as they allow it, until they decide to do something competent about it and end it. So it's one of those things where the outcome is determined by the behavior is determined by the outcome and so on and on like a mutually interacting force.

By choosing to do nothing, nothing competent anyway, it will last a lifetime for millions (although since all health care thinking is local, it's in however many people happen to have it under that jurisdiction). Having made different choices in the past, it wouldn't even have happened, would be trivial to treat.

All choices. Almost always the wrong ones.
 
As many as 43% of participants with ongoing Long Covid symptoms continue to experience symptoms which may fit with a suspected ME/CFS diagnosis and would warrant further assessment, reporting significant ongoing symptoms for more than 3 months of debilitating fatigue, post exertional malaise, unrefreshed sleep and cognitive difficulties as described by NICE (2021) [21]. This is generally in keeping with the high prevalence of ME/CFS within Long Covid populations in the literature with studies reporting 45.2% - 58% of LC patients fitting this criteria [33,34].

The NICE guidelines criteria for ME/CFS (2021) [21] were used in this study however we found the wording of the first question confusing and unclear to participants and it was discovered that although many participants had fatigue scored on other PROMs they had not selected the first item on debilitating fatigue in the NICE ME/CFS criteria. Whilst recent studies have used the IOM or the CCC criteria to identify the prevalence of ME/CFS in those with Long Covid, we used the UK NICE Guidelines criteria as these are more widely used within our local services [35,36]. We were also mindful of the time taken to complete additional long questionnaire particularly in this population with fatigue and cognitive difficulties as their most frequent challenges
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NICE Criteria for ME/CFS
All of these symptoms should be present to meet the NICE criteria for ME/CFS [21]:

• Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.

• Post-exertional malaise after activity in which the worsening of symptoms:
is often delayed in onset by hours or days
is disproportionate to the activity
has a prolonged recovery time that may last hours, days, weeks or longer.

• Unrefreshing sleep or sleep disturbance (or both), which may include:
feeling exhausted, feeling flu-like and stiff on waking
broken or shallow sleep, altered sleep pattern or hypersomnia.

• Cognitive difficulties (sometimes described as ‘brain fog’), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

Patients were given the option of either completing the questionnaire and returning it by post or completing them with a clinician during a phone call. Patients had to re-confirm their participation in the service evaluation in the relevant section of the questionnaires.
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This is the first time I’ve come across ‘Persistent Long Covid’ as a term. When people are prefixing an existing term with more synonyms, that seems like a bit of a red flag.

What’s next? Unremitting persistent long covid? Chronic unremitting persistent long covid? Chronic unremitting persistent long covid syndrome?
 
Now published

How Long Is Long COVID? Evaluation of Long-Term Health Status in Individuals Discharged from a Specialist Community Long COVID Service
Bodey, Rochelle; Grimaldi, Jennifer; Tait, Hannah; Godfrey, Belinda; Witton, Sharon; Shardha, Jenna; Tarrant, Rachel; Sivan, Manoj

BACKGROUND
Post COVID-19 syndrome or long COVID (LC) is a novel fluctuating condition with a protracted course in some patients. Specialist LC services have been operational in the UK since 2020 and deal with a high caseload of patients.

AIMS
To evaluate long-term outcomes in patients discharged from a community-based LC specialist service.

METHODS
A service evaluation study that included patients who were well engaged in the services [completed the standard Patient Reported Outcome Measures (PROMs) and received intervention from clinician(s)] and had been discharged for at least 3 months from the service. They consented to the study and completed standard PROMs: COVID-19 Yorkshire Rehabilitation Scale (C19-YRS), EQ-5D-5L and National Institute for Health and Care Excellence (NICE) criteria for myalgia encephalomyelitis/chronic fatigue syndrome (ME/CFS).

RESULTS
Out of 460 patients contacted, 112 (average of 37.6 months since infection and 9.8 months post-discharge) completed the PROMs. Of these, 90.2% patients continued to experience LC symptoms and disability and had not returned to their pre-COVID-19 health status. The average EQ-5D-5L index score was 0.53 (SD 0.29), highlighting a significant disability and that LC had become a long-term condition (LTC) in the majority of patients who responded to the survey. Of these patients, 43% met the criteria for suspected ME/CFS.

CONCLUSIONS
A proportion of LC patients develop persistent long COVID (PLC) consistent with a LTC and had a significant overlap with ME/CFS.

Link | PDF (Journal of Clinical Medicine) [Open Access]
 
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Someone really has to look into why they have such abysmal response rates and change this. Having barely a quarter of data is close to useless as the void of data will always be used to minimize and offer alternative explanations, arguing the classic "don't come back to the clinic" = recovered.

As in the profession really has to tighten up their methodologies. It's basically standard, and there's never any insight into why this is happening. I interpret "lost to follow-up" as a failure, but it's basically just an indifferent shrug that no one ever looks into.

Because judging from the general opinions about such clinics on social media, the most likely explanation is that people see this as a waste of time because it won't improve anything.
 
hotblack said:
This is the first time I’ve come across ‘Persistent Long Covid’ as a term. When people are prefixing an existing term with more synonyms, that seems like a bit of a red flag.

What’s next? Unremitting persistent long covid? Chronic unremitting persistent long covid? Chronic unremitting persistent long covid syndrome?
Click to expand...
It makes some sense, if we call LC anything that lingers more than a few weeks, then chronic LC (or long long Covid, heh) is when it lasts long enough to be a chronic illness, like a year or more.
 
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