Thinking of using an activity tracker to achieve your exercise goals? Here’s where it can help – and where it probably won’t
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It’s that time of year when many people are getting started on their resolutions for the year ahead. Doing more physical activity is a popular and worthwhile goal.
If you’re hoping to be more active in 2024, perhaps you’ve invested in an activity tracker, or you’re considering buying one.
But what are the benefits of activity trackers? And will a basic tracker do the trick, or do you need a fancy one with lots of features? Let’s take a look.
Why use an activity tracker?
One of the most powerful predictors for being active is whether or not you are monitoring how active you are.
Most people have a vague idea of how active they are, but this is inaccurate a lot of the time. Once people consciously start to keep track of how much activity they do, they often realise it’s less than what they thought, and this motivates them to be more active.
You can self-monitor without an activity tracker (just by writing down what you do), but this method is hard to keep up in the long run and it’s also a lot less accurate compared to devices that track your every move 24/7.
By tracking steps or “activity minutes” you can ascertain whether or not you are meeting the physical activity guidelines (150 minutes of moderate to vigorous physical activity per week).
It also allows you to track how you’re progressing with any personal activity goals, and view your progress over time. All this would be difficult without an activity tracker.
Research has shown the most popular brands of activity trackers are generally reliable when it comes to tracking basic measures such as steps and activity minutes.
But wait, there’s more
Many activity trackers on the market nowadays track a range of other measures which their manufacturers promote as important in monitoring health and fitness. But is this really the case? Let’s look at some of these.
Resting heart rate
This is your heart rate at rest, which is normally somewhere between 60 and 100 beats per minute. Your resting heart rate will gradually go down as you become fitter, especially if you’re doing a lot of high-intensity exercise. Your risk of dying of any cause (all-cause mortality) is much lower when you have a low resting heart rate.
So, it is useful to keep an eye on your resting heart rate. Activity trackers are pretty good at tracking it, but you can also easily measure your heart rate by monitoring your pulse and using a stopwatch.
Heart rate during exercise
Activity trackers will also measure your heart rate when you’re active. To improve fitness efficiently, professional athletes focus on having their heart rate in certain “zones” when they’re exercising – so knowing their heart rate during exercise is important.
But if you just want to be more active and healthier, without a specific training goal in mind, you can exercise at a level that feels good to you and not worry about your heart rate during activity. The most important thing is that you’re being active.
Also, a dedicated heart rate monitor with a strap around your chest will do a much better job at measuring your actual heart rate compared to an activity tracker worn around your wrist.
Maximal heart rate
This is the hardest your heart could beat when you’re active, not something you could sustain very long. Your maximal heart rate is not influenced by how much exercise you do, or your fitness level.
Most activity trackers don’t measure it accurately anyway, so you might as well forget about this one.
VO₂max
Your muscles need oxygen to work. The more oxygen your body can process, the harder you can work, and therefore the fitter you are.
VO₂max is the volume (V) of oxygen (O₂) we could breathe maximally (max) over a one minute interval, expressed as millilitres of oxygen per kilogram of body weight per minute (ml/kg/min). Inactive women and men would have a VO₂max lower than 30 and 40 ml/kg/min, respectively. A reasonably good VO₂max would be mid thirties and higher for women and mid forties and higher for men.
VO₂max is another measure of fitness that correlates well with all-cause mortality: the higher it is, the lower your risk of dying.
For athletes, VO₂max is usually measured in a lab on a treadmill while wearing a mask that measures oxygen consumption. Activity trackers instead look at your running speed (using a GPS chip) and your heart rate and compare these measures to values from other people.
If you can run fast with a low heart rate your tracker will assume you are relatively fit, resulting in a higher VO₂max. These estimates are not very accurate as they are based on lots of assumptions. However, the error of the measurement is reasonably consistent. This means if your VO₂max is gradually increasing, you are likely to be getting fitter.
So what’s the take-home message? Focus on how many steps you take every day or the number of activity minutes you achieve. Even a basic activity tracker will measure these factors relatively accurately. There is no real need to track other measures and pay more for an activity tracker that records them, unless you are getting really serious about exercise.
