More Than 100 Persistent Symptoms of SARS-CoV-2 (Long COVID): A Scoping Review, 2021, Hayes et al

Background: Persistent coronavirus disease 2019 (COVID-19) symptoms are increasingly well-reported in cohort studies and case series. Given the spread of the pandemic, number of individuals suffering from persistent symptoms, termed ‘long COVID', are significant. However, type and prevalence of symptoms are not well reported using systematic literature reviews.

Objectives: In this scoping review of the literature, we aggregated type and prevalence of symptoms in people with long COVID.

Eligibility Criteria: Original investigations concerning the name and prevalence of symptoms were considered in participants ≥4-weeks post-infection.

Sources of Evidence: Four electronic databases [Medline, Web of Science, Scopus, and the Cochrane Central Register of Controlled Trials (CENTRAL)] were searched.

Methods: A scoping review was conducted using the Arksey and O'Malley framework. Review selection and characterisation was performed by three independent reviewers using pretested forms.

Results: Authors reviewed 2,711 titles and abstracts for inclusion with 152 selected for full-text review. 102 articles were subsequently removed as this did not meet inclusion criteria. Thus, fifty studies were analysed, 34 of which were described as cohort studies or prospective cohort studies, 14 were described as cross-sectional studies, one was described as a case control study, and one was described as a retrospective observational study. In total, >100 symptoms were identified and there was considerable heterogeneity in symptom prevalence and setting of study. Ten studies reported cardiovascular symptoms, four examined pulmonary symptoms, 25 reported respiratory symptoms, 24 reported pain-related symptoms, 21 reported fatigue, 16 reported general infection symptoms, 10 reported symptoms of psychological disorders, nine reported cognitive impairment, 31 reported a sensory impairment, seven reported a dermatological complaint, 11 reported a functional impairment, and 18 reported a symptom which did not fit into any of the above categories.

Conclusion: Most studies report symptoms analogous to those apparent in acute COVID-19 infection (i.e., sensory impairment and respiratory symptoms). Yet, our data suggest a larger spectrum of symptoms, evidenced by >100 reported symptoms. Symptom prevalence varied significantly and was not explained by data collection approaches, study design or other methodological approaches, and may be related to unknown cohort-specific factors.

Open access, https://www.frontiersin.org/articles/10.3389/fmed.2021.750378/full

 

I didn't see any mention of 'COVID toe', which I and some others have had and which is reported in some places.

Referred to here:

The biology of coronavirus COVID-19 - including research and treatments | Page 76 | Science for ME (s4me.info)

 

Multiplicity of symptoms is something that the medical profession seem to find difficult to cope with. Certainly with ME it is considered as a justification for regarding it as psychogenic, and if I remember correctly some regard individuals having a number of diverse symptoms as a feature of MUS, when used as a pseudo psychiatric diagnosis. There almost seems to be a belief that the more diverse symptoms a patient displays the more likely they are to be making things up.

Does it relate to how modern medicine has developed with a focus on specialisms and specialists aligned with individual biological systems?

Given the overlap between ME and Long Covid, variability between and within individuals ought to have been expected. However even in this article, rather than recognising this variability as a feature of the condition that needs to be understood, they are seeking to explain it away as an artefact of the data collection.

 

I think it is over four which is ridiculous. Derek Pheby asked for money to find out what symptoms people with ME actually had but he was refused and we got PACE instead. Most of our troubles come from a complete lack of understanding of patient experience so it can only be good for them to try to see what longcovid means to people.

 

Many of those symptoms are present in the acute phase. But they wouldn't know that because it would require listening to the patients and taking their reports as useful information outside of the specific context of in-patient admission. In the acute phase of an infectious illness, medicine has only one thing in mind: does it need medical care? If not, go home. So they miss almost all of what is happening in all but very specific cases requiring hospitalization. They miss almost everything that's happening so of course they don't know this even though they could if they just bothered paying attention. This is simply a matter of questions unasked remaining unanswered, even though the patients are really insistent about pointing out those unasked questions.

