Trial By Error: Some Things I’ve Read Recently…

By David Tuller, DrPH

With so many people impacted by Long Covid and ME/CFS, it is impossible to keep up with all the non-academic articles, posts, and commentaries out there. The gusher of material is really overwhelming. Given that, sometimes it seems worthwhile to highlight a few things worth reading. (Note: Recommending something as worth reading should not be taken as an endorsement of every single statement, fact or argument presented.)

**********

A dad struggles to cope with his son’s severe Long Covid

This LinkedIn essay, posted last Tuesday by a dad struggling to cope with his teenage son’s severe Long Covid, is heartbreaking. In the post, headlined “Growing Up Sick,” Royal Hansen, a Google vice president in the San Francisco area, describes a situation many parents are all too familiar with. That includes having to parry suggestions, even from sympathetic sources, that his son is suffering from mental illness—that is, something “in his head.” The post starts with a (slightly adapted) saying from Confucius: “A healthy [child] wants a thousand things, a sick [child] only wants one.”

I have included a few excerpts:

“Many of you know that my son is still battling complications from Long COVID. We are well into the 5th year of his decline which began when he was 10 years old. I use the word decline deliberately as even today, in spite of every pill and blood test, the nerve pain and the afternoons lost to dense fatigue continue to generate new forms of suffering. And while the physical dysfunction is more than enough to crush him, navigating the social and emotional loneliness in these early teenage years has become its own affliction.

“I was slow to understand and believe that he was not going to suddenly recover, and even slower to realize that he would steadily get worse. As this became worryingly clear, I began to speak more openly with friends and colleagues about his current state and treatments – we had already shared with our friends and families in words and videos as much of his reality as we could (for another day, I’ll try to describe how difficult it is to convince even sympathetic individuals that this is not all “in his head”).  Momentum for a change in my approach to his illness grew steadily with each “crash” that he endured…

“Navigating the teenage years is hard enough, but to do so with an extremely limited number and variety of contacts has become unimaginable to the point of being a categorically different adolescence. He lives most hours of the day in a dark, cold room interrupted only by the refill of his over-salted water bottle and a thrice daily battery of pills. The skills and self understanding which most of us uncomfortably forge in adolescence don’t develop without the healthy gauntlet of school, sports, neighbors.”

You can read the full essay here.

**********

Letter to Chicago Tribune from ME carer about Trump administration’s “gutting of federal health agencies”

The Chicago Tribune published several letters under the headline “Gutting of federal health agencies has consequences for patienets with chronic illnesses.” (I’m not sure if these letters are in response to a particular article or several articles.) The photo illustrating the Tribune‘s letters page is a particularly unpleasant image of RFK, Jr’s contorted facial expression while appearing before Congress to testify and lie during his confirmation hearings. As the newly installed U.S. Secretary for Health and Human Servcies, he is already acting to destroy public health functions right and left.

Among the letters was an impassioned appeal from Rebecca Groble, the full-time carer for her bedridden 26-year-old son, who developed ME after suffering from mononucleosis (or glandular fever) in 2018. I’m posting the full letter below, since it might be behind a paywall for some:

“Gut-punched doesn’t begin to describe my feeling about the Trump administration’s gutting of federal health care agencies.

“You see, I am the full-time caretaker of my 26-year-old son, Gabe, who has spent more than one-fifth of his life bed-bound with myalgic encephalomyelitis, or ME, an infection-associated chronic condition and illness, or IACCI.

“A bout of mononucleosis in the summer of 2018 has turned Gabe’s life and my family’s life into a nonstop nightmare. Imagine living within the confines of four walls mostly in silence because of brain fog and sound sensitivity. Imagine never stepping out of your bedroom and being totally dependent on your parents for everything. My son had a full life as a university student, volunteer, employee, friend and bandmate before mono hit. In fact, he still tests positive for the Epstein–Barr virus.

“But this is what IACCIs do. They don’t kill but steal dreams, potential and full lives. They steal one’s ability to care for one’s self and to be a productive member of society.

“According to World ME Alliance, 17 million to 30 million people across the world are estimated to have ME. Many go undiagnosed because there is only a handful of true experts. There is no treatment approved by the Food and Drug Administration or cure for ME. For most ME patients, it is a lifelong condition, with a 5% recovery rate, according to the World ME Alliance. Another sobering fact is the economic impact: up to $362 billion in the U.S.

“ME and other IACCIs have been grossly underfunded and under researched for decades by all administrations, but now the health agencies have been depleted by President Donald Trump, what hope is left? How can these patients and millions of other Americans with all variety of illnesses ever dream of a cure or treatment that can give them back their lives?

“The Trump administration’s actions are cruel and unnecessary. They must be stopped.”

**********

Another death way before its time…

One of Germany’s most high-profile advocates for patients with ME/CFS, Faraz Fallahi, died at the age of 42 on February 24^th, at the age of 42. He was well-known for his social media posts and had been profiled in major news outlets. A touching obituary written by a friend was posted on the website of the news organization Die Mittelländische Zeitung. These cases are all so awful. Below is just a snippet, as rendered from the German by Google Translate.

“So the circle closes in a bitter way and at the end of January 2025 Faraz is back where he was in autumn 2022 – but this time there is unfortunately no second chance for treatment for him. So Faraz’s only option is to give up and say goodbye – a final, difficult path surrounded by his loved ones, which he walked admirably bravely and composedly until the end of his life on February 24th.”

You can read the full obituary here.

**********

Disclosure: I am a senior fellow in public health and journalism at the Center for Global Public Health, which is part of the School of Public Health at the University of California, Berkeley. My academic position is largely supported by donations to the university via the campus crowdfunding platform from people with ME/CFS, Long Covid, and related disorders.