Corneel Vandelanotte, Professorial Research Fellow: Physical Activity and Health, CQUniversity Australia
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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LGBTQ+ People Relive Old Traumas as They Age on Their Own
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Bill Hall, 71, has been fighting for his life for 38 years. These days, he’s feeling worn out.
Hall contracted HIV, the virus that can cause AIDS, in 1986. Since then, he’s battled depression, heart disease, diabetes, non-Hodgkin lymphoma, kidney cancer, and prostate cancer. This past year, Hall has been hospitalized five times with dangerous infections and life-threatening internal bleeding.
But that’s only part of what Hall, a gay man, has dealt with. Hall was born into the Tlingit tribe in a small fishing village in Alaska. He was separated from his family at age 9 and sent to a government boarding school. There, he told me, he endured years of bullying and sexual abuse that “killed my spirit.”
Because of the trauma, Hall said, he’s never been able to form an intimate relationship. He contracted HIV from anonymous sex at bath houses he used to visit. He lives alone in Seattle and has been on his own throughout his adult life.
“It’s really difficult to maintain a positive attitude when you’re going through so much,” said Hall, who works with Native American community organizations. “You become mentally exhausted.”
It’s a sentiment shared by many older LGBTQ+ adults — most of whom, like Hall, are trying to manage on their own.
Of the 3 million Americans over age 50 who identify as gay, bisexual, or transgender, about twice as many are single and living alone when compared with their heterosexual counterparts, according to the National Resource Center on LGBTQ+ Aging.
This slice of the older population is expanding rapidly. By 2030, the number of LGBTQ+ seniors is expected to double. Many won’t have partners and most won’t have children or grandchildren to help care for them, AARP research indicates.
They face a daunting array of problems, including higher-than-usual rates of anxiety and depression, chronic stress, disability, and chronic illnesses such as heart disease, according to numerous research studies. High rates of smoking, alcohol use, and drug use — all ways people try to cope with stress — contribute to poor health.
Keep in mind, this generation grew up at a time when every state outlawed same-sex relations and when the American Psychiatric Association identified homosexuality as a psychiatric disorder. Many were rejected by their families and their churches when they came out. Then, they endured the horrifying impact of the AIDS crisis.
“Dozens of people were dying every day,” Hall said. “Your life becomes going to support groups, going to visit friends in the hospital, going to funerals.”
It’s no wonder that LGBTQ+ seniors often withdraw socially and experience isolation more commonly than other older adults. “There was too much grief, too much anger, too much trauma — too many people were dying,” said Vincent Crisostomo, director of aging services for the San Francisco AIDS Foundation. “It was just too much to bear.”
In an AARP survey of 2,200 LGBTQ+ adults 45 or older this year, 48% said they felt isolated from others and 45% reported lacking companionship. Almost 80% reported being concerned about having adequate social support as they grow older.
Embracing aging isn’t easy for anyone, but it can be especially difficult for LGBTQ+ seniors who are long-term HIV survivors like Hall.
Related Links
- Americans With HIV Are Living Longer. Federal Spending Isn’t Keeping Up. Jun 17, 2024
- ‘Stonewall Generation’ Confronts Old Age, Sickness — And Discrimination May 22, 2019
- Staying Out Of The Closet In Old Age Oct 17, 2016
Of 1.2 million people living with HIV in the United States, about half are over age 50. By 2030, that’s estimated to rise to 70%.
Christopher Christensen, 72, of Palm Springs, California, has been HIV-positive since May 1981 and is deeply involved with local organizations serving HIV survivors. “A lot of people living with HIV never thought they’d grow old — or planned for it — because they thought they would die quickly,” Christensen said.
Jeff Berry is executive director of the Reunion Project, an alliance of long-term HIV survivors. “Here people are who survived the AIDS epidemic, and all these years later their health issues are getting worse and they’re losing their peers again,” Berry said. “And it’s triggering this post-traumatic stress that’s been underlying for many, many years. Yes, it’s part of getting older. But it’s very, very hard.”
