Long Covid Land Toolbox
THE UNRAVELLING - A SCIENTIST . AN ARTIST . A FATHER
Self-funded short documentary about the true nature of Covid / Sars-CoV-2, and the impact that Long Covid has had on one family.
Derived from material photographed in Sept. 2024 for the feature length documentary project THE UNRAVELLING, currently in pre-production / development.
Presented as a public service and copyright free. Please download / copy / share / post as you see fit.
Featuring interviews with:
Dr. Ziyad Al-Aly – Dir. Clinical Epidemiology, University of Washington, St. Louis, USA
Rosie Pidgeon – Student / Artist – Belfast, N. Ireland, UK
Colin Pidgeon – Father – Belfast, N. Ireland, UK
Original Music
ANDREW HEATH
www.andrewheath.co.uk
www.andrewheath.bandcamp.com
Director / Camera / Editor
GRANT WAKEFIELD
www.grantwakefield.com
Advocacy & Resources available from:
www.longcovidkids.org
Interview with Dr. Amy Proal
@D_Bone hosted this space with Dr. Amy Proal, a microbiologist at PolyBio Research Foundation. She serves as PolyBio’s President, Research Director and on the Board of Directors.
Let’s welcome @microbeminded2 and @polybioRF to a Q&A session to discuss the current landscape of #LongCovid research.
Recorded Nov. 10, 2023
Educational and awareness-based resources to support long COVID care and rehabilitation across the continuum of care.
The St. John’s Rehab research program conducts collaborative, person-centered research that focuses on optimizing long-term outcomes and incorporating real world, lived experiences across the continuum of care.
Our Long COVID research team strives to explore the psychosocial impact that long-lasting COVID symptoms have on individuals and their families. With this Hub, we aim to create patient-focused educational resources and raise awareness on the realities of living with long COVID.
Introduction
In early 2023, the Office of the Chief Science Advisor published a report titled “Post-COVID-19 Condition in
Canada: What we know, what we don’t know, and a framework for action”.
The PCC Report took into account the existing scientific literature and published evidence through to October 2022, as well as the perspectives
of people with lived experience and input from several expert roundtables held in 2022. During the following months, research into the frequency, manifestations, causes, and treatment of PCC intensified.
On February 27, 2024, a meeting of the Chief Science Advisor’s Task Force on Post-COVID-19 Condition2 was convened to take stock of the latest science and policy actions related to PCC and formulate priority recommendations based on the current state of science. The scientific updates and deliberations from this meeting, as well as recent literature up to June 2024, inform this report “Dealing with the Fallout: Post-COVID-19 Condition and Its Continued Impact on Individuals and Society”. In addition to providing recommendations, this report sets important goals to continue to raise awareness of PCC, to help prevent its development and to minimize its health and societal impact.
Justin’s Long Covid Story
One Long Covid sufferer describes his experience of this severely debilitating condition without a cure, and the grief of how it has altered his life.
We’re working to help people like Justin, to protect your health, and to make living in a world with Covid safer.
Why the Patient-Made Term 'Long Covid' is needed
Elisa Perego, Felicity Callard, Laurie Stras, Barbara Melville-Johannesson, Rachel Pope, Nisreen A. Alwan
The patient-made term ‘Long Covid’ is, we argue, a helpful and capacious term that is needed to address key medical, epidemiological and socio-political challenges posed by diverse symptoms persisting beyond four weeks after symptom onset suggestive of coronavirus disease 2019 (COVID-19). An international movement of patients (which includes all six authors) brought the persistence and heterogeneity of long-term symptoms to widespread visibility. The same grassroots movement introduced the term ‘Long Covid’ (and the cognate term ‘long-haulers’) to intervene in relation to widespread assumptions about disease severity and duration. Persistent symptoms following severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection are now one of the most pressing clinical and public health phenomena to address: their cause(s) is/are unknown, their effects can be debilitating, and the percentage of patients affected is unclear, though likely significant. The term ‘Long Covid’ is now used in scientific literature, the media, and in interactions with the WHO. Uncertainty regarding its value and meaning, however, remains. In this Open Letter, we explain the advantages of the term ‘Long Covid’ and bring clarity to some pressing issues of use and definition. We also point to the importance of centring patient experience and expertise in relation to ‘Long Covid’ research, as well as the provision of care and rehabilitation.
Post-COVID-19 condition (also known as long COVID) is generally defined as symptoms persisting for 3 months or more after acute COVID-19. Long COVID can affect multiple organ systems and lead to severe and protracted impairment of function as a result of organ damage. The burden of this disease, both on the individual and on health systems and national economies, is high. In this interdisciplinary Review, with a coauthor with lived experience of severe long COVID, we sought to bring together multiple streams of literature on the epidemiology, pathophysiology (including the hypothesised mechanisms of organ damage), lived experience and clinical manifestations, and clinical investigation and management of long COVID.
Although current approaches to long COVID care are largely symptomatic and supportive, recent advances in clinical phenotyping, deep molecular profiling, and biomarker identification might herald a more mechanism-informed and personally tailored approach to clinical care. We also cover the organisation of services for long COVID, approaches to preventing long COVID, and suggestions for future research.
Three-year outcomes of post-acute sequelae of COVID-19
Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection leads to long-term health effects in nearly every organ system, collectively referred to by the patient-coined term Long Covid1,2,3,4,5,6,7,8,9,10,11,12,13,14. Studies following infected individuals for 1 year and 2 years described risk trajectories for many conditions1,3,4,5,6,7,8,9,10,11,12,13,15,16,17,18,19. Risks for some conditions abate after the first year after infection, but risks for many conditions persist at 2 years after initial infection, especially among individuals who were hospitalized for coronavirus disease 2019 (COVID-19) during the acute phase of illness20. About 25% of the burden of the 2-year cumulative burden of disability and disease due to SARS-CoV-2 emanates from the second year after initial infection20. However, studies with longer follow-up times are limited21. It is unclear whether and to what extent risks remain in the third year after infection and whether new latent risks (that have not yet been observed) become apparent in the third year after infection.
Accordingly, we undertook a comprehensive assessment of the risks and burdens of post-acute sequelae of COVID-19 (PASC) across care settings of the acute infection—both non-hospitalized and hospitalized individuals—in the 3 years after infection. Addressing this knowledge gap is important to deepen understanding of the post-acute and long-term health trajectories of people who had SARS-CoV-2 infection and will inform care of people with these conditions.