Health https://www.pilotonline.com The Virginian-Pilot: Your source for Virginia breaking news, sports, business, entertainment, weather and traffic Tue, 17 Sep 2024 21:33:30 +0000 en-US hourly 30 https://wordpress.org/?v=6.6.2 https://www.pilotonline.com/wp-content/uploads/2023/05/POfavicon.png?w=32 Health https://www.pilotonline.com 32 32 219665222 How to stick to your health goals when life gets crazy https://www.pilotonline.com/2024/09/17/how-to-stick-to-your-health-goals-when-life-gets-crazy/ Tue, 17 Sep 2024 21:08:30 +0000 https://www.pilotonline.com/?p=7372891&preview=true&preview_id=7372891 Donna Mansour

When life starts to get busy it can be easy to fall into bad health habits without even noticing. You might eat out a little more, skip a workout, have an extra glass of wine with dinner or not get enough sleep. At times like these, it can be handy to have an arsenal of practical tips on hand to help you stick to your health goals and get you back to living your best life.

Sticking to your health goals during busy times like this can help prevent you from getting sick or rundown, keep you feeling great both emotionally and physically and keep your energy levels up and stress levels down. The following are some simple and easy-to-implement tips to help you stick to your health goals when everything seems impossible.

Practice healthy habits first thing in the morning

Starting with your healthy habits first thing in the morning will set the tone for the rest of the day. By starting off on a good note, and ticking off some of your healthy goals early on, you will be more likely to stick to the rest of the goals as the day gets busier. If you plan on fitting in a workout or a walk then set your alarm a little earlier in the morning so you can get it out of the way as soon as you wake up.

After your workout, choose a healthy breakfast option. Things like smoothies or grab-n-go breakfast parfaits are great to prep ahead of time if you know you are going to be in a rush. They make it so easy to jam lots of goodness into one meal. You can even pre-pack smoothie bags and have them stored in the freezer ready to blend so it won’t matter how busy you are, you can still fill your body with nutritious food.

Stay hydrated

Fill your water bottle first thing in the morning to reach your water goals for the day. If you are going to be out of the house for a while, bring your water bottle with you. If you don’t have a good reusable water bottle, invest in one. This will make it easier to take water with you on the go.

Staying hydrated can help you feel less sleepy and less hungry, and can also help make you feel better overall throughout the day. A great way to stay hydrated is by making up a couple of batches of lemon chia water and having them ready to grab and sip in the morning. This has the bonus of keeping you fuller for longer. Another way is to make up a pot of your favorite herbal tea to sip at your desk while you work.

Schedule healthy lifestyle habits into your day

Schedule your meals into your day to help make sure you are allowing yourself the chance to eat a well-balanced and healthy diet. If you work your day around these times, you can avoid the drive-thru and make it easier to stick to a healthy diet.

If you want to exercise each day, book a class or a block of time for walking or running into your schedule. This way you will be less likely to skip it even on a busy day. Guilt is a powerful thing and you will know you are letting yourself down if you don’t stick with the commitment.

You can have the schedule on your phone so you can access it at all times, or if you prefer a paper planner and the satisfaction of ticking things off as you get them done then pick a good one and make sure you use it. The key is to have your schedule accessible so that you don’t just schedule it and forget it.

Plan and prepare meals ahead of time

Meal planning and prepping will make it just as easy to grab something nutritious as it would be to hit the drive-thru. If you need to, prepare a week or even a month ahead if you can. This will make eating a healthy diet and maintaining a healthy lifestyle a breeze.

There are several apps out there that can help with meal planning. They will usually have an option to write the grocery list and some can even help with doing an online grocery order to be delivered, which is such a time saver and stops all those treats from being thrown into the cart when you are doing the shop yourself.

You might prefer a good old paper and pen meal plan. Rip recipes from magazines or print off recipes you find online during the week, and keep them stored in an inexpensive ring binder, then pour yourself a cup of tea and decide what you want to eat for the week.

Spend some time on the weekend or on a day off preparing some meals or snacks that can then be eaten on busy days. This can be as simple as making a double batch of granola for breakfasts, some freezer-friendly mini muffins for lunchboxes or casseroles that can be popped into the slow cooker for dinner.

Get moving when you can

You may not always have the time to fit in a workout multiple times per week, but even on days you can’t get to the gym, you can increase your step count by making a few simple changes. Small changes like these can really add up.

You can easily add more movement to your regular daily activities by adding some slight modifications to your routine. For instance, while out running errands, park your car a bit further away than usual, take the stairs instead of the elevator or get off the bus a stop or two earlier.

If you find yourself getting tired or losing focus at work, then stop what you are doing and take a quick walk around the block. Motivate yourself by getting a step tracker and setting a goal each day. Set yourself reminders to get up and move if you have to.

Getting up and going for a walk can be great for mental clarity and focus. It also means you are getting in some extra steps without even trying.

Make time for sleep

If you want to get more done in your day by getting up early, this is going to mean that you will need to head to bed a little bit earlier. Make time for sleep by scheduling a bedtime for yourself and setting an alarm on your phone so you stick to that bedtime. Similarly, set an alarm for the morning that allows you the time you need to get everything done before the busy day starts.

Wrapping up

No matter how busy life gets, it is important to take the time to implement healthy habits. Even if you’re short on time, you can still make small tweaks to your routine to make sure you are practicing healthy lifestyle habits. Getting up earlier, filling your water bottle, planning and prepping some meals for the week and getting your body moving will all help to keep you on the right track and lower the stress and chaos a busy day can bring.