Being on their own, without people who understand how the past is informing current challenges, can magnify those difficulties.
“Not having access to supports and services that are both LGBTQ-friendly and age-friendly is a real hardship for many,” said Christina DaCosta, chief experience officer at SAGE, the nation’s largest and oldest organization for older LGBTQ+ adults.
Diedra Nottingham, a 74-year-old gay woman, lives alone in a one-bedroom apartment in Stonewall House, an LGBTQ+-friendly elder housing complex in New York City. “I just don’t trust people,“ she said. “And I don’t want to get hurt, either, by the way people attack gay people.”
When I first spoke to Nottingham in 2022, she described a post-traumatic-stress-type reaction to so many people dying of covid-19 and the fear of becoming infected. This was a common reaction among older people who are gay, bisexual, or transgender and who bear psychological scars from the AIDS epidemic.
Nottingham was kicked out of her house by her mother at age 14 and spent the next four years on the streets. The only sibling she talks with regularly lives across the country in Seattle. Four partners whom she’d remained close with died in short order in 1999 and 2000, and her last partner passed away in 2003.
When I talked to her in September, Nottingham said she was benefiting from weekly therapy sessions and time spent with a volunteer “friendly visitor” arranged by SAGE. Yet she acknowledged: “I don’t like being by myself all the time the way I am. I’m lonely.”
Donald Bell, a 74-year-old gay Black man who is co-chair of the Illinois Commission on LGBTQ Aging, lives alone in a studio apartment in subsidized LGBTQ+-friendly senior housing in Chicago. He spent 30 years caring for two elderly parents who had serious health issues, while he was also a single father, raising two sons he adopted from a niece.
Bell has very little money, he said, because he left work as a higher-education administrator to care for his parents. “The cost of health care bankrupted us,” he said. (According to SAGE, one-third of older LGBTQ+ adults live at or below 200% of the federal poverty level.) He has hypertension, diabetes, heart disease, and nerve damage in his feet. These days, he walks with a cane.
To his great regret, Bell told me, he’s never had a long-term relationship. But he has several good friends in his building and in the city.
“Of course I experience loneliness,” Bell said when we spoke in June. “But the fact that I am a Black man who has lived to 74, that I have not been destroyed, that I have the sanctity of my own life and my own person is a victory and something for which I am grateful.”
Now he wants to be a model to younger gay men and accept aging rather than feeling stuck in the past. “My past is over,” Bell said, “and I must move on.”
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News’ free Morning Briefing.
This article first appeared on KFF Health News and is republished here under a Creative Commons license.
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Eyes for Alzheimer’s Diagnosis: New?
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It’s Q&A Time!
This is the bit whereby each week, we respond to subscriber questions/requests/etc
Have something you’d like to ask us, or ask us to look into? Hit reply to any of our emails, or use the feedback widget at the bottom, and a Real Human™ will be glad to read it!
Q: As I am a retired nurse, I am always interested in new medical technology and new ways of diagnosing. I have recently heard of using the eyes to diagnose Alzheimer’s. When I did some research I didn’t find too much. I am thinking the information may be too new or I wasn’t on the right sites.
(this is in response to last week’s piece on lutein, eyes, and brain health)
We’d readily bet that the diagnostic criteria has to do with recording low levels of lutein in the eye (discernible by a visual examination of macular pigment optical density), and relying on the correlation between this and incidence of Alzheimer’s, but we’ve not seen it as a hard diagnostic tool as yet either—we’ll do some digging and let you know what we find! In the meantime, we note that the Journal of Alzheimer’s Disease (which may be of interest to you, if you’re not already subscribed) is onto this:
See also:
- Journal of Alzheimer’s Disease (mixture of free and paid content)
- Journal of Alzheimer’s Disease Reports (open access—all content is free)
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Chiropractors have been banned again from manipulating babies’ spines. Here’s what the evidence actually says
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Chiropractors in Australia will not be able to perform spinal manipulation on children under the age of two once more, following health concerns from doctors and politicians.
