Patient-led start-up Visible has launched two app-based health studies in collaboration with researchers at Imperial College London.
Since it launched in November 2022, over 30,000 people with Long COVID or myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) have been using the Visible app to find patterns in their illness, and adjust their lifestyles to avoid symptom flare-ups.
Visible is now expanding the app's use by working with researchers from Imperial's Faculty of Medicine to launch two new research studies hosted within the app. From today, users are able to enrol directly into these studies, contributing their anonymised data to help scientists better understand the impact of Long COVID and hopefully help pave the way to finding new treatments.
An estimated 65 million people around the globe are grappling with the challenges of Long COVID, a debilitating and poorly understood condition with no universally recognised diagnostic test or treatment.
The menstrual cycle and Long COVID
Dr Viki Male, an immunologist in the Department of Metabolism, Digestion and Reproduction, is leading a study into the relationship between the menstrual cycle and Long COVID symptoms.
Long Covid appears to disproportionately affect women, with estimates suggesting that 70 to 80% of patients are female. This trend is reflected in Visible's data, where over 75% of their 30,000 users identify as women, emphasising the importance of understanding this connection.
Speaking about the benefits of a patient-led app, Dr male said: "Visible provides a unique opportunity for patients already tracking their illness to share their data effortlessly with researchers. With many patients reporting exacerbated symptoms at different times of their cycles, it's critical we delve into this area to steer future biomedical research."
In particular, the findings may shed more light on whether existing therapies, such as hormonal contraception, might alleviate symptoms.
Economic Impact of Long Covid
Christian Morgenstern, an Infectious Disease & Health Economics Researcher at the School of Public Health and MRC Centre for Global Infectious Disease Analysis, leads the second study, investigating the disease's epidemiological properties and economic impact.
Morgenstern notes: "In the US, it is estimated that up to 4 million people are out of work due to Long Covid. Meanwhile, in the UK approximately 2 million people have reported Long Covid symptoms, likely contributing to the record levels of people unable to work due to long-term sickness. We need more data to better understand these conditions' impact on the health of individuals and the labour market to shape health policy globally."
A new era of patient-powered research
The co-founder and CEO of Visible, Harry Leeming, who has been living with Long COVID for over 2 years, says “Long COVID continues to be overlooked and underfunded. Despite the latest data on its prevalence and its massive impact on quality of life, governments continue to move too slowly on this growing health crisis.”
The need for urgency is backed up by a recent study that found that Long Covid patients' fatigue levels and quality of life can be worse than those with serious kidney disease, advanced cancers, and Parkinson's. With half of the Visible team impacted by Long COVID, Leeming adds: “We’re using our lived experience to bring research to the masses and help move the science forward for millions still suffering.”
Visible is inviting more researchers and institutions to come forward to use its data, and given the overlapping symptoms of Long COVID and ME/CFS, the company is including ME/CFS in its research initiatives.
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