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The software, part of Microsoft’s nearly $19 billion bet on Nuance Communications and the future of artificial intelligence in healthcare, promises to generate notes in seconds but accuracy, liability and even issues like how the note gets formatted may make some doctors hesitate.
Most doctors will tell you they chose their profession because they want to help people. But aggravatingly, many doctors spend hours of their days behind screens rather than with patients, entering copious details into medical records that often require them to work late into the night.
Between government regulations and insurance requirements, filling out these details isn’t optional—but it puts a heavy emotional toll on top of an already stressful profession.
“Doctors absolutely despise the administrative burdens of medicine,” says Scott Smitherman, an internal medicine doctor and chief medical information officer of ambulatory care at health system Providence. “That’s one of the biggest drivers of burnout.”
For the past few years, Smitherman has been testing a technology that has the potential to ease some of the burden: an app that records doctor’s interactions with patients and uses artificial intelligence to generate notes for the medical record. The app, called the Dragon Ambient eXperience, or DAX, was developed by Nuance Communications, the artificial intelligence company Microsoft acquired for $18.8 billion in 2022.
While many of the 430 doctors at Providence using DAX so far like it, Smitherman says there have been two main obstacles when it comes to convincing more doctors to use it – “resistance to change” and “giving up the control” of note-writing no matter how much they detest it.
“In 20 years? Yeah, I think the vast majority of doctors are going to be doing all of their documentation using this kind of software. In five years? No.”…..Alex Lennox-Miller, lead health IT analyst at CB Insights
So far there has been a human quality reviewer checking the AI’s work before it’s sent to the doctor for a final review. But this summer Microsoft and Nuance will start rolling out a version that is fully automated and incorporates GPT-4 thanks to Microsoft’s partnership with OpenAI.
The software giant is hoping the fully automated version, which generates the note within seconds, will scale much faster than the previous version. But the real question for success is: will doctors cede control to imperfect machines to get a few minutes of their lives back?…
I’m a senior writer at Forbes covering healthcare technology, and I also write the InnovationRX newsletter. I was previously a healthcare reporter for POLITICO covering the European
Every week, Eli Gelfand, chief of general cardiology at Beth Israel Deaconess Medical Center in Boston, wastes a lot of time on letters he doesn’t want to write — all of them to insurers disputing his recommendations. A new drug for a heart failure patient. A CAT scan for a patient with chest pain. A new drug for a patient with stiff heart syndrome. “We’re talking about appeal letters for things that are life-saving,” says Gelfand, who is also an assistant professor at Harvard Medical School.
So when OpenAI’s ChatGPT began making headlines for generally coherent artificial intelligence-generated text, Gelfand saw an opportunity to save some time. He fed the bot some basic information about a diagnosis and the medications he’d prescribed (leaving out the patient’s name) and asked it to write an appeal letter with references to scientific papers.
ChatGPT gave him a viable letter — the first of many. And while the references may sometimes be wrong, Gelfand told Forbes the letters require “minimal editing.” Crucially, they have cut the time he spends writing them down to a minute on average. And they work.
Gelfand has used ChatGPT for some 30 appeal letters, most of which have been approved by insurers, he says. But he’s under no illusion that ChatGPT or the AI that powers it is going to save the U.S. healthcare system anytime soon. “It’s basically making my life a little easier and hopefully getting the patients the medications they need at a higher rate,” Gelfand says. “This is a workaround solution for a problem that shouldn’t really exist.”
That problem: The U.S. spends more money on healthcare administration than any other country. In 2019, around a quarter of the $3.8 trillion spent on healthcare went to administrative issues like the ones bemoaned by Gelfand. It’s estimated around $265 billion of that was “wasteful” — unnecessary expenditures necessitated by the antiquated technology that undergirds the U.S. healthcare system.
Gelfand can use a chatbot to electronically generate an appeal letter. But he has to fax it to the insurer. And that encapsulates the challenge facing companies hoping to build time-saving AI back-office tools for a healthcare system stuck in the 1960s.
Cut The “Scut”
The fax machine isn’t going away anytime soon, says Nate Gross, cofounder and chief strategy officer of Doximity, a San Francisco-based social networking platform used by two million doctors and other healthcare professionals in the U.S. That’s why Doximity’s new workflow tool, DocsGPT, a chatbot that helps doctors write a wide range of letters and certificates, is connected to its online faxing tool.
“Our design thesis is to make it as easy as possible for doctors to interface with the novel digital standards, but also be backwards compatible with all the old stuff that healthcare actually runs on,” says Gross.
