Alleluia!! The most validating paper I have read in a LONG while. For those of us that are not better after a year or more. Or have actually felt their symptoms worsen whilst others are improving. We are NOT alone.
A French research team have published "Course of long COVID symptoms over time in the ComPaRe long COVID prospective e-cohort".
Brain foggers/fatigues summary:
PCR positive patients followed up as Long Covid progressed.
15 % had disappearance of symptoms but then 33% of these relapsed for at least one symptom
At 1 year the probability of symptom persistence was 84.9%.
51% of symptoms showed improvement over time. These included - loss of appetite, change/loss of taste, cough.
34% of symptoms showed no specific change in prevalence over time. Word finding problems and shortness of breath were the most prevalent at NOT improving. At 1 year they affected ALMOST HALF of the participants.
15% of symptoms showed an increase in prevalence over time. These included - neck, back, and low back pain and paraesthesia (numbness, tingling).
Long Covid is relapsing and remitting.
At 6 months nearly three quarters of participants felt they were in an unacceptable symptom state.
Why did they do it?
According to the United Kingdom Office for National Statistics, about 10% of those who have an acute infection will experience post COVID-19 disease or “long COVID”: the persistence of symptoms such as fatigue, dyspnoea, chest pain, cognitive disturbances, or arthralgia, for several weeks to months after their initial SARS-CoV-2 infection. Research has mainly focused on the occurrence of specific long-term complications among hospitalised and non-hospitalised patients recruited during their acute COVID-19 infection. To their knowledge, only a handful of studies have investigated the longitudinal evolution of symptoms among patients with persisting symptoms (Long Covid), but they have generally been small, either retrospective or limited to single centres or both.
What did they do?
In this study, they used data from a large nationwide cohort of patients in France to reconstruct the day-by-day course of their symptoms from onset to 1 year after the acute phase of the infection.
Participants were followed up every 60 days with online questionnaires available on computer or smartphone. At each observation point, patients were first asked if they still had symptoms related to COVID-19. Those reporting the persistence of symptoms completed the long COVID symptom tool and impact tool, a pair of validated patient-reported instruments assessing respectively 53 symptoms and 6 dimensions of patients’ lives that can be affected by the disease.
Those reporting that they no longer had any symptoms were asked to report the date when they first noticed the absence of symptoms
The proportion of patients lost to follow-up was <20% at every follow-up.
What did they find?
Of the 968 patients analysed:
The patients’ median age was 48 years (range 32 to 56)
57.7% were men.
35.1% reported comorbidities - 6.3% had chronic lung diseases, and 4.2% high blood pressure.
The median time between symptom onset and the last follow-up was 174 days.
Among participants, 7.7% had been hospitalised during their acute disease and 3.5% had been admitted to an intensive care unit.
Remission of symptoms:
Remission of symptoms (i.e., disappearance of all symptoms) was observed during follow-up for 150 patients (15%)
Among those who reported full symptom remission 33.3% subsequently described a relapse for at least one symptom.
At 12 months, the probability of symptom persistence (including patients in remission who relapsed) was 84.9%.
Figure. Day-by-day trends in the prevalence of post COVID-19 disease symptoms
51% of symptoms showed a progressive decrease in prevalence over time. These included - loss of appetite, change/loss of taste, and a cough changed most (>20% decrease).
34% of symptoms showed no specific change in prevalence over time. Word finding problems and dyspnoea were the most prevalent at NOT improving. At 360 days, they affected, respectively, 48% and 44.5% of the population.
15% of symptoms showed an increase in prevalence over time. These included - neck, back, and low back pain and paraesthesia (numbness, tingling) changed most markedly (>10% increase).
Relapsing and remitting nature: Post COVID-19 disease is a relapsing-remitting disease. Sixty days after symptom onset, most of patients reported permanent, daily or weekly symptoms. Over time, relapses became less frequent, with a decrease in the proportion of patients reporting weekly or more frequent symptoms (including those reporting permanent symptoms) and a parallel increase in the proportion reporting relapses less than weekly.
Impact of the disease:
The above figure illustrates patients’ perceptions of the impact of the disease on their lives. In particular, they found that the proportion of patients reporting an unacceptable disease state defined as a score of which patients consider that they could not cope with a similar level of lifelong symptoms.
This analysis revealed two distinct phases of the disease:
In a first phase, from 60 to 180 days, the burden of disease progressively decreased as several symptoms disappeared, while the number of patients reporting an unacceptable symptom state rose slowly to 50%.
After 6 months, the proportion of patients reporting an unacceptable disease state increased more rapidly, with 60-70% of patients considering their disease unacceptable at that time.
This secondary increase may correspond to patients’ realisation that they had a chronic disease. This finding highlights the disease's important impact on all patients.
What did they conclude?
This is the first study to report how the symptoms and impact of Long COVID evolve after the acute phase of the disease, in a large prospective cohort of patients with a laboratory-confirmed infection.
Among patients with Long COVID, 85% still reported symptoms one year after symptom onset.
This finding is consistent with observations in a single-centre study in Germany, where 20% of patients were free from all 14 symptoms under study at 12 months.
The course of symptoms over time highlighted three distinct patterns that offer insight into the aetiologies and mechanisms underlying this disease:
There was a decrease in prevalence over time for symptoms such as loss of taste or smell, coughing, or diarrhoea. For example, the prevalence of coughing decreased from 50% to 20% of participants within the first 6 months after symptom onset before reaching a plateau. This was similar for loss of smell, with a plateau reached after 8 months. This evolution, indicating recovery from the acute phase, is slower than expected; indeed, most guidelines still consider a cut-off of 12 weeks to distinguish ongoing symptomatic COVID-19 (i.e., signs and symptoms of COVID-19 from 4 to 12 weeks) from post-COVID-19 syndrome.
For other symptoms, we showed that their prevalence increased over time. For example, the prevalence of hair loss increased over time with 8% and 15% of participants reporting it at 2 months and one year after onset respectively. Late symptom appearance, especially alopecia, has been reported in other studies and should be further investigated.
Finally, symptoms showing no change of prevalence over time may be caused by mechanisms that do not change rapidly over time, such as deconditioning or post-traumatic stress disorder (??), or due to a mixture of recovery from acute disease and late-onset symptoms appearing as a consequence of COVID-19.