Donna Mansour is a recipe developer, food photographer and the creator of the food blog Whole Food Bellies. She is obsessed with kitchen gadgets and has them all. In her free time, she loves hiking, reading and spending time with her three kids and sausage dog Odie.

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In Montana, 911 calls reveal impact of heat waves on rural seniors https://www.pilotonline.com/2024/09/17/rural-seniors-impacted-by-heat-waves/ Tue, 17 Sep 2024 18:44:44 +0000 https://www.pilotonline.com/?p=7372433&preview=true&preview_id=7372433 By Aaron Bolton, MTPR and KFF Health News

Missoula is one of Montana’s largest cities but is surrounded by rural mountain communities where cattle ranching is king. Despite the latitude and altitude, in recent years this region has experienced punishing summer heat waves.

It has been difficult for residents to adapt to the warming climate and new seasonal swings. Many don’t have air conditioning and are unprepared for the new pattern of daytime temperatures hovering in the 90s — for days or even weeks on end. Dehydration, heat exhaustion, heatstroke, and abnormalities in heart rate and blood pressure are among the many health complications that can develop from excessive exposure to high temperatures.

It can happen anywhere and to anyone, said Missoula firefighter Andrew Drobeck. He remembers a recent 911 call. The temperature that day had risen to over 90 degrees and a worker at a local dollar store had fainted. “She’s sensitive to the heat. Their AC wasn’t working super good,” Drobeck said. “I guess they only get a 15-minute break.”

Drobeck said many of the heat calls his department receives are from seniors who struggle to stay cool inside their older homes. Montana’s population is among the oldest in the country. About 1 in 4 residents are over 60. Those over 65 are especially vulnerable to heat-related illness, according to the Centers for Disease Control and Prevention. As people age, their bodies don’t acclimate to heat as well as they did when they were younger, including not producing as much sweat.

In July, a heat dome that settled over much of the western U.S. baked the region and shattered two types of temperature records: daily highs, and number of consecutive days over 90 degrees. Although the Northwest, including western Montana, is typically cooler, the region experienced record-breaking heat this summer.

Emergency responders like Drobeck have noticed. Drobeck says 911 calls during heat waves have ticked up over the last few summers. But Missoula County officials wanted to know more: They wanted better data on the residents who were calling and the communities that had been hardest hit by the heat. So the county teamed up with researchers at the University of Montana to comb through the data and create a map of 911 calls during heat waves.

The team paired call data from 2020 with census data to see who lived in the areas generating high rates of emergency calls when it was hot. The analysis found that for every 1 degree Celsius increase in the average daily temperature, 911 calls increased by 1%, according to researcher Christina Barsky, who co-authored the study.

Though that may sound like a small increase, Barsky explained that a 5-degree jump in the daily average temperature can prompt hundreds of additional calls to 911 over the course of a month. Those call loads can be taxing on ambulance crews and local hospitals.

The Missoula study also found that some of the highest rates of emergency calls during extreme heat events came from rural areas, outside Missoula’s urban core. That shows that rural communities are struggling with heat, even if they get less media attention, Barsky said. “What about those people, right? What about those places that are experiencing heat at a rate that we’ve never been prepared for?” she said.

Barsky’s work showed that communities with more residents over 65 tend to generate more 911 calls during heat waves. That could be one reason so many 911 calls are coming from rural residents in Missoula County: Barsky said people living in Montana’s countryside and its small towns tend to be older and more vulnerable to serious heat-related illness.

And aging in rural communities can pose extra problems during heat waves. Even if it cools off at night, an older person living without air conditioning might not be able to cope with hours of high temperatures inside their home during the day. It’s not uncommon for rural residents to have to drive an hour or more to reach a library that might have air conditioning, a community center with a cooling-off room, or medical care. Such isolation and scattered resources are not unique to Montana. “I grew up in the Upper Peninsula of Michigan,” Barsky said. “There are no air-conditioned spaces in at least 50 miles. The hospital is 100 miles away.”

Heat research like the Missoula study has focused mostly on large cities, which are often hotter than outlying areas, due to the “heat island” effect. This phenomenon explains why cities tend to get hotter during the day and cool off less at night: It’s because pavement, buildings, and other structures absorb and retain heat. Urban residents may experience higher temperatures during the day and get less relief at night.

By contrast, researchers are only just beginning to investigate and understand the impacts of heat waves in rural areas. The impacts of extreme heat on rural communities have largely been ignored, said Elizabeth Doran, an environmental engineering professor at the University of Vermont. Doran is leading an ongoing study in Vermont that is revealing that towns as small as 5,000 people can stay hotter at night than surrounding rural areas due to heat radiating off hot pavement. “If we as a society are only focused on large urban centers, we’re missing a huge portion of the population and our strategies are going to be limiting in how effective they can be,” Doran said.

Brock Slabach, with the National Rural Health Association, agrees that rural residents desperately need help adapting to extreme heat. They need support installing air conditioning or getting to air-conditioned places to cool off during the day. Many rural residents have mobility issues or don’t drive much due to age or disability. And because they often have to travel farther to access health care services, extra delays in care during a heat-related emergency could lead to more severe health outcomes. “It’s not unreasonable at all to suggest that people will be harmed from not having access to those kinds of services,” he said.