But what is the spinal treatment at the centre of the controversy? Does it work? Is there evidence of harm?
We’re a team of researchers who specialise in evidence-based musculoskeletal health. I (Matt) am a registered chiropractor, Joshua is a registered physiotherapist and Giovanni trained as a physiotherapist.
Here’s what the evidence says.
Dmitry Naumov/Shutterstock Remind me, how did this all come about?
A Melbourne-based chiropractor posted a video on social media in 2018 using a spring-loaded device (known as the Activator) to manipulate the spine of a two-week-old baby suspended upside down by the ankles.
The video sparked widespread concerns among the public, medical associations and politicians. It prompted a ban on the procedure in young children. The Victorian health minister commissioned Safer Care Victoria to conduct an independent review of spinal manipulation techniques on children.
Recently, the Chiropractic Board of Australia reinstated chiropractors’ authorisation to perform spinal manipulation on babies under two years old. But this week, it backflipped, following heavy criticism from medical associations and politicians.
What is spinal manipulation?
Spinal manipulation is a treatment used by chiropractors and other health professionals such as doctors, osteopaths and physiotherapists.
It is an umbrella term that includes popular “back cracking” techniques.
It also includes more gentle forms of treatment, such as massage or joint mobilisations. These involve applying pressure to joints without generating a “cracking” sound.
Does spinal manipulation in babies work?
Several international guidelines for health-care professionals recommend spinal manipulation to treat adults with conditions such as back pain and headache as there is an abundance of evidence on the topic. For example, spinal manipulation for back pain is supported by data from nearly 10,000 adults.
For children, it’s a different story. Safer Care Victoria’s 2019 review of spinal manipulation found very few studies testing whether this treatment was safe and effective in children.
Studies were generally small and were of poor quality. Some of those small, poor-quality studies, suggest spinal manipulation provides a very small benefit for back pain, colic and potentially bedwetting – some common reasons for parents to take their child to see a chiropractor. But overall, the review found the overall body of evidence was very poor.
Spinal manipulation doesn’t seem to help young children with an ear infection. MIA Studio/Shutterstock However, for most other children’s conditions chiropractors treat – such as headache, asthma, otitis media (a type of ear infection), cerebral palsy, hyperactivity and torticollis (“twisted neck”) – there did not appear to be a benefit.
The number of studies investigating the effectiveness of spinal manipulation on babies under two years of age was even smaller.
There was one high-quality study and two small, poor quality studies. These did not show an appreciable benefit of spinal manipulation on colic, otitis media with effusion (known as glue ear) or twisted neck in babies.
Is spinal manipulation on babies safe?
In terms of safety, most studies in the review found serious complications were extremely rare. The review noted one baby or child dying (a report from Germany in 2001 after spinal manipulation by a physiotherapist). The most common complications were mild in nature such as increased crying and soreness.
However, because studies were very small, they cannot tell us anything about the safety of spinal manipulation in a reliable way. Studies that are designed to properly investigate if a treatment is safe typically include thousands of patients. And these studies have not yet been done.
Why do people see chiropractors?
Safer Care Victoria also conducted surveys with more than 20,000 people living in Australia who had taken their children under 12 years old to a chiropractor in the past ten years.
Nearly three-quarters said that was for treatment of a child aged two years or younger.
Nearly all people surveyed reported a positive experience when they took their child to a chiropractor and reported that their child’s condition improved with chiropractic care. Only a small number of people (0.3%) reported a negative experience, and this was mostly related to cost of treatment, lack of improvement in their child’s condition, excessive use of x-rays, and perceived pressure to avoid medications.
Many of the respondents had also consulted their GP or maternity/child health nurse.
What now for spinal manipulation in children?
At the request of state and federal ministers, the Chiropractic Board of Australia confirmed that spinal manipulation on babies under two years old will continue to be banned until it discusses the issue further with health ministers.
Many chiropractors believe this is unfair, especially considering the strong consumer support for chiropractic care outlined in the Safer Care Victoria report, and the rarity of serious reported harms in children.
