Thanks @apresj20 for drawing attention again to the rise of #LongCovid as a grassroots, patient-led scientific ~ advocacy movement in early ~ mid 2020. We changed how covid was understood. We're still fighting for better treatment, recognition and support of all patients 💙 🧵
The story of #LongCovid rise as a patient-made term ~ advocacy movement in early 2020 started with people across the world coming together to challenge early narratives of covid | short, mild, respiratory only esp. in the young
Patients were not recovering in the 2--6 weeks recovery timeline that was in the formal guidelines at the time. Many grassroots movements rose in different countries under hashtags like #apresJ20 in France, #covidpersistente in Spain or #longhaulers | by @Amy_Ant | in the US
The movement started to coalesce around the term #LongCovid in May 2020. Patient-led support groups grew, and formal ~ informal patient-led research teams started to produce the first papers in the world on prolonged covid symptoms
e.g. @patientled
A great thread by @dgurdasani1 on where we are in terms of pandemic development
I strongly concur vaccination is great, but doesn't necessarily prevent infection, symptomatic disease, severe acute disease, fatal disease, and #LongCovid. We have already the data to show that
Omicron and sub-lineages have significant immune escape features that may lower, among other things, the efficacy of our vaccines. Immune escape was evident soon after omicron emerged. This was published, for example, in top @Nature in December 2021
SARS-CoV-2 is still evolving at a fast pace. Actually, evolution seems to have accelerated as the virus spreads rapidly, largely uncontrolled, across the globe. The severity of future variants is unpredictable
Covid as a clotting disorder ||
Further evidence SARS-CoV-2 infection increases the risk of thrombotic events and other coagulation-related anomalies in both acute and #LongCovid || a large-scale study based on 2020 and 2021 cohorts
The authors report an increase in the risk of deep vein thrombosis, pulmonary embolism and bleeding with covid || risk of coagulation-related abnormalities persist for months after the first weeks of covid ~ as reported by the patient community > #LongCovid
As the authors themselves acknowledge, their data are based on analysis of medical records: it is well possible, thus, that thrombotic phenomena | coagulation problems are more common than reported in their research || spoiler from the #LongCovid patient community: yes! 👇
SARS-CoV-2 is *very* airborne. Many people don't understand it. Public health officials aren't open about the mode of transmission. Most people have problems in grasping the extent and reality of airborne transmission. Policy makers must be clear about this #COVIDisAirborne
Even people who understand the importance of masks, do not fully grasp the virus can stay in the air for a while even if the infected person has left. The cigarette smoke analogy is so good. People in position of power (policy, media, politics) should be open about this
Another issue is how fast the virus is at infecting you, even if you stay within with the virus-laden air for a relatively short period. So, we see people, for example, removing masks on flights to eat. Or, sadly, policy makers removing their masks to talk to journalists
A review of #LongCovid as a thrombotic phenomenon. With discussion of endothelial injury, clotting, tissue hypoxia, lung vascular damage, platelet activation etc. || The authors address the need for early anticoagulant | antiplatelet therapy
A little note about patient-led research and the need for appropriate recognition of patient-driven expertise: many issues in the paper have been raised by the #LongCovid community starting already 2 years ago
Thanks @LongDeutschland to let me know #LongCovid is now officially in the German Dictionary too, after other countries like the UK, US, and Italy
We've come a long way
A thought to all patients, advocates, patient-researchers, and allies who have been fighting for recognition 💙
A positive step forward from the @WhiteHouse and the Biden Administration on addressing #LongCovid. A formal statement is out on 5 April 2022.
I am grateful to the advocates and researchers, including the patient-researchers, who made this possible 💙 🧵
I hope this roadmap to study and treat #LongCovid will be highly productive. I hope research will help people suffering from Long Covid to get their lives back. I hope research will be focused on treatment and care, in addition to simply quantifying the disease
I hope any cure, or treatment, or new knowledge, gained from the work envisioned in the roadmap, will be deployed to help marginalised communities, in addition to those with access to high-quality healthcare.