By Eric Pyrrhus
César Medina climbed mountains, lifted weights, and was an avid cyclist. He had a good job. He had a partner.
But everything changed in November 2020, thanks to an infection with the novel coronavirus.
Today he lives confined to his bed, abandoned by his partner, unemployed, and wearing special compression stockings so as not to lose blood flow to the brain.
Cesar suffers from Long COVID — a devastating disease caused by the coronavirus. This disease destroys the lives of sufferers, leaving them unable to breathe fully, walk normally, stand, think clearly or even hold a conversation.
In the United States, the government has earmarked 1.2 billion dollars for research into this disease, which affects an estimated 24.7 million Americans. In Mexico, César Medina has only encountered denial and stigma.
Millions of Mexicans suffer from this disease, many of them without even knowing it. César Medina decided to do something about it, and formed a group of patients called COVID Persistente México Comunidad Solidaria.
We spoke with him to learn more.
How did you first realize that you had Long COVID?
After “recovering” from my first infection in November 2020 — two weeks later — the symptoms came on all at once: fever, nausea, diarrhea, chills, mental fog, spasms, tremors, etc.
That’s when I knew something was wrong. In Mexico since then, there has been NO recognition of the existence of Long COVID, so no one really knew what was wrong. The doctors said it was anxiety and it was psychosomatic.
So, digging in social networks, I found the European Long COVID groups and I came to understand that I was not the only one suffering from this, and that it had a name.
What motivated you to form the patient group COVID Persistente México Comunidad Solidaria?
It was the rejection by doctors, the gaslighting, the invalidation, the fact that in my country there was absolutely no recognition of Long COVID.
I lost friends, a partner, work — not only because of the disabling symptoms, but because of the stigma of the disease.
The group is a supportive and empathetic space of companionship.
What have you learned from others in the group and what broader realities have you learned from your experience with the group?
I learned that Long COVID is a heterogeneous disease, there are subgroups. I think I am in the worst one, and because of my multiple reinfections everything has worsened drastically.
But despite that, it’s the only space of companionship I have. So I have learned to be patient, empathetic and sensitive to the reality and suffering of others.
The reality is that in Mexico the public health system is extremely precarious. The care is terrible and Long COVID isn’t in their clinical guidelines, so there is no medical approach.
The vast majority of people do not have the economic resources to seek private care — which is not very helpful either, since doctors are not aware of the reality of Long COVID so there is not much help.
How would you respond to someone who says, “I think I may have had a coronavirus infection, but I’m not sure. I’ve been experiencing some strange symptoms and my doctor doesn’t know what to make of it. How can I find out if I have Long COVID?”
SARS-CoV-2 is the virus that has infected perhaps the most people on the planet. So, chances are you’ve had a COVID-19 infection, and chances are you’re likely to be experiencing Long COVID. Welcome to this unfortunate club.
What are the things that Mexican doctors and politicians need to understand about Long COVID?
EVERYONE — absolutely EVERYONE — they know nothing, they minimize the disease, they only think of COVID-19 in the acute form and believe it is a simple cold with no long-term consequences.
I believed it myself. They’ve been communicating it from the beginning — “milder than a flu.”
It’s just criminal. They’ve let people catch it by relying on herd immunity — which doesn’t exist in this disease. And because of that, millions have died and millions more of us are disabled by the long-term consequences.
Doctors simply invalidate the reality of chronic diseases because they don’t learn about them in school. They know how to treat an acute illness, but when it becomes more protracted, they have no choice but to say “it’s all in your head.” There is no interest in really helping the patient, trying things or following up.
In other countries, the press talks about Long COVID and there are at least a handful of allied scientists and doctors. But here in Mexico we are alone as Long COVID patients, and I do not doubt that this is the case for other chronic post-viral diseases.
What are the things that the international community needs to understand about any issue specific to Mexico or Latin America?
The reality and context of our region. Think beyond the privileges of the first world. Our reality is more violent, more hostile, worse and this is in every sense.
Many activists and advocates of Long COVID have a lot of popularity in networks, but believe that everything is the same for everyone — and if they are struggling there, here we are in hell itself.
That cognitive bias must be broken and we must think just like an international common front — one that promotes democratic access to health, protection of the most vulnerable and adequate care for patients.
Thank you very much for taking the time to talk to us.
Long COVID is very similar to another post-viral disease, called myalgic encephalomyelitis. To learn more about the reality of myalgic encephalomyelitis in Mexico, you can read this article:
Eric Pyrrhus is a scientist with an interest in flaviviruses, picornaviruses, and imaging technology. With undergraduate training at Columbia University and the University of Pennsylvania, and graduate training at U.C. Berkeley and UCSF Medical School, he has studied biomedical sciences, bioinformatics, biomedical imaging, biosensors, computer science, artificial intelligence, and business administration.