Helping rural populations adapt will be a challenge. People in rural places need help where they live, inside their homes, said Adriane Beck, director of Missoula County’s Office of Emergency Management. Starting a cooling center in a small community may help people living in town, but it’s unrealistic to expect people to drive an hour or more to cool off. Beck said the Missoula County Disaster and Emergency Services Department plans to use data from the 911 study to better understand why people are calling in the first place.

In the coming years, the department plans to talk directly with people living in rural communities about what they need to adapt to rising temperatures. “It might be as simple as knocking on their door and saying, ‘Would you benefit from an air conditioner? How can we connect you with resources to make that happen?’” Beck said.

But that won’t be possible for every rural household because there simply isn’t enough money at the county and state level to pay for that many air-conditioning units, Missoula County officials said. That’s why the county wants to plan ahead for heat waves and have specific protocols for contacting and assisting vulnerable rural residents.

“Ideally we’d be in a situation where maybe we have community paramedics that can be deployed into those areas when we know that these events are going to happen so they can check on them and avoid that hospital admission,” Beck explained. She added that preventing heat-related hospitalizations among rural residents can ultimately save lives.

This article is from a partnership that includes MTPRNPR, 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 of KFF — the independent source for health policy research, polling and journalism.

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

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States are making it easier for physician assistants to work across state lines https://www.pilotonline.com/2024/09/17/physician-assistants-are-working-across-state-lines/ Tue, 17 Sep 2024 18:42:47 +0000 https://www.pilotonline.com/?p=7372422&preview=true&preview_id=7372422 By Shalina Chatlani, Stateline.org

Mercedes Dodge was raised by first-generation immigrant parents from Peru in a modest home in a rural part of southeastern Texas, where there weren’t many health care providers. Sometimes they had to travel to Houston, over an hour and a half away, to get basic health care.

Partly because of that experience, Dodge became a physician assistant. Since 2008, she has provided psychiatric and primary care services to adults and children, many of whom come from communities like hers.

Dodge, who now lives in Austin, Texas, has built up a loyal base of patients, including many who are part of military families. But when any of them move out of Texas, she has to stop treating them, even via telehealth, unless she gets a license to practice in that state.

“I do my best and collaborate with them, but they already feel alone,” Dodge told Stateline. “I wonder, ‘Why can’t I be the glue? Why can’t I step over state lines and provide the care that they deserve?’”

Mercedes Dodge, a physician assistant in Austin, Tex.
Mercedes Dodge, a physician assistant in Austin, Tex. Dodge holds PA licenses in multiple states so she can continue to see patients who move away from Texas. More states are joining a multistate compact that allows PAs to practice across state lines. (Courtesy of Mercedes Dodge/TNS)

Physician assistants, commonly known as PAs, are licensed clinicians who have a master’s degree and can practice in a range of specialties. Their three years of training typically includes 3,000 hours of direct patient care, and they are an increasingly critical part of the health care workforce, which in many states isn’t keeping pace with a growing and aging population.

By 2028, the nation as a whole will be short some 100,000 critical health care workers — doctors, nurses and home health aides — according to a new report from Mercer, a management consulting firm.

The looming shortage is one reason why 13 states have joined the PA Licensure Compact, a multistate agreement that allows PAs to practice in any participating state, without having to get an additional license.

DelawareUtah, and Wisconsin enacted the legislation in 2023.

ColoradoMaineMinnesotaNebraskaOklahomaTennesseeVirginiaWashington and West Virginia followed suit this year. Ohio became the latest state to enact it in July.

The PA compact is one of several that have emerged over the past several years, especially since the expansion of telehealth services during the COVID-19 pandemic. There are similar compacts for doctors, nurses, occupational therapists and social workers.

One challenge has been completing the background checks required for providers who want to practice under the compacts. For example, Pennsylvania’s participation in the nursing and medical licensure compacts was delayed as the FBI denied the state access to its fingerprint database. They later reached an agreement on how to move forward.

The PA compact grants a “privilege to practice,” allowing PAs to practice in participating states without getting an additional license. The nursing compact gives nurses a multistate license, while the physician licensure compact just expedites the licensing process.

Some large states, such as California and New York, don’t participate in compacts for doctors, nurses, social workers or PAs. Some state lawmakers in those states say joining interstate compacts would reduce the quality of their states’ health care workforces, because other states require lower standards of education and training.

“We are proud that New York’s high standards have resulted in our state being an international destination in health care,” New York Democratic Assemblymember Deborah Glick wrote in an op-ed last year for the Times Union newspaper in Albany. “While it’s possible that it may make sense at some point for New York to join a licensure compact, we should pause before we allow a quick fix to lower New York’s standards.”

In other states, such as Texas, doctors who have succeeded in limiting the “scope of practice” of Texas PAs oppose the compact because they believe it might allow out-of-state PAs to go beyond those limits for their patients who reside in Texas. The American Medical Association and its state affiliates argue that allowing PAs to provide care traditionally provided by physicians puts patients at risk.

Dr. G. Ray Callas, president of the Texas Medical Association, said he values the role that physician assistants play in the health care system, but that his organization objects to any measure that might “give PAs authority to do more in health care than they are trained to do.”

“TMA is not opposed to appropriate, expedited licensure, but we do oppose these compacts when they expand scope of practice and create a patient safety issue, lowering the standard of care in Texas,” Callas said in a statement.

Supporters of the compact say that fear is unfounded, and that the agreement has no effect on state scope of practice rules. The model legislation for the compact specifies that PAs who treat patients in another state can only do so “under the Remote State’s laws and regulations.”