Others believe that in the absence of evidence of benefit and uncertainty around whether spinal manipulation is safe in children and babies, the precautionary principle should apply and children and babies should not receive spinal manipulation.
Ultimately, high quality research is urgently needed to better understand whether spinal manipulation is beneficial for the range of conditions chiropractors provide it for, and whether the benefit outweighs the extremely small chance of a serious complication.
This will help parents make an informed choice about health care for their child.
Matt Fernandez, Senior lecturer and researcher in chiropractic, CQUniversity Australia; Giovanni E. Ferreira, NHMRC Emerging Leader Research Fellow, Institute of Musculoskeletal Health, University of Sydney, and Joshua Zadro, NHMRC Emerging Leader Research Fellow, Sydney Musculoskeletal Health, University of Sydney
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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Parenting a perfectionist? Here’s how you can respond
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Some children show signs of perfectionism from early on. Young children might become frustrated and rip up their drawing if it’s not quite right. Older children might avoid or refuse to do homework because they’re afraid to make a mistake.
Perfectionism can lead to children feeling overwhelmed, angry and frustrated, or sad and withdrawn.
And yet perfectionism isn’t considered all bad in our society. Being called a “perfectionist” can be a compliment – code for being a great worker or student, someone who strives to do their best and makes sure all jobs are done well.
These seemingly polarised views reflect the complex nature of perfectionism.
Annie Spratt/Unsplash What is perfectionism?
Researchers often separate perfectionism into two parts:
- perfectionistic strivings: being determined to meet goals and achieve highly
- perfectionistic concerns: worry about being able to meet high standards, and self-criticism about performance.
While perfectionistic strivings can be positive and lead to high achievement, perfectionistic concerns can lead to a higher chance of children developing eating disorders or anxiety and depression, and having lower academic achievement.
Perfectionistic concerns can result in lower academic achievement. Jessica Lewis/Unsplash Children and adolescents may experience perfectionism in relation to school work, sport, performance in art or music, or in relation to their own body.
Signs of perfectionistic concerns in children and adolescents may include:
- children being highly critical of themselves
- their reactions to mistakes seeming to be an overreaction
- intense preoccupation and worry over their standards and goals and/or procrastination
- significant change in performance, for example, lower academic results
- irritability and negative emotions, stress and feelings of worthlessness
- social problems with peers and friends, such as bullying and alienating themselves from peers.
A range of genetic, biological and environmental factors influence perfectionism in children. And as a parent, our role is important. While research evidence suggests we can’t successfully increase positive perfectionistic strivings in our children, harsh or controlling parenting can increase negative perfectionistic concerns in children.
Parents who are perfectionistic themselves can also model this to their children.
So, how can we walk the line between supporting our child’s interests and helping them to achieve their potential, without pressuring them and increasing the risk of negative outcomes?
Give them space to grow
A great metaphor is the gardener versus the carpenter described by psychology professor Alison Gopnik.
Instead of trying to build and shape our children by controlling them and their environment (like a carpenter), parents can embrace the spirit of the gardener – providing lots of space for children to grow in their own direction, and nourishing them with love, respect and trust.
Parents don’t need to control their child and their environment. Noah Silliman/Unsplash We can’t control who they become, so it’s better to sit back, enjoy the ride, and look forward to watching the person they grow into.
However, there is still plenty we can do as parents if our child is showing signs of perfectionism. We can role model to our children how to set realistic goals and be flexible when things change or go wrong, help our children manage stress and negative emotions, and create healthy balance in our family daily routine.
Set realistic goals
People with perfectionistic tendencies will often set unattainable goals. We can support the development of flexibility and realistic goal setting by asking curious questions, for example, “what would you need to do to get one small step closer to this goal?” Identifying upper and lower limits for goals is also helpful.
If your child is fixed on a high score at school, for example, set that as the “upper limit” and then support them to identify a “lower limit” they would find acceptable, even if they are less happy with the outcome.
This strategy may take time and practice to widen the gap between the two, but is useful to create flexibility over time.