Often referred to as a “LinkedIn For Doctors,” Doximity has a $6.3 billion market cap and generates most of its revenue ($344 million in its fiscal year 2022) from pharma companies looking to advertise and health systems looking to hire. But it also offers a range of tools for doctors to help “cut through the scut” – medical slang for reducing administrative burden. The basic versions are generally free with upsells for enterprise integrations, says Gross.
DocsGPT is built on ChatGPT but is trained on healthcare data, such as anonymized insurance appeals letters. Doctors can use the tool to draft letters, including patient referrals, insurance appeals, thank you notes to colleagues, post-surgery instructions and even death certificates. It provides a library of curated prompts based on what other doctors have searched for in the past, and is designed to remind doctors who use it that it is not a medical professional.
Before each response DocsGPT generates, a disclaimer runs across the top, asking the user to “PLEASE EDIT FOR ACCURACY BEFORE SENDING.” In an earnings call earlier this month, cofounder and CEO Jeff Tangney was asked how Doximity planned to monetize DocsGPT. “I’ll make a joke here,” he replied. “We probably spent more time worrying about the liability of that product than the monetization of it so far.”
Bot-To-Bot
While DocsGPT might save some time for the doctor, the subsequent back and forth with insurance companies over fax and phone means it can still take days to verify a patient’s insurance benefits or get a prior authorization for a surgery approved. Currently, a person in a doctor’s office or hospital staring at a screen needs to call a person at an insurance company who is also staring at a screen to manually sort through the specific details of each patient’s insurance benefits.
That eats up a lot of time for both insurers and doctors, and a shortage of workers isn’t helping, “It’s not just about it being slow, it’s stuff is not getting done,” says Ankit Jain, cofounder and CEO of conversational AI startup Infinitus Systems. “There was [an insurer] we were talking to who had 32 trailers of faxes that they’re backlogged on.”
With Infinitus, which raised more than $50 million since he cofounded it in 2019, Jain is trying to build a future where instead of people endlessly discussing benefits and approvals, bots do the talking for them.
“When a doctor makes stuff up, that’s called lying. When a model makes stuff up, we use this odd phrase called hallucination.”
Jain, a former Googler and cofounder of the tech giant’s AI-focused fund Gradient Ventures, says the problem is that every doctor, insurer and health system records information in different formats. Unlike long-suffering health industry employees, AI can very quickly make sense of it. Infinitus has built its own models and doesn’t rely on OpenAI’s technology, but Jain says the underlying premise is the same: “What large language models do is, they say, ‘Throw all that data at us.’ And the large language models can extract the right connections between phrases and concepts.”
So far, the conversation is one-sided: Infinitus used large language models to create Eva Lightyear, a robot that has made more than 1 million calls to insurance companies on behalf of doctors to verify insurance benefits and prior authorization requirements. One day, he hopes Eva won’t be calling a human on the other end of the phone, but another robot — though not literally.
“It’s not robots talking to robots in English or exchanging faxes with each other,” says Jain. “That becomes an API. The future needs to be digital highways, where you just submit information, it’s judged, it’s adjudicated, and you get a response instantaneously.”
Crawling Ahead
While Jain may be optimistic about end-to-end automation, when it comes to adoption, chatbots and other kinds of AI-powered technology are facing a serious hurdle: Models like ChatGPT spout falsities as if they were true and have to be constantly retrained with the most up-to-date information out there.
“When a doctor makes stuff up, that’s called lying. When a model makes stuff up, we use this odd phrase called hallucination,” says Nigam Shah, chief data scientist at Stanford Healthcare.
ChatGPT was only trained on data available until 2021, and isn’t regularly updated. The field of medicine is constantly changing, with new guidelines, drugs and devices coming on the market, which means outdated data would pose a problem. Shah says he doesn’t see the possibility for broad adoption of generative AI in healthcare until there are systems in place to regularly retrain the models on new information and detect when the answers are wrong.
“We have to figure out how to verify the veracity and truthfulness of the output,” he says. There is also the risk that a doctor, no matter how well-intentioned, enters protected health information into ChatGPT. While anonymization and encryption are two ways to protect patient data, these measures alone may not be enough, says Linda Malek, a partner at the law firm Moses Singer.
“Even if you try to de-identify the data that is stored in ChatGPT, the AI capabilities can re-identify information,” she says. “ChatGPT is a particular target for cyber criminals as well, because it can be utilized for ransomware and different types of cyber attacks.”
Potential dangers aside, generative AI’s achievements continue to wow users. In January, researchers found that ChatGPT could pass the US medical licensing exam with “moderate accuracy” without any special training. (It’s not alone in this – at least two other AI programs, Google’s Flan-PaLM and Chinese AI-powered bot Xiaoyi, have also passed national medical licensing exams.)
