The Preprint You've Been Waiting For...
Patient-Led Research update: the latest preprint is here!
Patient-Led Research, a self-organized group of Long COVID patients working on patient-led research around the Long COVID experience, have released a new preprint titled:
“Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact.”
This is the first study on COVID that looks at Long COVID patients beyond 6 months of illness, tracking the prevalence of 205 symptoms in 10 organ systems. Focusing on patients who have been sick for more than 6 months is crucial, as this first wave of Long COVID patients (those who got sick in March, April, and May) lacked many of the resources available to COVID patients today. For this group of patients, PCR tests were largely unavailable, hospital systems were often overwhelmed, and policy-makers were still encouraging patients to remain at home for as long as possible before seeking care. As Long COVID research progresses, it is crucial that this first group of Long COVID patients continues to be studied, as their experiences can help us understand the longer-term impact of COVID-19.
While this preprint focuses on people who experienced COVID symptoms for over 28 days and became ill before June 2020, this report is just the first of many analyses Patient-Led Research will be sharing on the 8000+ respondents in their survey. Download the full PDF here, and scroll down to read high level findings.
What is a preprint and how should we interpret the findings?
A preprint is a full draft research paper that is shared publicly before it has been peer reviewed. This means that the researchers will be making revisions, and that some figures are not finalized. By sharing work early, researchers can accelerate the speed at which science moves forward. There are a few caveats that Patient-Led Research would like readers to keep in mind, when reading their report:
The data presented in this preprint focuses on symptom profile and duration of those experiencing Long COVID. It doesn’t speak to the prevalence of Long COVID among different demographic groups. We hope this study can offer initial insights that help inform future clinical studies that address symptom profiles and return to baseline across broader populations.
The survey was open to anyone with COVID symptoms, including those who did not receive a positive PCR test. This more inclusive criteria was essential for understanding the experiences of those who got sick in March, April, and May, when tests were largely unavailable and many patients were told to stay home instead of seeking care. The preprint has a dedicated section on symptoms and test results.
You can read and cite this preprint, using this link.
In order to maintain scientific integrity, members of the Patient-Led Research will not be doing interviews about the preprint until the work has undergone peer review. If you are a journalist, please review these guidelines on media coverage of preprints, and reach out to team@patientresearchcovid19.com with any further questions. Patient-Led Research can also add you to a separate mailing list for press.
The Data:
The most frequent symptoms reported after six months were fatigue (77.7%), post-exertional malaise (72.2%), and cognitive dysfunction (55.4%).
Out of 205 symptoms tracked over time, 203 symptoms were consistent between positively and negatively tested groups. Only the prevalence of having a loss in smell or taste was significantly different. This is consistent with what we’ve found in our first study, and Mt. Sinai’s findings.
In those who recovered in less than 90 days, the average number of symptoms peaked at week 2 with 11.4 symptoms. In those who did not recover in 90 days, the average number of symptoms peaked at month 2 with 16.5 symptoms.
85.9% experienced relapses, with exercise, physical or mental activity, and stress as the main triggers.
86.7% of unrecovered respondents were experiencing fatigue at the time of survey, compared to 44.7% of recovered respondents
45.2% reported requiring a reduced work schedule compared to pre-illness and 22.3% were not working at the time of survey due to their health conditions
For more key findings, check out the below Twitter threads from researchers Athena Akrami and Hannah Davis, and please feel free to reach out to Patient-Led Research with questions! As a patient-led initiative, we are happy to receive questions, especially if something is confusing. Similarly, the Patient-Led Research team encourages interested patients and researchers hoping to collaborate to reach out! We know firsthand that patients are important experts in the fight to treat and eradicate COVID-19, and we are eager to help amplify your ideas and perspectives.
A huge thank you to all of the patients and participants who took this survey (we know it took time and effort!), the allies in science and medicine who helped in reviewing this work, and everyone at Patient-Led Research and Body Politic who helped to publish this preprint! We are so grateful for your work; there’s no better way to ring in a new year, than by celebrating patient-led efforts 🧡
In case you missed it...
Body Politic is in the news!
“Where Year Two of The Pandemic Will Take Us,” Ed Yong, The Atlantic
“Once neglected, long-haulers have forced the world to recognize their existence. In May, many scientists I spoke with had never heard of the phenomenon; this month, the National Institutes of Health held a two-day conference to discuss it. “I don’t think we can ever be forgotten,” Chimére Smith, a middle-school teacher in Baltimore, told me. “The health-care industry can never again say they don’t know what a long-hauler is.”
Art by Adobe Stock
“For Coronavirus Survivors, COVID-19 Support Groups Fill a Need,” Sara Radin, SELF
“In my personal experience, the Body Politic group has become one part of my larger support system, giving me a feeling of assurance my therapist and friends might not be able to provide. For individuals who cannot access mental health care due to affordability and other barriers, the support group may provide a sense of belonging and potentially connects people to information they can use to feel better physically or mentally.”
***
Thanks for reading the Body Politic COVID-19 Support Group newsletter. Open to all, this newsletter seeks to provide COVID patient allies, healthcare professionals, journalists, and other interested parties with information on our COVID-19 Support Group. Because the group is currently only open to COVID patients, survivors, and their caregivers — a decision our team made to foster a culture of trust within the online community — many of the amazing insights the group provides have not been shared with the outside world. In this newsletter, we will give you a look inside this robust support group, by summarizing big discussion themes, sharing advocacy updates and links to articles our group found helpful, and including personal anecdotes from group members. Click here to get the newsletter sent directly to your inbox!
For more info on the group, email info@wearebodypolitic.com
For media inquiries, email PR@wearebodypolitic.com