If a goal is performance-based and the outcome cannot be guaranteed (for example, a sporting competition), encourage your child to set a personal goal they have more control over.
Parents can help children set goals they can achieve. liz99/Unsplash We can also have conversations about perfectionism from early on, and explain that everyone makes mistakes. In fact, it’s great to model this to our children – talking about our own mistakes and feelings, to show them that we ourselves are not perfect.
Talk aloud practices can help children to see that we “walk the walk”. For example, if you burn dinner you could reflect:
I’m disappointed because I put time and effort into that and it didn’t turn out as I expected. But we all make mistakes. I don’t get things right every time.
Manage stress and negative emotions
Some children and adolescents have a natural tendency towards perfectionism. Rather than trying to control their behaviour, we can provide gentle, loving support.
When our child or adolescent becomes frustrated, angry, sad or overwhelmed, we support them best by helping them to name, express and validate all of their emotions.
Parents may fear that acknowledging their child’s negative emotions will make the emotions worse, but the opposite is true.
Creating healthy balance
The building blocks of healthy child development are strong loving family relationships, good nutrition, creative play and plenty of physical activity, sleep and rest.
Perfectionism is associated with rigidity, and thinking that there is only one correct way to succeed. We can instead encourage flexibility and creativity in children.
Children’s brains grow through play. There is strong research evidence showing that creative, child-led play is associated with higher emotion regulation skills, and a range of cognitive skills, including problem-solving, memory, planning, flexibility and decision-making.
Play helps children’s brains grow. Mi Pham/Unsplash Play isn’t just for young children either – there’s evidence that explorative, creative play of any kind also benefits adolescents and adults.
There is also evidence that getting active outdoors in nature can promote children’s coping skills, emotion regulation and cognitive development.
Elizabeth Westrupp, Associate Professor in Psychology, Deakin University; Gabriella King, Associate Research Fellow, Deakin University, and Jade Sheen, Associate Professor, School of Psychology, Deakin University
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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Long-Covid Patients Are Frustrated That Federal Research Hasn’t Found New Treatments
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Erica Hayes, 40, has not felt healthy since November 2020 when she first fell ill with covid.
Hayes is too sick to work, so she has spent much of the last four years sitting on her beige couch, often curled up under an electric blanket.
“My blood flow now sucks, so my hands and my feet are freezing. Even if I’m sweating, my toes are cold,” said Hayes, who lives in Western Pennsylvania. She misses feeling well enough to play with her 9-year-old son or attend her 17-year-old son’s baseball games.
Along with claiming the lives of 1.2 million Americans, the covid-19 pandemic has been described as a mass disabling event. Hayes is one of millions of Americans who suffer from long covid. Depending on the patient, the condition can rob someone of energy, scramble the autonomic nervous system, or fog their memory, among many other http://symptoms.in/ addition to the brain fog and chronic fatigue, Hayes’ constellation of symptoms includes frequent hives and migraines. Also, her tongue is constantly swollen and dry.
“I’ve had multiple doctors look at it and tell me they don’t know what’s going on,” Hayes said about her tongue.
Estimates of prevalence range considerably, depending on how researchers define long covid in a given study, but the Centers for Disease Control and Prevention puts it at 17 million adults.
Despite long covid’s vast reach, the federal government’s investment in researching the disease — to the tune of $1.15 billion as of December — has so far failed to bring any new treatments to market.
This disappoints and angers the patient community, who say the National Institutes of Health should focus on ways to stop their suffering instead of simply trying to understand why they’re suffering.
“It’s unconscionable that more than four years since this began, we still don’t have one FDA-approved drug,” said Meighan Stone, executive director of the Long COVID Campaign, a patient-led advocacy organization. Stone was among several people with long covid who spoke at a workshop hosted by the NIH in September where patients, clinicians, and researchers discussed their priorities and frustrations around the agency’s approach to long-covid research.