The motivation was to get ChatGPT to perform standardized tasks without being specifically trained on any healthcare datasets, says Morgan Cheatham, a vice president at Bessemer Venture Partners and medical student at Brown University, who co-authored the study, which was published in PLOS Digital Health. While Cheatham says the results suggest ChatGPT’s large language models “have inherent value in healthcare applications,” he says any path forward is going to require a “crawl, walk, run approach.”
For now, the hope is generative AI could help doctors bring their attention and time to the most important part of their jobs: their patients. “What got me excited about becoming a doctor was the face-to-face interaction in the exam room with another human being,” says David Canes, a urologist at Beth Israel Lahey Health and cofounder of patient education startup Wellprept. “What’s intruded now is thousands of mouse clicks and keyboard entries.”
Canes says he plans to use ChatGPT for “low-stakes communications,” and he looks forward to the day when he can spend less time dealing with never-ending bureaucracy.
“My days would be perfect if they were just filled with patient care. I love that as much now as I ever did,” he says. “I look at these improvements and it makes me really hopeful that we’re on the verge of maybe a new era where the worst aspects of medicine can be minimized.”
Correction: The research involving ChatGPT taking the U.S. medical licensing exam was published in PLOS Digital Health in February.
I’m a senior writer at Forbes covering healthcare technology. I was previously a healthcare reporter for POLITICO covering the European Union from Brussels and the New Jersey
I am an assistant editor based in Columbia, Missouri covering consumer technology. I graduated from the Missouri School of Journalism with a master’s degree in magazine journalism
It’s understandable when you gain a few pounds after vacation or if you break your ankle and spend six weeks propped on the sofa bingeing obscure British cooking shows (and the chocolate scones to go with them).
But when you can’t zip your jeans for no freaking reason at all — you swear you’re not eating any more or exercising any less — it can feel like there’s some dark magic at play. You may find yourself standing on the bathroom scale, screaming into the void:
“Why am I gaining weight?!”
Deep breath. You got this.
Most likely, there’s something in your life that’s shifted just enough to make a difference, but not so much that you’d notice, says Alexandra Sowa, MD, an obesity specialist and clinical instructor of medicine at NYU Langone Health. “I see this all the time — you may not step on the scale for a while, and you feel like you haven’t changed anything, and all of a sudden you go to the doctor’s office and notice you’ve gained 10 or 20 pounds,” she says.
But that doesn’t mean it’s your destiny to go up another size every year. Here are some of the most likely reasons for unexplained weight gain, and how to stop it in its tracks.
Your insulin levels may be out of whack.
If you’ve been battling weight issues for a while and none of your efforts are moving the needle, make an appointment with your primary care doc or a weight-management physician, who can assess you for insulin resistance or prediabetes. (Your doctor can also test you for hypothyroidism, in which your thyroid gland doesn’t produce enough hormone, slowing down your metabolism and potentially leading to weight gain.)
“Insulin is the hormone that signals the body to pull glucose out of the bloodstream and store it in the muscles, liver, and fat,” explains Tirissa Reid, MD, an obesity medicine specialist at Columbia University Medical Center and Diplomate of the American Board of Obesity Medicine. “But when you’re overweight, the cells don’t recognize the insulin as well, so the pancreas has to pump out more and more — sometimes two or three times the normal amount — until the cells respond.”
(This is also common in women who have polycystic ovary syndrome — a condition in which the egg follicles in the ovaries bunch together to form cysts.) These high insulin levels keep the body in storage mode and make weight loss more difficult, says Dr. Reid. The beginning of this road is insulin resistance — when your pancreas is working overtime, but blood sugar levels are still normal.
All that extra work wears out the pancreas until it can barely do the job of keeping the blood sugar in normal range. Left unchecked, insulin resistance can lead to prediabetes, in which blood-sugar levels are slightly elevated; if that’s not treated, you can develop full-blown type-2 diabetes.
What you can do: The most effective way to reverse this trend is to eat a diet low in refined carbs and added sugars, and to become more physically active, since muscles respond better to insulin after exercise, says Dr. Reid.
She recommends either investing in a fitness tracker or simply using the one that comes with your phone. “People hear you need 10,000 steps each day, which sounds intimidating, but you can also use it just to see where you’re at and make doable increases,” Dr. Reid says. “If you’re at 2,000 steps, try to go up to 2,500 a day next week and continue to increase.”
Swapping to foods with a lower glycemic index (GI) — which means they’re digested more slowly, keeping blood-sugar levels steady — is also important for controlling your insulin levels. Dr. Sowa recommends these lower-GI food swaps: riced cauliflower instead of white rice; zucchini spirals or shirataki noodles (made from plant fiber) instead of pasta; and pumpernickel or stone-ground whole wheat bread instead of white bread or bagels.