There are many cases of Long Covid, although they are the minority, where there is no discontinuation of symptoms at all. The ME-like symptoms are there from the start, heavy and disabling. Yes, the pause of several weeks is pretty common, but it's not universal. And this is where medicine's obsession with one thing that describes it all blunders and fails. The most common scenario is not the only scenario, just as a disease affecting more women than men does not make it a women's disease.

There are consequences to medicine largely ignoring most symptoms reported by patients. This is one of those. Discarding input right at its origin is the most counterproductive thing to do with information. So of course it's the standard, because otherwise things wouldn't be completely broken. And so here we are, physicians puzzled by new information that patients keep throwing at them but it's always new regardless.

 

I wonder how true this is of other conditions. Does medicine see only what are regarded as the key symptoms and everything else is disregarded? What happens with say MS or MND (ALS): is it that once a diagnosis is made the range and variability of symptoms just disappear from a medical perspective? Does this explain the obsessive focus on fatigue in ME, given that fatigue is seen as the key symptom, so once there is an ME/CFS diagnosis everything else is ignored?

 

My friends with MS find that the MS nurse is better at helping them with the odder problems than the doctor but they also get more symptomatic care because they are more likely to be believed than us.

Ironically, most of them would like help with fatigue!

 

Yes, basically, we tend not to focus on them until the patient brings them up, we tend to concentrate on the presenting problem to the client and what we can do about out it (Or not - depending on knowledge and experience, if we have no idea but hits a threshold of whatever the Person/Doctor feels is his duty of care/anxiety/empathy level - they will start thinking about it, start researching or asking colleagues). In community psychiatry we usually become the doctor solely monitoring our clients physical health. GP’s often have short appointments and much demand for through-put.

 

I see the exercise of counting symptoms as completely facile because we use symptoms for a range of different purposes and which ones are relevant depends on the purpose but the number is irrelevant.

The first task is to work out what we think is wrong. That is usually dependent on a combination of certain key symptoms being present and others not, together with details of time course and distribution. This bit is much mike bird watching - you look for the presence of certain key features in specific patterns and the absence of others. Not all examples have all features - young birds and birds out of season are different, but that is built in to the recognition system.

The second task is to identify symptoms that actually bother the patient - pain, sleep deprivation, disfigurement and so on. You evaluate the need to deal with each separately.

The third is looking for symptoms that alert one to what might happen later. A high blood pressure is the best example - it can predict kidney damage or stroke.

I cannot see any point in just counting symptoms. Nobody ever suggested doing things like that in medicine until the current age where people just write stuff for the sake of writing stuff.

 

If it's not done systematically I don't see how it could be useful. If it were done systematically it very likely would, but it wouldn't be obvious until it's done systematically for long enough, and it isn't done since it hasn't been done yet and therefore not judged to be useful, since the usefulness doesn't exist until it's done properly.

Dunning and Kruger had something to say about this. It's not about intelligence, it's about not knowing something until we actually know it well enough to be able to tell if it's useful, at which point it's usually so self-evident that it is that no one would question doing it in the first place. No one ever thought it would be useful to send stuff into space until some people did very useful stuff doing just that. In fact there are still many people who think it's all useless, even though they probably make daily use of stuff derived from it.

 

Yes, it is frustrating, not least of which is poor signal-to-noise ratio in the results.

What matters is severity of symptoms that leads to inhibition of activity and substantial loss of quality of life - something which most of the studies were not planned effectively in the first place.

 

This. Just as an example, I've had SVT (supraventricular tachycardia) since age 11. It never interfered with work, school, exercise, or any activity.

Yet when I mention SVT in my medical history (heart rate of 185-200) some doctors have wanted to focus on this even though it is quite intermittent and is not disabling. I've had episodes in the grocery store and was able to finish my shopping, check out, and drive home while it was happening.

But my symptoms from ME/CFS and POTS, most of which are much harder to measure than heart rate, and which can be difficult to describe at times, are a LOT more disabling.

It's like the old joke of the drunk who lost a 20 dollar bill. He dropped it somewhere down the street but he's looking under a lamp post because the light is so much better.