The Survivor Corps is one of the largest and fastest growing grassroots movements connecting, supporting, educating, motivating and mobilizing COVID-19 Survivors. It is based in the USA and has 150,000 members.
They connect, support, educate and motivate those affected by COVID-19 and their colleagues, families and friends. They support all ongoing Scientific, Medical and Academic research in order to improve the understanding of the Long Covid and health care options for those suffering with acute and long term symptoms. They have recently published a pre-print research paper titled:
"COVID-19 Survivors’ Reports of the Timing, Duration, and Health Impacts of Post-Acute Sequelae of SARS-CoV-2 (PASC) Infection"
In the States they are now using Post-Acute Sequelae of SARS-CoV-2 Infection or PASC as the term for Long Covid. Here is the abstract:
PASC is a major public health concern. Studies suggest that 1 in 3 infected with SARS-CoV-2 may develop PASC, including those without initial symptoms or with mild COVID-19 disease.
OBJECTIVE To evaluate the timing, duration, and health impacts of PASC reported by a large group of primarily non-hospitalized COVID-19 survivors.
DESIGN, SETTING, AND PARTICIPANTS A survey of 5,163 COVID-19 survivors reporting symptoms for more than 21 days following SARS-CoV-2 infection. Participants were recruited from Survivor Corps and other online COVID-19 survivor support groups.
MAIN OUTCOMES AND MEASURES Participants reported demographic information, as well as the timing, duration, health impacts, and other attributes of PASC. The temporal distribution of symptoms, including average time of onset and duration of symptoms were determined, as well as the perceived distress and impact on ability to work.
RESULTS On average, participants reported 21.4 symptoms and the number of symptoms ranged from 1 to 93.
The most common symptoms were:
shortness of breath (55%)
difficulty concentrating (54%)
changed sense of taste (45%)
muscle or body aches (44%).
The timing of symptom onset varied and was best described as happening in waves.
The longest lasting symptoms on average for all participants (in days) were:
“frequently changing” symptoms (112.0)
inability to exercise (106.5)
difficulty concentrating (101.1)
memory problems (100.8)
hormone imbalance (99.1)
shortness of breath (96.9).
The symptoms that affected ability to work included:
- the relapsing/remitting nature of illness
- inability to concentrate
- memory problems
Symptoms causing the greatest level of distress (on scale of 1 “none” to 5 “a great deal”) were:
- extreme pressure at the base of the head (4.4)
- syncope (4.3)
- sharp or sudden chest pain (4.2)
- brain pressure (4.2)
- headache (4.2)
- persistent chest pain or pressure (4.1)
- bone pain in extremities (4.1).
CONCLUSIONS AND RELEVANCE PASC is an emerging public health priority characterized by a wide range of changing symptoms, which hinder survivors’ ability to work. PASC has not been fully characterized and the trajectory of symptoms and long-term outcomes are unknown. There is no treatment for PASC, and survivors report distress in addition to a host of ongoing symptoms. Capturing patient reports of symptoms through open-ended inquiry is a critical first step in accurately and comprehensively characterizing PASC to ensure that medical treatments and management strategies best meet the needs of individual patients and help mitigate health impacts of this new disease.