Stress and exhaustion are throwing you off.
If you’re up at night worrying about your aging parents, your hormonal teens, and the general crappy state of the world, this can affect your metabolism. “Stress and lack of sleep can cause a cascade of hormonal changes that change your metabolism and affect your sense of hunger and fullness,” Dr. Sowa explains.
Stress pumps up the hormones ghrelin and cortisol, which increase your appetite and can make you crave carbs; at the same time, it dials down the hormone leptin, which helps you feel full. Not surprisingly, a recent Swedish study of 3,872 women over 20 years found that the more stressed you are by work, the likely you are to gain weight. Stress also affects your ability to get a good night’s sleep, and we know that lack of sleep can also throw off your metabolism rates and hunger cues.
What you can do: It’s easy — just fix the world and make everyone around you kinder and more sane.
Hm, maybe not. But you can manage your stress by downloading a free app such as Pacifica, (now Sanvello) which can help you work toward personal goals such as thinking positively and decreasing anxiety by sending you meditations and visualizations to do throughout the day. To sleep more soundly, you already know you should put down your phone, computer, and iPad an hour before bedtime, but new research shows that shutting out all light — including that sliver of moon through your window — can help with both sleep and metabolism.
A study at Northwestern University Feinberg School of Medicine found that after subjects spent just one night of sleeping in a room with dim light, insulin levels the next morning were significantly higher than those who slept in complete darkness, potentially affecting metabolism rates. So consider investing in some good blackout curtains.
Your allergy pills are to blame.
“We’re not 100% sure why, but it’s believed that histamines, chemicals produced by your immune system to fight allergens, have a role in appetite control,” says Dr. Reid. That means that “antihistamines may cause you to eat more,” she says. A large study from Yale University confirmed that there is a correlation between regular prescription antihistamine use and obesity. Dr. Reid points out that some antihistamines such as Benadryl also cause drowsiness, which could make you less apt to exercise.
What you can do: If you suffer from seasonal allergies and are constantly taking antihistamines, talk to your allergist about alternative treatments such as nasal steroid sprays, nasal antihistamines (which have less absorption into the bloodstream, and therefore less effect on hunger), leukotriene inhibitors such as Singulair, or allergy shots, suggests Jeffrey Demain, MD, founder of the Allergy Asthma and Immunology Center of Alaska.
He also says that managing your environment — using a HEPA filter, washing your sheets frequently in hot water, keeping pets out of your bedroom — can help reduce the need for allergy meds. While you’re at it, do an inventory of any prescription medications you’re taking that are known to cause weight gain (including certain antidepressants, beta blockers, corticosteroids, and the birth control shot) and discuss with your doctor if there are equally effective alternatives that don’t affect weight, says Dr. Reid.
Your portions are probably bigger than you think.
Anyone who’s ever sat in a vinyl booth staring down a bowl of pasta big enough for a toddler to swim knows that portion sizes in America are ginormous. But research from the University of Liverpool published last year found that after being served large-size meals outside the home, people tend to serve themselves larger portions up to a week later, meaning supersizing appears to be normalized, says Lisa R. Young, PhD, author of Finally Full, Finally Slim.
Even if your home-cooked portions have crept up only 5% over the last few years, that can be an extra 100 calories a day, which adds up to more than 11 pounds a year, says Lawrence Cheskin, MD, chair of nutrition and food studies at George Mason University. And the official measure of what’s a “serving” isn’t helping.
“The FDA standards for how many ‘servings’ are in a package of food are based on how much food people actually eat, not how much you should eat,” Young explains. For example, to reflect the growing appetites of the American people, a serving of ice cream was increased last year from 1/2 cup to 2/3 cup. More realistic, perhaps, but still more calories than many of us need.
Here’s what to do: First, Young suggests you spend a few days getting a reality check on how much food you’re actually eating at each meal. “When you pour the cereal in the bowl in the morning, pour it back into a measuring cup. What you thought was 1 cup might actually be 3 cups, especially if you’re using a large bowl,” she says.
Also, instead of relying on a government agency (or the chef at your favorite restaurant) at to tell you how much to eat, learn to listen to your own body, says Young. “Serve yourself just one modest portion on a small plate, and when you’re done, wait 20 minutes,” she says. It takes that long for the hormones in your belly to reach your brain and tell it you’re full. If you get to 20 minutes and your stomach is grumbling, have a few more bites.
You’re eating the right thing, but at the wrong time.
