Welcome to the World’s sustainable, global community hub for post covid syndrome. This is an online platform and info portal for post covid syndrome patients, researchers, institutes, organisations and charities where we synthesise our knowledge and understanding of the post viral disease. We specifically refer here to ‘Chronic’ Long Covid, that is post covid syndrome beyond 12 weeks.
This community portal has been designed to be a central point for patients, practitioners, organisations and researchers irrespective of location. We beleive by sharing we enable the best to be shared under one roof.
We the patients need to stand united in the face of this global pandemic and the very physiological and debilitating illness we have been left with but it is imperative that we work alongside practitioners, institutes, organisations and researchers. This hub has also been set up to support patients irrespective of geographical location. We provide language support for non speakers of english and support for individual countries, the idea being that no one should be disadvantaged because of geographical remoteness or poverty.
Here you will find everything there is to know to keep ahead of pioneering research in the field: ongoing global research projects & results as they are published, a range of global science articles & publications, findings and ideas for research, links to our partners we are working with, including those who support secondary illnesses we are seeing develop, opportunities to access and share information in different countries and in different languages, patient stories, signposting for support, secondary illnesses and our ‘catalogue of effects’ as reported by our members, our survey, one of the first surveys to be undertaken of ongoing covid patients from May 2020 which remains open.
We also share what we know and have found out from our patients as we have been documented the illness from the outset, including our own timeline of the disease and what we think long covid is showing as.
We are always looking for any new information, from around the world so please do not hesitate to contact us if there is anything you would like to add. You can also advertise for patients for research here too.
This is an online support portal run by the admin team of the Chronic Long Covid19 facebook group who have around 4000 patients across the globe. We have set it up to support patients, organise articles, share research projects, NICE Guidelines, NIHR info, the location of NHS Clinics, DWP and DFHSC, the CDC and FDA. Information as well as secondary illnesses some patients have gone on to develop. In time we hope to build it up to allow more interactive format.
We have forged partnerships with and are working alongside our partners around the globe: Mount Sinai hospital, New York, USA, Cambridge Brain Science Institute, Ontario, Canada, UCL, London, UK, The British Lung Foundation, The European Lung Foundation, ME association, ME Research UK, Sepsis, UK, Patient Safety Learning, UK, National Health Service England, National Institute for Health & Research (NIHR), UK, The UK Government, The and many more