Some doctors and researchers are also critical of the agency’s research initiative, called RECOVER, or Researching COVID to Enhance Recovery. Without clinical trials, physicians specializing in treating long covid must rely on hunches to guide their clinical decisions, said Ziyad Al-Aly, chief of research and development with the VA St Louis Healthcare System.
“What [RECOVER] lacks, really, is clarity of vision and clarity of purpose,” said Al-Aly, saying he agrees that the NIH has had enough time and money to produce more meaningful progress.
Now the NIH is starting to determine how to allocate an additional $662 million of funding for long-covid research, $300 million of which is earmarked for clinical trials. These funds will be allocated over the next four http://years.at/ the end of October, RECOVER issued a request for clinical trial ideas that look at potential therapies, including medications, saying its goal is “to work rapidly, collaboratively, and transparently to advance treatments for Long COVID.”
This turn suggests the NIH has begun to respond to patients. This has stirred cautious optimism among those who say that the agency’s approach to long covid has lacked urgency in the search for effective treatments.Stone calls this $300 million a down payment. She warns it’s going to take a lot more money to help people like Hayes regain some degree of health.“There really is a burden to make up this lost time now,” Stone said.
The NIH told KFF Health News and NPR via email that it recognizes the urgency in finding treatments. But to do that, there needs to be an understanding of the biological mechanisms that are making people sick, which is difficult to do with post-infectious conditions.
That’s why it has funded research into how long covid affects lung function, or trying to understand why only some people are afflicted with the condition.
Good Science Takes Time
In December 2020, Congress appropriated $1.15 billion for the NIH to launch RECOVER, raising hopes in the long-covid patient community.
Then-NIH Director Francis Collins explained that RECOVER’s goal was to better understand long covid as a disease and that clinical trials of potential treatments would come later.
According to RECOVER’s website, it has funded eight clinical trials to test the safety and effectiveness of an experimental treatment or intervention. Just one of those trials has published results.
On the other hand, RECOVER has supported more than 200 observational studies, such as research on how long covid affects pulmonary function and on which symptoms are most common. And the initiative has funded more than 40 pathobiology studies, which focus on the basic cellular and molecular mechanisms of long covid.
RECOVER’s website says this research has led to crucial insights on the risk factors for developing long covid and on understanding how the disease interacts with preexisting conditions.
It notes that observational studies are important in helping scientists to design and launch evidence-based clinical trials.
Good science takes time, said Leora Horwitz, the co-principal investigator for the RECOVER-Adult Observational Cohort at New York University. And long covid is an “exceedingly complicated” illness that appears to affect nearly every organ system, she said.
This makes it more difficult to study than many other diseases. Because long covid harms the body in so many ways, with widely variable symptoms, it’s harder to identify precise targets for treatment.
“I also will remind you that we’re only three, four years into this pandemic for most people,” Horwitz said. “We’ve been spending much more money than this, yearly, for 30, 40 years on other conditions.”
NYU received nearly $470 million of RECOVER funds in 2021, which the institution is using to spearhead the collection of data and biospecimens from up to 40,000 patients. Horwitz said nearly 30,000 are enrolled so far.
This vast repository, Horwitz said, supports ongoing observational research, allowing scientists to understand what is happening biologically to people who don’t recover after an initial infection — and that will help determine which clinical trials for treatments are worth undertaking.
“Simply trying treatments because they are available without any evidence about whether or why they may be effective reduces the likelihood of successful trials and may put patients at risk of harm,” she said.
Delayed Hopes or Incremental Progress?
The NIH told KFF Health News and NPR that patients and caregivers have been central to RECOVER from the beginning, “playing critical roles in designing studies and clinical trials, responding to surveys, serving on governance and publication groups, and guiding the initiative.”But the consensus from patient advocacy groups is that RECOVER should have done more to prioritize clinical trials from the outset. Patients also say RECOVER leadership ignored their priorities and experiences when determining which studies to fund.
RECOVER has scored some gains, said JD Davids, co-director of Long COVID Justice. This includes findings on differences in long covid between adults and kids.But Davids said the NIH shouldn’t have named the initiative “RECOVER,” since it wasn’t designed as a streamlined effort to develop treatments.