Let’s say you switched jobs recently, and dinner is now at 9 p.m. instead of 6:30. Or your new habit of streaming Neflix until the wee hours also involves snacking well past midnight. Even if you’re not eating more, per se, this change might account for the extra poundage.
There’s a delicate dance between your circadian rhythm (the way your body and brain respond to the daily cues of daylight and darkness) and your calorie intake that can mean that same sandwich or bowl of fro-yo that you eat at lunchtime may actually cause more of a weight gain when eaten at night.
A 2017 study at Brigham & Women’s Hospital found that when college students ate food closer to their bedtime — and therefore closer to when the sleep-inducing hormone melatonin was released — they had higher percentages of body fat and a higher body-mass index. The researchers theorize that this is because the amount of energy your body uses to digest and metabolize food drops as your inner clock tells it to get ready to snooze.
What you can do: There are a few life hacks to keep the late-night snacking to a minimum. Dr. Sowa suggests you commit to writing down every bite you eat after dinner: “Whether it’s on a sticky pad or on an app, keeping track of what you’re eating, how much you’re eating, and how you’re feeling when you eat it will hold you accountable for the calories, and it will also help you figure out if you’re truly hungry or just bored,” she says.
She also suggests capping off your evening meal with a brain-and-heart-healthy tablespoon of Fish Oil. “It’s a healthy fat that coats your stomach and makes you feel less hungry later,” she says.
Your “healthy” food is packed with calories.
You could be eating the cleanest, most organic, dietitian-approved variety of plant-based, or ethically farmed food, but that doesn’t mean the calories evaporate into pixie dust when they go in your mouth.
And in fact, research has shown that when you’re eating something healthy — avocados, salad, yogurt, whole grains — part of your attention to fullness tends to turn off. “Even when you’re eating healthy foods, you really have to pay attention to your hunger and satiety signals,” says Véronique Provencher, PhD, professor of nutrition at Université Laval in Quebec City, Canada.
“In several studies we have found that when we perceive a food as healthy it creates a bias in our own judgment, and we think (consciously or not) that we can eat more of it, no problem. We think a salad is healthy, so we feel we can eat as much as we want with as many dressings or toppings as we want.”
What you can do First of all, treat eating like going to the theater, and turn your phone off — and turn away from the computer or TV screen. “We have found when you are eating and working on your computer or watching TV or on a screen you are disconnected from hunger and satiety clues,” says Provencher.
Something else that may help, other experts say, is to become more aware of portion sizes and what’s in your food. Try the Weight Watchers app, which helps you sort out questions like which “healthy” yogurts are full of sugar and calories, and how much avocado you should spread on your toast.
Weight loss, health and body image are complex subjects — before deciding to go on a diet, we invite you gain a broader perspective by reading our exploration into the hazards of diet culture.
Your age might be a factor.
Each birthday you celebrate brings on one undeniable change: your basal resting metabolism (the rate at which your body at rest burns the energy you take in from food) slows down. “It’s not a dramatic drop,” says Dr. Cheskin. “But as you age, you’re probably also getting less active and more tired, and your body tends to lose muscle mass, which burns calories more efficiently than fat.”
So even if you’re eating the exact same amount of food as you did when you were younger, your body is simply not burning it off as effectively as it did during the glory days of your 20s.
Here’s what to do: You can only budge your BMR a little, but there are a few things you can do to make the math work in your favor. The first is to build up your calorie-burning muscle, says fitness expert Michele Olson, PhD, a professor of sports science and physical education at Huntingdon College. “Keep up cardio three times a week for 30 minutes, but add challenging weight training on top of that,” she says.
Olson recommends these exercises that can be done at home. Start with what you can do and build up to 2 sets of 12 of each, every other day.
Chair squats: Sit of the edge of a chair with arms crossed; stand up and sit back down for one rep.
Triceps dips: Sit on the edge of a chair, supporting yourself with your arms, slide off, walking your feet out in front of you a few steps; with knees bent and body below the seat, bend elbows; press up until arms are straight. (Use a chair without wheels!)
Push-ups, from your knees, or full push-ups, if you can.
Another metabolism-boosting strategy: Replace some of the carbohydrates in your diet with proteins, which take more energy to digest, therefore burning off more calories through diet-induced thermogenesis, as well as making you feel fuller for longer.
Dr. Sowa suggests you eat about 100 grams of protein over the course of the day, filling your plate with lean chicken, fish, shrimp, or plant-based proteins such as garbanzo beans, tempeh, and edamame, to give your meals more metabolism bang for your buck. This may only add up to a weight loss of a few pounds a year, but combined with exercise, the cumulative effect can be significant, says Dr. Sowa.
