How volunteering to become a lab rat paid off

When I signed up for a clinical trial, I expected it to be thought provoking at best and onerous at worst. I didn’t expect it to change my life.

I was a healthy 30-year-old when I was hit with Long COVID in December 2021. I lost about 60% of my physical and cognitive stamina overnight – and could not work full-time. 

I tried several therapies, but nothing put the slightest dent in the debilitating fatigue. I was also caring for a partner with severe Long COVID – an experience that brought to mind the story of Orpheus and Eurydice, lovers from Greek mythology who ventured into the underworld together. I was told by multiple physicians that there were no drugs I could try.

Then, in February 2023, I got a tip from a friend about “some really cool-sounding” clinical trials at the National Centre for Neuroimmunology and Emerging Diseases (NCNED) at Griffith University in Queensland, Australia. 

I put my name down and waited. A full year passed before I learned that I was eligible for the low-dose naltrexone (LDN) clinical trial. I spoke with a physician affiliated with the trial by phone and completed a 30-minute baseline questionnaire.

Becoming a clinical trial participant was a way of weaving my personal narrative into the science on Long COVID. The experience renewed my faith in medicine and motivated me to demand more from my doctors. My health has come leaps and bounds as a result. 

Another perk of being in a clinical trial was having a convincing story to tell. I could see the cogs slowly turning in people’s minds: Clinical trial = serious, real. Drug might treat disease = disease isn’t psychosomatic. Finally, something was cutting through.

Another perk of being in a clinical trial was having a convincing story to tell.

Fortunately, the clinical trial was decentralized, and I didn’t have to travel anywhere to participate. This was crucial to my involvement because, at that time, even short outings were putting a big hole in my energy budget.

It was a coin toss as to whether I’d get the drug or a placebo. But by tolerating this temporary uncertainty alongside about 50 other participants, researchers could generate evidence for LDN’s effects in people with Long COVID.

Months went by with no further communications from the clinical trial team. I contemplated dropping out and accessing the drug elsewhere, but decided to wait for the trial to start. 

After all, what was the chance that LDN was a miracle cure for Long COVID? Almost nil, I figured. If it were, most doctors would already be prescribing it, surely? 

On August 15, 2024 – with no specific warning from the clinical trial team – a large temperature-controlled box landed on my doormat. It included 12 weeks’ worth of pills in two dosages.

The next day, I received an email explaining how to participate in the trial. It was taxing trying to process this infodump. I knew I would likely not retain all the details and could easily make a mistake. 

Naltrexone is an approved treatment for opioid- and alcohol-use disorders. At high doses (50–100 milligrams daily), it reduces cravings by blocking opioid receptors. Since the mid-1980s, LDN has also been used off-label to treat chronic pain, fatigue, neurological symptoms, and inflammation. Some people with Myalgic Encephalomyelitis and Long COVID have reported that LDN has helped improve their quality of life.

An information sheet from the researchers states that there have been no reports of serious adverse events relating to LDN but that side effects include mild insomnia, nausea, nightmares, headaches, and diarrhea. Okay, fun times, I thought. Let’s go. 

I sat down at the dining room table, swallowed the first 1.5-milligram pill, and waited for something to happen. At first, nothing. Then, about two hours later, I started to feel woozy. A headache, nausea, muscle aches, breathlessness, sore eyes, and sore gums followed. I needed to lie down for several hours. 

I had no idea whether I was taking the drug or a placebo, so I struggled to construct a coherent narrative about what was happening to me. I wondered: Is this real? Am I just imagining these side effects?

On day two, I took the pill after lunch and then felt sick until late that night. But sure, let’s go around again.

On day three, I took acetaminophen and braced myself for side effects. I felt awful all afternoon. My skin crawled. I felt like curling up into a ball. The back of my eyes hurt. My jaw twinged. Working seemed laughably beyond me.

I wanted to push through the side effects because even a tiny increase in my energy levels would be life-changing. But on the fourth day, I decided not to take the pill because it was interfering with my ability to work.

I was hesitant to contact the researchers because they had told me to report side effects in the weekly questionnaire, and who wants to deal with a high-maintenance lab rat? When I did eventually email them, the researchers immediately told me not to take any more pills until I’d spoken with one of their physicians. 