Last year, the Texas legislature considered legislation to join the PA compact, but it died in the state Senate.

Monica Ward, president of the Texas Academy of Physician Assistants, said her group will keep pushing for the bill.

“In the rural areas of Texas, there is absolutely a need and a shortage of health care providers,” Ward said. “We’re surrounded by multiple states, so it’s nice to be able to reduce those administrative burdens, paperwork and possibly fees for those that are looking to work in Texas.”

It will take 18 to 24 months for the compact to become fully operational and for PAs to apply for the privilege to practice in other areas. The compact commission also needs to create a data system to keep track of licenses.

This model of licensure may not have worked even five years ago, said Tennessee Republican state Rep. Jeremy Faison, who sponsored his state’s compact legislation.

“It would have had major pushback and people would have asked, ‘What are you trying to do? We like to control what we’re doing in our state,’” said Faison. “But because we live in a global society and people move around so much more than ever before, I think the average person has embraced this.”

Faison told Stateline that for states such as Tennessee, which borders eight states, joining the compact makes economic sense because it will encourage people to move to the state.

Financial stability was 32-year-old Aneil Prasad’s motivation for getting a compact nursing license. He moved from New Orleans to Asheville, North Carolina, last year.

“It allows people to seek out better-paying jobs and move themselves ahead, buy houses and have better health and education and all that,” Prasad said. “And then the less competitive places are forced to raise their wages in order to attract people.”

After moving from Louisiana to North Carolina with his multistate license, Prasad said his wage increased from $21 an hour to $36 an hour. He notes that while the multistate license for nurses costs a bit more than a regular license, it would be much more expensive for him to apply for a new license in every state.

Since Texas hasn’t joined the PA compact, Dodge maintains active licenses in her home state as well as Alaska, California, Florida, New Mexico and Washington. She said the process to get them was expensive and time-consuming. Licenses can cost upward of $500 and can take three to nine months to obtain. Dodge said it’s been worth the trouble to help her patients, but she would appreciate an easier pathway.

“I got all these state licenses to follow my patients,” she said. “So when the PA compact license gets enacted in Texas, I hope it’s going to help me continue following my patients and I’ll be the glue that they need.”


Stateline is part of States Newsroom, a national nonprofit news organization focused on state policy.

©2024 States Newsroom. Visit at stateline.org. Distributed by Tribune Content Agency, LLC.

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7372422 2024-09-17T14:42:47+00:00 2024-09-17T14:43:22+00:00
Pfizer drug helped cancer patients regain weight, study shows https://www.pilotonline.com/2024/09/16/pfizer-drug-helped-cancer-patients-regain-weight-study-shows/ Mon, 16 Sep 2024 19:42:31 +0000 https://www.pilotonline.com/?p=7370819&preview=true&preview_id=7370819 Madison Muller | (TNS) Bloomberg News

Pfizer Inc.’s experimental drug for cancer weight loss was shown to help patients regain weight in a mid-stage study, offering fresh promise for treating the dangerous muscle-wasting condition.

In cancer patients, a syndrome called cachexia causes changes in metabolism and appetite. It can lead to the loss of critical skeletal muscle and fat that weakens the body and, in some cases, can make cancer treatments less effective. Studies suggest that as much as 30% of all cancer deaths are caused by cachexia and about 80% of patients with advanced stage cancers are affected by the condition. There are currently no drugs approved to treat it.

Pfizer’s drug, called ponsegromab, is a monoclonal antibody that blocks GDF-15, a protein expressed when the body is under extreme stress. High GDF-15 levels in cancer patients are thought to be associated with loss of appetite and nausea, which led Pfizer’s scientists to hypothesize that blocking the protein’s expression could prevent the onset of cachexia.

The drug was discovered in-house at Pfizer, which has been looking to cancer drugs to drive its next growth chapter. Last year, the company bought cancer drugmaker Seagen Inc. for $43 billion, and investors have been hungry for positive news as its COVID-19 vaccine sales continue to dwindle.

Pfizer enrolled 187 patients with cancer and high levels of GDF-15 in a Phase 2 study that tested ponsegromab’s effect on body weight compared with a placebo. Patients in the trial had non-small cell lung cancer, pancreatic cancer or colorectal cancer, and about 75% of them had progressed to stage 4.

At the highest 400 milligram dose, patients regained about 5.6% of their body weight in 12 weeks, according to results published Saturday in the New England Journal of Medicine. Those patients also saw improvements in appetite, physical activity levels and skeletal muscle, according to the findings, which will be presented simultaneously at the European Society for Medical Oncology conference in Barcelona.

Charlotte Allerton, head of discovery and early development at Pfizer, said in an interview that the company hopes ponsegromab will enable weight gain that allows patients to tolerate more treatment and “be more active, which of course will improve their overall health.”

Pfizer is discussing development plans with regulatory agencies and aims to begin registration-enabling studies in 2025. The company is also testing ponsegromab in patients with heart failure and high levels of GDF-15. Allerton said the company is exploring other conditions linked to elevated GDF-15, such as chronic kidney disease.

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©2024 Bloomberg L.P. Visit bloomberg.com. Distributed by Tribune Content Agency, LLC.

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7370819 2024-09-16T15:42:31+00:00 2024-09-16T15:45:32+00:00
A mysterious syndrome that paralyzed kids seems to have disappeared. But why? https://www.pilotonline.com/2024/09/16/afm-acute-flaccid-myelitis-paralysis-syndrome/ Mon, 16 Sep 2024 19:26:29 +0000 https://www.pilotonline.com/?p=7370765&preview=true&preview_id=7370765 A syndrome that paralyzed children in Colorado and across the nation seems to have disappeared almost as mysteriously as it arrived, leaving scientists to figure out what happened and survivors to adapt as they grow up.