“The name’s a little cruel and misleading,” he said.
RECOVER’s initial allocation of $1.15 billion probably wasn’t enough to develop a new medication to treat long covid, said Ezekiel J. Emanuel, co-director of the University of Pennsylvania’s Healthcare Transformation Institute.
But, he said, the results of preliminary clinical trials could have spurred pharmaceutical companies to fund more studies on drug development and test how existing drugs influence a patient’s immune response.
Emanuel is one of the authors of a March 2022 covid roadmap report. He notes that RECOVER’s lack of focus on new treatments was a problem. “Only 15% of the budget is for clinical studies. That is a failure in itself — a failure of having the right priorities,” he told KFF Health News and NPR via email.
And though the NYU biobank has been impactful, Emanuel said there needs to be more focus on how existing drugs influence immune response.
He said some clinical trials that RECOVER has funded are “ridiculous,” because they’ve focused on symptom amelioration, for example to study the benefits of over-the-counter medication to improve sleep. Other studies looked at non-pharmacological interventions, such as exercise and “brain training” to help with cognitive fog.
People with long covid say this type of clinical research contributes to what many describe as the “gaslighting” they experience from doctors, who sometimes blame a patient’s symptoms on anxiety or depression, rather than acknowledging long covid as a real illness with a physiological basis.
“I’m just disgusted,” said long-covid patient Hayes. “You wouldn’t tell somebody with diabetes to breathe through it.”
Chimére L. Sweeney, director and founder of the Black Long Covid Experience, said she’s even taken breaks from seeking treatment after getting fed up with being told that her symptoms were due to her diet or mental health.
“You’re at the whim of somebody who may not even understand the spectrum of long covid,” Sweeney said.
Insurance Battles Over Experimental Treatments
Since there are still no long-covid treatments approved by the Food and Drug Administration, anything a physician prescribes is classified as either experimental — for unproven treatments — or an off-label use of a drug approved for other conditions. This means patients can struggle to get insurance to cover prescriptions.
Michael Brode, medical director for UT Health Austin’s Post-COVID-19 Program — said he writes many appeal letters. And some people pay for their own treatment.
For example, intravenous immunoglobulin therapy, low-dose naltrexone, and hyperbaric oxygen therapy are all promising treatments, he said.
For hyperbaric oxygen, two small, randomized controlled studies show improvements for the chronic fatigue and brain fog that often plague long-covid patients. The theory is that higher oxygen concentration and increased air pressure can help heal tissues that were damaged during a covid infection.
However, the out-of-pocket cost for a series of sessions in a hyperbaric chamber can run as much as $8,000, Brode said.
“Am I going to look a patient in the eye and say, ‘You need to spend that money for an unproven treatment’?” he said. “I don’t want to hype up a treatment that is still experimental. But I also don’t want to hide it.”
There’s a host of pharmaceuticals that have promising off-label uses for long covid, said microbiologist Amy Proal, president and chief scientific officer at the Massachusetts-based PolyBio Research Foundation. For instance, she’s collaborating on a clinical study that repurposes two HIV drugs to treat long covid.
Proal said research on treatments can move forward based on what’s already understood about the disease. For instance, she said that scientists have evidence — partly due to RECOVER research — that some patients continue to harbor small amounts of viral material after a covid infection. She has not received RECOVER funds but is researching antivirals.
But to vet a range of possible treatments for the millions suffering now — and to develop new drugs specifically targeting long covid — clinical trials are needed. And that requires money.
Hayes said she would definitely volunteer for an experimental drug trial. For now, though, “in order to not be absolutely miserable,” she said she focuses on what she can do, like having dinner with her http://family.at/ the same time, Hayes doesn’t want to spend the rest of her life on a beige couch.
RECOVER’s deadline to submit research proposals for potential long-covid treatments is Feb. 1.
This article is from a partnership that includes NPR and KFF Health News.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News’ free Morning Briefing.
This article first appeared on KFF Health News and is republished here under a Creative Commons license.
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