Marisa Cohen is a Contributing Editor in the Hearst Health Newsroom, who has covered health, nutrition, parenting, and the arts for dozens of magazines and web sites over the past two decades.
When the novel coronavirus began to spread across the world in February 2020, Freya Sawbridge was caught in a bind. The 27-year-old was living in Scotland, but when businesses and borders began to close she packed up and flew home to Auckland, New Zealand. On arrival, she felt feverish and couldn’t smell or taste food.
In those early months of COVID-19, every new symptom made global headlines. Freya got tested and the result came back positive. Panic began to set in. “I was in the first wave,” she says.
“There weren’t many people that had had it by that stage, so I knew no-one could tell me anything about it, no-one could offer me any real guidance because it was a new disease.
“No-one can tell you anything about it or when it might end. You’re just existing in the unknown.”
Freya found herself on a vicious merry-go-round of symptoms — fever, sore throat, dizziness, muscle spasms, numbness, chest pains and fatigue. The symptoms kept coming around and around and around.
After 12 days, she stabilised, but four days later the pains returned with a vengeance. It would be a sign of things to come. Freya would relapse five more times over the next six months.
“Each relapse, the depth of it would last about 10 days and then I would take about four or five days emerging from it, have about two or three symptom-free days before another relapse would kick off,” Freya says. “The symptoms would come and then dissipate…
“I’d have a fever for an hour, a sore throat for four hours, then dizziness for two hours, then I was OK for an hour.
“…it was just a cycle like that.”
By April 2020, “long COVID” was being mentioned in Facebook support groups. It’s not an official medical term; it was coined out of necessity by the public. It’s sometimes also referred to as long-haul COVID, chronic COVID and post-acute sequelae of COVID-19 (PASC).
Exactly what constitutes long COVID remains extremely broad. Earlier this month, the World Health Organization released its clinical case definition of what it calls ‘post COVID-19 condition’, which affects people at least two months after a COVID-19 infection with symptoms that “cannot be explained by an alternative diagnosis”.
For Freya, symptoms like chest pain and a sore throat were manageable, but the dizziness and “brain pain” she experienced were debilitating. “It’s as if there was like a mini person in my brain and he was scraping my whole brain with a rake, it was just pain,” Freya says.
“And then it would feel like it would flip on itself continuously and so it makes it really hard to sleep because you’re lying there and it feels like your brain is doing somersaults and then it’s also spinning.”
The memory loss was especially unnerving. “Heaps of people say, ‘Oh, I get that and I’m young,’ but it just feels different… you’d be mid-sentence and then completely forget what you’re talking about.”
Doctors couldn’t give Freya any clarity about what was happening to her because the reality was no-one knew enough about COVID-19.
The hardest was month four, when Freya ended up in hospital from her long COVID symptoms. In a journal entry dated August 24, 2020, she wrote: “Must stay hopeful. Must believe I will get better.” After so many relapses, she had fallen into a depression filled with grief, for her healthy body and her old life.
To this day, we still know very little about long COVID, including just how many people it affects.
Various studies over the past 18 months estimate long COVID can affect anywhere from 2.3 per cent to 76 per cent of COVID-19 cases. It’s important to remember these studies vary in method, with some tracking only hospitalised cases and some relying on self-reported surveys.
A comprehensive study by the University of NSW places the figure at around 5 per cent. Researchers tracked 94 per cent of all COVID-19 cases in NSW from January to May 2020. Of the 3,000 people surveyed, 4.8 per cent still had symptoms after three months.
The uncertainty doesn’t end there. We also have no idea why long COVID hits certain people, but not others. It’s been likened to a kind of “Russian roulette”.
Studies have consistently found long COVID to be more prevalent in women, older people and those with underlying conditions, but there’s evidence to indicate children are capable of developing long COVID too.
Being young and fit is no guarantee you’re safe either, and nor is having a minor initial COVID case. The longer-term symptoms can strike even those who had few initial symptoms.
Those with long COVID report a constellation of symptoms including fatigue, dizziness, shortness of breath, brain fog, memory loss, loss of taste and smell, numbness, muscle spasms and irritable bowels.
One of Australia’s leading researchers in the area, Professor Gail Matthews, says long COVID is likely a spectrum of different pathologies.
Dr Matthews is the Head of Infectious Diseases at St Vincent’s Hospital and Head of the Therapeutic Vaccine and Research Program at the Kirby Institute at UNSW. She says the issue of long COVID will be huge on a global scale and it’s crucial to understand it better.
One theory is that COVID-19 can trigger the immune system to behave in an abnormal way, releasing cytokines that can make you feel unwell with fatigue and other symptoms.