Doctors first identified cases of unexplained muscle weakness and limb paralysis in children, which they called acute flaccid myelitis, or AFM, in 2014 — though in retrospect, sporadic cases showed up as early as 2009, said Dr. Kevin Messacar, an infectious disease specialist at Children’s Hospital Colorado. The hospital was one of the first to raise alarms that something unusual was going on.

Nationwide, cases spiked again in 2016 and 2018, with only a handful recorded in odd-numbered years, according to data from the Centers for Disease Control and Prevention.

But the pattern broke in 2020, possibly because measures to combat COVID-19 kept kids from getting other viruses, and while the most likely culprit virus returned in 2022, the expected cases of paralysis didn’t.

Last year, the CDC recorded 18 confirmed cases of AFM, down from a high of 238 in 2018. Colorado has ranged from zero to four cases each year since 2018, when the state recorded 17.

The evidence linking the syndrome to infection by the common respiratory bug enterovirus D68 has only grown, raising questions about whether the virus itself changed, kids’ immune systems are responding differently, or some other environmental factor tipped the balance, Messacar said.

Typically, EV-D68 causes colds, but for unknown reasons, it infected the spinal cord and caused muscle weakness and paralysis in a small percentage of kids.

“It may not be as straightforward as one of those three factors,” with multiple changes contributing, he said.

No cure exists for AFM, and children who had it vary in how much they’ve recovered.

Lydia Pilarowski, a 16-year-old who lives in Denver, had one of the earlier known cases in August 2014.

She and her brother both had what seemed like ordinary colds, but Lydia remained lethargic after her brother recovered. Then their mother, pediatrician Dr. Sarah Lacey, started noticing Lydia couldn’t do things she did before, like turning while riding her bike or playing the piano with her left hand.

“That’s suddenly when it dawned on me that something was wrong,” Lacey said.

Certain muscles in her upper arm no longer obeyed her brain’s commands to move, so Lydia has worked with occupational therapists over the years to strengthen the other muscles and find creative ways to do the things she wants to.

For example, when she was skiing competitively, Lydia noticed her left arm was dragging in the wind and slowing her down. She initially wasn’t sure how people would react to her skiing with her arm in a sling — a clear marker of an otherwise invisible disability — but it improved her times and was freeing in its own way, she said.

“Instead of trying to work through something I can never work through, I work around it and work with it to do the things I love,” Lydia said.

Lydia Pilarowski was one of the first cohort of kids with acute flaccid myelitis back in 2014 when it paralyzed some of the muscles in her upper left arm. Lydia sits for a portrait at her home in Denver on Sept. 12, 2024. (Photo by RJ Sangosti/The Denver Post)
Lydia Pilarowski was one of the first cohort of kids in Colorado with acute flaccid myelitis in 2014, when it paralyzed some of the muscles in her upper left arm. Lydia sits for a portrait at her home in Denver on Sept. 12, 2024. (Photo by RJ Sangosti/The Denver Post)

The process of learning how to live with the after-effects of AFM never really ends, Lacey said.

As Lydia tries more things, they confront new challenges, such as how to put a suitcase in a plane’s overhead bin when one arm won’t go over her head. They also recently learned that the syndrome had subtle effects on Lydia’s diaphragm, contributing to shortness of breath that Lacey initially thought more cardiovascular training would resolve.

“There are so many things we don’t know,” Lydia said.

While AFM seems to have gone away as an immediate public health concern for the moment, researchers are still trying to understand it, said Dr. Carlos Pardo, a professor of neurology and pathology at John Hopkins University’s School of Medicine.

Right now, one of the top theories is that a different variant of EV-D68 emerged in the early 2010s, causing paralysis in rare cases, he said.

A research lab on the University of Colorado’s Anschutz Medical Campus is working on comparing samples of EV-D68 that cause paralysis in at least some cases and others that don’t, Messacar said.

They’ve found only a small number of mutations between the two variants, and are studying whether any of those could have made the critical difference. If they do prove important, that information could help detect if more-dangerous variants return or even lead to new vaccines, he said.

Another possibility is that EV-D68 could always cause paralysis in rare cases. Other syndromes cause the same symptoms, so it could be that doctors simply didn’t pick up that a virus might be the root cause, Pardo said.

The syndrome’s seeming disappearance also could have at least two possible explanations, Pardo said. Maybe it couldn’t hang on during the early years of the pandemic, when people weren’t spreading it, and different variants replaced it. Or, maybe enough people now have immunity from a large wave of EV-D68 that the number who are susceptible to that variant dropped dramatically, he said.

While scientists still don’t know everything they would like to about AFM, they’ve made significant progress since 2014, when they didn’t even have a test that could detect whether the virus had gotten into someone’s spinal fluid, Messacar said. An antibody-based treatment for EV-D68 is going through trials, and more than one possible vaccine is approaching human testing, he said.

Lydia said she hopes researchers can learn more about what caused the wave of AFM cases, both for her own understanding and to prevent something similar from happening again. But that the uncertainty is something she’s had to “make peace” with, using the same skills that help her adapt to each new challenge that arises from her disability.

“I think growing up, you have these preconceived notions about what your life will look like,” she said. “For me, it’s been about embracing the unknown.”

