Fund Long COVID Research

This site was put together by a patient with severe Long COVID.

What is Long COVID?

The CDC defines Long COVID as: signs, symptoms, and conditions that continue or develop after acute COVID-19 infection. Depending on the person or the condition it can last months or be potentially lifelong.  The majority of cases come from mild cases and most people do not recover (another source). There is a big overlap with ME/CFS and other infection associated complex chronic illnesses.  The quality of life is often lower than other serious illnesses.

While I picked everything here because I thought it was important, I have highlighted the links I think are the most vital to getting the picture of why we (and the US economy) need research,  what patients are experiencing, and what it means for this moment in time. 

And if you read nothing else read the Nature commentary, the letter to POTUS, and Ed Yong's Fatigue Can Shatter a Person.

Overview of Long COVID

"The cumulative global incidence of long COVID is around 400 million individuals, which is estimated to have an annual economic impact of approximately $1 trillion—equivalent to about 1% of the global economy " Long COVID science, research and policy (If paywalled here's a free link)

Long COVID: major findings, mechanisms and recommendations

Conditions one can develop after COVID: Cardiovascular, thrombotic and cerebrovascular disease, Type 2 Diabetes, ME/CFS, MCAS, POTS/dysautonomia, Autoimmune and inflammatory connective tissue disorders, Autoimmune diseases, immune dysfunction, cognitive slowing 

This is a tiny glimpse of the papers (and I am not qualified to have made a selection) coming out about Post Covid Conditions and Long Covid, here is one database on Long COVID research from Apresj20. With this much research showing consistent abnormalities we need treatment trials based on these findings immediately.

Focus on Post-Exertional Malaise (PEM):

Somewhere around 58% of people with Long COVID qualify for ME/CFS diagnosis, the hallmark of which is PEM (sometime referred to as Post Exertional Symptom Exacerbation (PESE) or Post Exertional Neuroimmune Exhaustion (PENE). This is a devasted and often life destroying symptom. The first Ed Yong article linked in the next section: Fatigue Can Shatter a Person does an excellent job of conveying what it's like living with this symptom.

There was recently an awesome article in nature that looked at some of the physiology of PEM. And here is the NPR report on it.

What having Long COVID is like

How can I help?

WorldWorld health networkContact your congress people to call for public funding:

 Visit Long COVID Moonshot for call guides or to sign up for their emails so you can know when they are running a campaign. You can also find your member and just let them know you care about Long COVID and want to see funding! Calling or emailing repeatedly over time really makes a big difference!

Donate to private research funding:

Donate to PolyBio Research Foundation 

Donate to Open Medicine Foundation 

Donate to Patient Led Research Collaborative 

Spread your knowledge:

Hopefully you've learned a bit about Long COVID and what impacts it has, tell other people! Public Health and the government are doing an awful job teaching the public what Long COVID is and how serious it is.

Take action to reduce your risk and protect those already sick:

Learn about the how COVID spreads and how you can protect yourself at: The John Snow Project  World Health Network

Have Long COVID and trying treatments?

Let the FDA know whats working and what's not with CURE-ID!

Want to stay up to date with News about Long COVID?

Check out The Sick Times a paper made specifically to share news on Long COVID and COVID.