Another is that there could be some elements of the virus — called antigen persistence — somewhere in the body that continues to trigger an ongoing activation in the immune system.
There’s also early evidence that vaccination might help reduce or even prevent long-term symptoms. Freya stopped relapsing around month seven, although her senses of taste and smell still haven’t fully recovered. She says rest was a big part of her recovery.
“Other people, if they don’t have parental support, or they have to work because they’ve got no savings, or they can’t rely on their parents, or they have young kids — I have no idea how they got through it, because it would have been impossible in my eyes,” Freya says.
Judy Li is in an impossible situation. An all-encompassing fatigue has taken hold of her mind and body, stripping away her ability to work, parent or plan for the future.
The 37-year-old got COVID-19 in March 2020 while an inpatient at a Melbourne hospital. She had been struggling after giving birth to her second child and was getting the help she needed.
Despite her anxieties, Judy’s case was very mild and it wasn’t until three months later when her three-year-old brought a bug home from day care that she realised something was wrong.
As day-care bugs so often do, it ripped through the young family. “It felt like I hit a brick wall, I was a lot worse than everyone else,” Judy says.
“It wasn’t the usual symptoms… I was just really lethargic, really fatigued and I remember at about the three-week mark of having those symptoms, that kind of fatigue, I thought, ‘this isn’t right, this is a bit odd.’”
Her fatigue is not like being tired, it’s a different kind of exhaustion, a severe lack of energy that doesn’t replenish after sleep.
“This is like something you feel in your limbs; you feel like they’re really heavy, they’ve got this kind of, I wouldn’t say ouch-kind of pain, but it’s sort of an achiness to your limbs,” she says.
The fatigue comes and goes, but Judy has noticed it can flare up when she gets sick or when she expends herself physically or mentally.
One of the worst episodes came after an eight-hour trip to Canberra for Christmas to visit her in-laws. “I woke up and I was completely paralysed,” Judy says. Distressed, in tears, she could only call out to her partner for help.
“I just did not have the strength to move my limbs and I kept trying and trying and trying and eventually he helped me up. “I sort of dragged my arm up, I could barely hold a glass of water and he’d help me to drink out of it. If I had to go to the toilet, he had to basically carry me.”
This fatigue has derailed Judy’s life because when it sets in, she never knows how long it’s going to last or whether it will go away. It makes work and parenting impossible. Judy’s two young children don’t understand what’s wrong with mum or why she can’t get out of bed.
“When the kids are crying at home, I can’t go and soothe them,” she says.
“This is not a lack of motivation, it’s like I want to get up and I want to go to my children.
“I want to get up, I’ve got work I need to do. I want to get up and even go get something to eat, I’m hungry, but I can’t actually tell my body to move in that way.”
Fatigue or post-exertional malaise is one of the most common symptoms of long COVID, but it’s also a very common symptom in myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a biological disease affecting an estimated 250,000 Australians.
There are striking similarities between long COVID and ME/CFS. Both can cause symptoms such as fatigue, dizziness, memory loss or ‘brain fog’, and irritable bowel, and both are likely to encompass a range of different pathologies.
ME/CFS is usually triggered by a viral infection — ebola, dengue fever, glandular fever, epstein barr, ross river virus, SARS and even the more common influenza have all left trails of chronically ill people in their wake.
Experts have even questioned whether long COVID could be ME/CFS by another name, although the jury is still out on that theory. ME/CFS has been around for decades but we still don’t know much about it.
Australian advocacy groups desperately want to see more research and support to help people with this chronic illness navigate medical, financial and accommodation services. They also say doctors need better education to diagnose and treat the condition early on.
Bronwyn Caldwell knows what it’s like to live with a condition that no-one understands or knows how to treat. She’s lived with ME/CFS for 20 years, ever since a suspected case of glandular fever in her 20s.
The 46-year-old from South Australia is adamant the early advice from her doctor to rest was the reason her condition didn’t immediately worsen. She was able to work part-time as a brewer up until 2013 but a relapse has left her mostly bed-bound.
Bronwyn considers herself lucky — her illness was validated by doctors and family, she doesn’t have cognitive difficulties and isn’t in pain. But her voice begins to break when mentioning that most people with ME/CFS face stigma that they’re being lazy or faking their illness.
“I can’t imagine what it’s really like to have everyone in your life say you’re just being lazy, because the reality is all of us beat ourselves up to that all the time,” she says.
A 2018 study published in the Journal of Health Psychology looking at links between people with chronic illness and suicidal ideation found stigma, misunderstanding and unwarranted advice exacerbates patients’ feelings of overall hopelessness.