Lydia Pilarowski was one of the first cohort of kids with acute flaccid myelitis back in 2014 when it paralyzed some of the muscles in her upper left arm. Lydia sits for a portrait at her home in Denver on Sept. 12, 2024. (Photo by RJ Sangosti/The Denver Post)
Lydia Pilarowski was one of the first cohort of kids in Colorado with acute flaccid myelitis in 2014, when it paralyzed some of the muscles in her upper left arm. Lydia sits for a portrait at her home in Denver on Sept. 12, 2024. (Photo by RJ Sangosti/The Denver Post)

 

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Starving Artist and Paint Pink founder’s dying wish: Her nonprofit continues to help other cancer patients https://www.pilotonline.com/2024/09/16/starving-artist-and-paint-pink-founders-dying-wish-her-nonprofit-continues-to-help-other-cancer-patients/ Mon, 16 Sep 2024 11:32:21 +0000 https://www.pilotonline.com/?p=7365825 Editor’s note: The interviews for this story were conducted before Kim Keene died on Sept. 16.

If love alone could heal Kim Keene, she would be on her way to a cure. But that’s not to be, and as the well-known artist is in the final stages of cancer, she is thinking about helping others.

Keene, a Portsmouth native who resides on Willoughby Spit in Norfolk, started the nonprofit Paint Pink in June 2023 while undergoing breast cancer treatment. Now as the stage 4 metastatic cancer attacks her brain, liver and stomach, Keene’s dying wish is that the organization continue long after she is gone.

Nicole Carry, her partner of almost six years, and others assured her it will.

“Kim wants everyone to keep fighting breast cancer, to know how important it is in our community to help people while they’re fighting cancer and for Paint Pink to continue forever,” Carry said.

Paint Pink’s mission is to provide goods and services not covered by insurance, such as payment of bills, personal care items, estate planning, yard work, house cleaning and meal delivery, to cancer patients in Hampton Roads so they can focus on their health.

After her initial breast cancer diagnosis in 2017, Keene realized how much support she had from friends and family during her treatment and wanted to pay it forward to help other locals living with cancer. She underwent a double mastectomy, followed by five years of clean scans before the cancer returned in 2022.

Paint Pink is a testament to Keene’s inspiring selflessness, said Stephanie Clark, board treasurer for the nonprofit. Having lost her mother to breast cancer in 2008, Clark said the organization’s mission resonated deeply with her.

“I met Kim through a mutual friend about a year ago, and she’s one of those people you instantly want to befriend,” Clark said. “She has a genuine, magnetic presence and a smile that radiates kindness.”

Kim Keene started the nonprofit Paint Pink in 2023 to help others going through cancer treatment in Hampton Roads. (Courtesy of Nicole Carry)
Nicole Carry
Kim Keene started the nonprofit Paint Pink in 2023 to help others going through cancer treatment in Hampton Roads. (Courtesy of Nicole Carry)

Jo Ann Hughes, a Norfolk police officer who serves as Paint Pink’s board vice president, said she knows the nonprofit means everything to Keene and promised her it will continue.

“Kim’s passion is painting and her heart is Paint Pink,” Hughes said.

Fellow artist and longtime friend Laura Henderson shares a space with Keene at d’Art Center. They both specialize in painting acrylic abstracts inspired by nature. Keene previously owned Starving Artist Cafe on Colley Avenue in Norfolk.

“Kim is a rare and amazing individual,” Henderson said. “She has this personality of wanting to help other people and a smile that just lights up a room.”

The two opened The Gallery at Paint Pink in Ghent in early August. They had one show together before Keene fell ill again. A portion of all art sales at the gallery benefit the nonprofit.

Paint Pink has several events planned during Breast Cancer Awareness Month in October: a golf tournament on Oct. 3 at Cypress Point Country Club in Virginia Beach, Paint the Block Pink on Oct. 5 at the Starving Artist Cafe in Norfolk, Kim’s Pink Night Out on Oct. 11 at MJ’s Tavern in Norfolk and a brunch and silent auction on Oct. 27 at d’Art Center.

The organization also launched a campaign called Kim’s Krusade to help raise funding for Paint Pink.

“It’s in her name, but it’s all for other people,” Carry said. “We call it Kim’s Krusade because this is her wish — to help others.”

The goal — albeit a lofty one, Hughes said — is to raise $100,000 by the end of the year.

“I think we can reach it,” Hughes said. “She’s touched so many people in this community and is so full of sunshine and light.”

“She has got so many people who just love her,” Henderson added.

For more information about Paint Pink, visit paintpinkinc.org.

Sandra J. Pennecke, 757-652-5836, sandra.pennecke@pilotonline.com

The space in her home on Willoughby Spit where Kim Keene creates her art overlooking the Chesapeake Bay. (Sandra J. Pennecke/Staff)
The space in her home on Willoughby Spit where Kim Keene creates her art overlooking the Chesapeake Bay. (Sandra J. Pennecke/Staff)
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7365825 2024-09-16T07:32:21+00:00 2024-09-17T16:58:07+00:00
Shots Fired: Virginia Beach 9-year-old’s grueling recovery shows full impact of gun violence https://www.pilotonline.com/2024/09/15/shots-fired-virginia-beach-9-year-olds-grueling-recovery-shows-full-impact-of-gun-violence/ Sun, 15 Sep 2024 13:44:47 +0000 https://www.pilotonline.com/?p=7348213 Nine-year-old Landyn Davis will have a 40-caliber bullet in his brain for the rest of his life.

