Fund Long COVID Research
This site was put together by a patient with severe Long COVID in very short spurts over months, please excuse the lack of polish and any grammar errors. It is also slowly being improved and fleshed out.
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.
Why do we need more funding?
Where are we now with funding?
Could Long Covid Be the Senate’s Bipartisan Cause?
The NIH has poured $1 billion into long Covid research — with little to show for it
Long Covid research funding at NIH gets a nearly 50% boost
We need more funding but it's important to do better than the NIH has been doing so far!
7 Facts about Long Covid and the Labor Force
Long covid may account for up to 15% of the labor shortage and costs up to $230 billion a year in lost wages alone.
Victims are disproportionately likely to be in the service industry, and thus drive inflation.
About 1 in 9 individuals infected with COVID have some form of lingering symptoms in a Dutch study.
In one study 85% still had symptoms at one year and the disease impact began worsening at 6 mo. In another study 92.4% didn't recover by 2 years.
5.3% or around 18 million Americans were experiencing Long COVID in Oct 2023
People are not getting better on their own and with the current spread of COVID this problem is only getting bigger.
Overview of Long COVID
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
Articles by Ed Yong:
Fatigue Can Shatter a Person (If paywalled here's a free link)
Reporting on Long Covid Taught Me to Be a Better Journalist (If paywalled here's a free link)
Long COVID Is Being Erased—Again (If paywalled here's a free link)
One of Long COVID’s Worst Symptoms Is Also Its Most Misunderstood (If paywalled here's a free link)
More incredible articles:
1,374 DAYS - MY LIFE WITH LONG COVID (If paywalled here's a free link but you loose the art piece of it)
Long COVID will take your health, your wealth — then it will come for your marriage
Some short videos telling a patient story:
Article about ME/CFS current landscape and where Long COVID fits
Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases (if paywalled here's a free link)
How can I help?
Contact 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
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.
There is good work being done but it is not nearly to the scale and urgency indicated by this crises. We need to build on this knowledge and scale up in speed and in quantity the research being done about Long COVID and other infection associated complex chronic illnesses to avoid massive amounts of human suffering and economic disaster.