Long COVID is creating a cohort of people vulnerable to the same thing, and Judy herself has sometimes wondered whether her family would be better off without her (which, of course, it wouldn’t).
“I honestly go through periods where I wish COVID had killed me instead of just left me with this, this big burden,” she says. With no sick leave left, Judy has had to take unpaid time off work.
It’s a big blow for the high-earning, career-driven project manager who took pride in handling stressful situations and juggling multiple tasks. These days, her mind doesn’t work like it used to.
“It’s just little things like struggling to find the word that I just knew… I would know… sorry… like being able to construct sentences,” she says with an ironic laugh.
“I can try to read something but it just seems like I have to read it over and over and over again. “I frequently walk into a room and can’t remember why, when I would put something down, seriously, two minutes later I have no idea where it is. “I just feel like I’m losing my mind.”
In the COVID-ravaged UK, daily cases peaked at more than 68,000 and daily deaths at more than 1,300. It’s a situation few in Australia — where we have enjoyed long periods of little-to-no community transmission — can fully appreciate.
Adam Attia was living in London through most of 2020 and says it was almost rare if you hadn’t had COVID-19. “I’ve known of people that had given it to their parents and it killed their parents,” the 30-year-old Australian says. “People that we knew on our street had passed away.”
So one day around August, when Adam couldn’t taste the wasabi on his sushi, he immediately knew what was wrong. “I just started to go through the kitchen for things like garlic — I had a whole garlic, I couldn’t taste anything. I ate a lemon like an apple and couldn’t taste a thing.
“I ate ginger like a cannibal, like I ate it with all of the bumps and things on it and couldn’t taste a thing.”
But Adam’s infection was mild and he spent his 10-day isolation staying active. Life went on as normal until three months later, after a trip to Croatia. On the flight back to London, somewhere above Germany, Adam felt an excruciating pain in his stomach. He felt like he was going to vomit, he couldn’t breathe and his head began to spin.
The flight crew didn’t know what to do, contemplating an emergency landing in Berlin while Adam desperately sucked air from a vent they’d given to help him breathe.
The flight managed to land in London and Adam was escorted off the plane. At the hospital, doctors ran tests for internal bleeding and signs of reflux or gastritis but they all turned up empty.
In the weeks and months after that flight, as little as two hours of work would leave Adam shattered and disorientated.
His symptoms are like dominoes. Exhaustion leads to stomach pain, which leads to nausea, faintness and breathlessness.
Adam has learned to manage his symptoms and as soon as he feels the exhaustion creeping in he takes an anti-nausea pill, uses the asthma puffer he now has to carry with him and finds somewhere to lie down.
He ended up moving back to Australia to sort out his health issues, but it wasn’t until a doctor at St George Hospital in Sydney mentioned Adam’s symptoms could be an effect of COVID-19 that he twigged.
“Is it from COVID? Look, I could be shooting in the dark, I don’t actually know,” Adam says. “But what I do know is I didn’t have these [symptoms] before COVID, so I guess it’s more of an educated guess.”
Much about long COVID remains exactly that. More research is needed to really know what’s going on.
The US and UK have allocated billions of dollars into research and set up long COVID clinics to help patients find the right treatment. The Australian government has provided $15 million for research grants into the long-term health effects of COVID-19 and the nation’s vaccination efforts through the Medical Research Future Fund.
As Australia moves beyond lockdowns towards a future where most Australians are vaccinated, borders are open and COVID-19 is actively spreading through communities, this research will be crucial in our understanding of the long-term health issues and the impact on individuals, families, workplaces and the economy.
For now, Dr Matthews says the biggest take-home is that we don’t know who is or isn’t susceptible to long COVID.
“One of the biggest messages is that it’s very hard to know who this will strike.”
Health officials in Victoria have already highlighted the plight of long COVID patients as part of their drive to encourage more people to get vaccinated, as experts say it probably can prevent long COVID.
Dr Matthews says it’s important Australia recognises long COVID as a real issue and makes sure there is appropriate support to help people.
“Even if it’s just an understanding that this condition exists, and recognition that it exists, as opposed to expecting these people to return to full health,” she says.
But until we know more, those like Freya, Judy and Adam won’t have the closure of knowing exactly what’s happened to them.
“It’s hard to wrap your head around,” Judy says, “to say this is potentially a life sentence”. “There’s no defining this is as bad as it gets, you know? “This is just the big mystery question mark.”
ILLUSTRATION BY YUNJIA YUAN FOR FORBES; GETTY IMAGES/DNY59; GETTY IMAGES/SUBJUG; GETTY IMAGES/NENOV; GETTY IMAGES/THAMRONGPAT THEERATHAMMAKORN
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