Six months after the Feb. 13 shooting that sent at least 26 rounds through the wall of his Virginia Beach townhouse, Landyn sat propped up on a couch still pocked with bullet holes and watched videos of himself posted last fall to his YouTube channel. His dad, Steven Davis, scooped a handful of popcorn into his son’s mouth as the boy in the videos windmilled his arms, tried dance moves and offered his pipe cleaner creations for sale.

The self-acknowledged baby of the family laughed and flashed his trademark smile that lights up brighter than the neon colors of his favorite video games.

But the emotion changed when the shooting came up. He described the feeling, with his mother’s permission for the language, as “pissed off.”

“I’m angry at the people who shoot,” he said haltingly, the words hard-won through months of physical therapy. “Don’t buy guns. Don’t sell guns.”

Last year, 21 children and adolescents died as a result of gunshot wounds in Hampton Roads, making up more than a third of the state’s child deaths due to gun violence, according to preliminary data from the Virginia Department of Health. Almost four times that number, 82, were treated for firearm injuries in Hampton Roads emergency departments.

In June, U.S. Surgeon General Dr. Vivek Murthy declared firearm violence to be a public health crisis, joining the American Academy of Pediatrics and other advocates who have considered it an epidemic for well over a decade. This push comes nearly 30 years after the 1996 Dickey Amendment froze any government funding for research into gun violence, six years after Congress allowed the Centers for Disease Control and Prevention to fund research as long as it did not advocate for gun control and four years after it became the leading cause of death for children in Virginia and nationally.

From June to August, The Virginian-Pilot followed Landyn and his family at community events, through grueling rehabilitation appointments and at home for an in-depth look at what it’s like for a child to live through gun violence.

___

‘We all looked’

The family’s front porch lightbulb camera captured the moments that changed their lives forever.

Landyn’s parents had left on a chilly, dark Tuesday evening with his 13-year-old brother, Breland Barksdale, for a wrestling team meeting. Landyn was supposed to go, but he’d been begging to play video games. Sister Briyah Barksdale, 15, was staying home, so his parents agreed to let him use the computer in their room on the second floor at the front of the house.

Just after 6 p.m., Briyah was sitting outside with her friends, listening to music. Video footage showed teenagers swaying and singing along before they suddenly looked around, then relaxed.

“I took off the headphones,” she said, “and then we heard the pop, and we all looked.”

It seemed like the sound had come from far away, so they weren’t worried — at first.

“The next thing you know, it was like you kind of saw the shots coming, but you really heard them too,” she said. “It’s like they whistle when they go by. So like, you could tell that the house was getting hit. We were getting hit.”

One bullet whizzed past her head. Another grazed her leg.

On video, the kids whirled away, then dropped out of sight as dozens of flashes erupted from the darkness. They ducked inside the house, and Briyah ran upstairs to check on Landyn.

“I didn’t see him in the chair. So I’m like, ‘Did he run in the bathroom?’ But then I didn’t know if they were going to start hitting at the house again, so I sort of army crawled on the floor,” she said.

That’s when she saw her brother lying still.

A photo of Landyn hangs on the refrigerator at his home in Virginia Beach on Tuesday, Aug. 13, 2024. Landyn was awarded student of the month at his elementary school for the month of February, the same month he was shot. (Kendall Warner / The Virginian-Pilot)
A photo of Landyn hangs on the refrigerator at his home in Virginia Beach on Tuesday, Aug. 13, 2024. Landyn was awarded student of the month at his elementary school for the month of February, the same month he was shot. (Kendall Warner / The Virginian-Pilot)

Landyn doesn’t like to talk about the shooting. He remembers it and its aftermath, although he seems to have forgotten some things over time and recalled others, said his mom, Emily Rigsby.

Something hit the computer screen, and as he lifted his headphones and turned to see what was going on, he was struck and collapsed to the floor, Rigsby said he later told her. A bullet had rammed through his skull, just behind his left ear.

Dr. Adam Conley, the pediatric neurosurgeon who operated on Landyn that night at Children’s Hospital of The King’s Daughters in Norfolk, said he has treated 40 to 50 children for gunshot wounds in his roughly 13-year career.

“The mortality of the gun violence is much higher,” Conley said. “We may see it less often, but when we do, the injuries uniformly are much more severe and life-altering — or life-ending.”

Landyn Davis works with Erin Douglass, a speech language pathologist, at Children's Hospital of the King's Daughters in Norfolk on Monday, July 22, 2024. After suffering a bullet wound to the head, Landyn has had to relearn how to eat, speak and swallow. (Kendall Warner / The Virginian-Pilot)
Landyn Davis works with Erin Douglass, a speech language pathologist, at Children’s Hospital of The King’s Daughters in Norfolk on Monday, July 22, 2024. After suffering a bullet wound to the head, Landyn has had to relearn how to eat, speak and swallow. (Kendall Warner / The Virginian-Pilot)

___

Grueling recovery and family stress

In Landyn’s case, he had an entry but not an exit wound, which is somewhat uncommon because usually the force of the bullet has enough energy to go through, Conley said. The bullet went through the protective membrane, called the dura, causing significant damage to the left side of Landyn’s brain, but then came to rest on the right side without nearly as much injury.

Objects in the brain don’t typically migrate to new locations, and removing the bullet, which was sterile due to the friction generated by the gunshot, would have destroyed healthy tissue.