To calm my nerves, I also contacted a primary care physician who had been willing to prescribe LDN. She advised me to consider dropping out of the clinical trial as I couldn’t tolerate such a high dose of LDN/placebo. The rule of thumb with LDN was “start low and go slow,” she said. 

A few days later, I got a call from the clinical trial physician. He told me to lower the dose to 0.5 milligrams per day by pouring the pill into a glass of water and drinking one-third. I could also take the pill at night so I could sleep through the worst of it. 

By the end of August, the side effects had disappeared. I distinctly recall sitting in a park and being struck by an unfamiliar feeling of wellness. It was as if I’d had jet lag since December 2021, and it had evaporated – just like that. It immediately became unimaginable to me that I could have felt poisoned every day for so long. In my diary, I drew a light bulb to mark the moment.

When I ran out of 1.5-milligram pills, I had to divide the 4.5-milligram pills into nine parts to extract a 0.5-milligram dose. I tried using a jug, but the water turned yellow after a few days, which meant the chemicals were breaking down. I attempted a lines-of-cocaine method, separating the powder into sections using a knife, like I’d seen in movies. But the powder was so fine that it just became a smear. Finally, I settled on eyeballing the powder into nine plastic tubs, which the researchers confirmed was an acceptable method. 

In September, after upping the LDN dose to 1 milligram daily, my driving capacity quadrupled. My household chore capacity doubled. I started cycling short distances. At no point did I become so exhausted that I burst into tears, which was bizarre. The chronic congestion that had plagued me since my first SARS-CoV-2 infection vanished.

During that month, my work hours dropped — probably because I was dedicating more time to socializing, exercising, and having fun than lying in bed with my laptop working.

As a science journalist, I tend to treat bold claims with a fair amount of skepticism. But it was impossible to overstate the impact of this clinical trial on my life. To me, it was a jaw-dropping transformation. 

Each week, the researchers sent out a short questionnaire to track symptom improvement through the trial. I started ticking the boxes relating to no side effects and “decided improvement, partial remission of symptoms.”

At the end of the 12 weeks, I completed another 30-minute questionnaire about my Long COVID symptoms. Then, I (sadly) had to send any unused pills back to the pharmacy in Perth and the drug diary to the researchers in Queensland. 

Upon receipt, the researchers would reveal whether I had been allocated to the placebo or drug group. However, so I could write this personal essay without overexaggerating the significance of my n=1 experience, I chose not to find out which group I was in. 

I’m now taking prescription LDN. In March 2025, I increased my dose to 2 milligrams and worked full-time for the first time since getting COVID-19. My partner is also trialing LDN with less pronounced, but promising, effects. 

Many people with Long COVID do not benefit from LDN. It’s possible that I have a subtype of Long COVID that responds particularly well to this drug or that my symptoms improved on their own. The only way to know for sure if LDN works for some people with Long COVID is to read the results of the study, which will be published later in 2025, and wait for larger studies to validate the findings.

The only way to know for sure if LDN works for some people with Long COVID is to read the results of the study, which will be published later in 2025, and wait for larger studies to validate the findings.

My top 10 tips for becoming a lab rat:

1. Don’t wait for the researchers to find you – email them if you’re interested in participating in a trial.
2. Expect the trial to take a long time to start.
3. If anything happens during the clinical trial that is confusing or unexpected, tell the researchers right away. They want to know if there’s an issue, and the information sheets do not cover every scenario.
4. If possible, have an independent physician who can offer support during the trial.
5. Expect a higher level of nerves than when trialing a new drug outside of a clinical trial.
6. If you experience side effects, contact the researchers immediately.
7. Don’t post to social media about your experience until the study is finished, as it could prejudice others who are yet to participate in the trial.
8. Print out the clinical trial information and go through it one step at a time.
9. Put key dates and dosages in your calendar.
10. Remember that you can drop out at any time for any reason.

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Felicity Nelson is a science and medical journalist based in Sydney, Australia. She has written for Nature, C&EN, ScienceAlert, Veritasium and The Guardian.

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