“Quite honestly, that’s the last thing in the world I want to do, is to inflict any more brain damage on him,” Conley said. “You try to get a seal on the brain again and that allows the healing process to start.”

The hours immediately after the shooting are a blur for Landyn’s family. Rigsby said she didn’t sleep for the next four days while detectives repeatedly interviewed her, Briyah, and other family members. She recalled noticing mud on her husband’s shoes after he stopped by their house, only to realize it was their son’s blood.

“I’m just grateful he’s still here,” his mom said. “They didn’t think he was going to make it the first 96 hours. And once it got closer to the 96 hours, your heart starts pumping, because you’re like, oh my gosh, this is Day 3. Tomorrow’s Day 4. Is he going to make it?”

“You’re just worried to death,” she continued. “And they’re like, ‘If he does make it, he won’t be able to do anything.’ And I told them, ‘I don’t care. As long as I’ve got him, I would take him any way I could get him.’”

Landyn was released from the hospital after 91 days, just before his ninth birthday in May. He’s defied the odds, but every tiny improvement comes at a cost.

“Younger children have an increased potential for neurological recovery,” Conley said. “But you have the physical damage to the brain and how that relates to the immediate and long-lasting physical therapy. Then, of course, you have the emotional component. You have the stress it puts on the family.”

On a Monday morning not long after the Fourth of July, which left Landyn sleepless and anxious among the jarring noise of fireworks, he prepared for his regular slate of rehab: speech, occupational and physical therapy, four days a week.

At home, before being loaded into his mom’s SUV, he laughed and joked with his brother. He showed off his favorite plush toys, the fancy Lego sets his parents are saving in hopes he can one day assemble them himself, and his cat, Coco — short for Cocomelon — who sleeps by his head every night. But by the time he arrived in the waiting room, his head hung low and his eyes were distant.

For the next four hours, Landyn trained as hard as any athlete. In speech, he practiced controlling his head to swallow safely — one of his most important goals so he can get his feeding tube removed.

In occupational therapy, it took almost 30 minutes to strap Landyn into a functional electrical stimulation therapy bike, a machine that sends small pulses to muscles to improve their function. Then he spent another half-hour straining his arms and legs to improve grip strength, motor control and coordination — the areas most affected by the damage to his brain.

A screen on the bike showed a driving course, similar to a video game. But Landyn rarely looked at it, instead focusing with grim determination on the effort needed for the task.

“Do you remember what you could do when you left the hospital?” occupational therapist Kelly Allen asked Landyn.

“Wave,” he murmured.

“Yeah, I think you could wave,” she said. “What kinds of things can you do with your hands now? You can wave. You can pick things up.”

“Click buttons,” Landyn contributed.

“Oh, like on a game, like on a device? Or a remote, yeah,” she said.

Finally, it was time for physical therapy. After a short break, Kelly Crombie led Landyn through exercises designed to build the muscles he’ll need to sit on his own, stand and eventually walk.

The demanding exercise took its toll, leaving Landyn exhausted. And he would have to do it again the next day because he was in the wrong place at the wrong time when someone decided to fire a gun.

___

‘So many other Landyns out there’

Landyn isn’t the only child at CHKD recovering from a gunshot wound.

The health system, which provides the region’s only freestanding Level 1 pediatric trauma center, reported treating 22 patients under 18 for gunfire injuries last year. Of the 82 children and adolescents treated for firearm injuries in Hampton Roads emergency departments last year, 25 were under age 15, according to state data.

For many, physical rehab is only the beginning of the arduous journey to recovery, said Kristina Golden, a licensed clinical psychologist with CHKD’s Child Advocacy Center, where Landyn, Briyah and Breland all engage in therapy.

Being injured, suffering a “near miss” or simply witnessing gun violence all qualify as potentially traumatic experiences, she said, that can lead to post-traumatic stress disorder.

“There can be a significant psychological effect,” Golden said.

Symptoms can include difficulty sleeping, hypervigilance, flashbacks, feeling on edge, school absenteeism and risky behavior.

A landmark study published last November in Health Affairs, a health policy research journal, showed that in the year after a gunshot wound, child and adolescent survivors experienced a 117% increase in pain disorders, a 68% increase in psychiatric disorders and a 144% increase in substance use disorders. The study found their health care spending increased by an average of $34,884, with 95% of costs paid by insurers or parents’ employers.

The good news, Golden said, is that studies done on children who have experienced traumatic stress show that with evidence-based interventions, such as trauma-focused cognitive behavioral therapy, they can go on to lead normal lives and remain in remission from their symptoms.

“A lot of these symptoms, we can’t tell by looking at a child,” Golden said. “It’s so important to go to a professional, get that mental health evaluation, just to see how the child is doing because a lot of these things … we wouldn’t know if we don’t ask.”

Survivors aren’t the only casualties, according to the Health Affairs study. Parents of survivors experienced a roughly 30% increase in psychiatric disorders, and routine medical care for mothers and siblings decreased by 5% to 14%, which suggests families’ needs are pushed aside in the wake of a shooting, researchers said.

Helping families meet immediate needs is one of the most important and effective actions taken by a violence intervention program called Safer Futures, which CHKD started three years ago, said Kamron Blue, a medical social worker and the program’s coordinator.

Bags of groceries line a table in the small room on the ground floor of CHKD where Blue meets with families to talk about what kind of support they need to find a new normal, whether that’s going home with food or getting legal help in the aftermath of a shooting.

“I think gun violence is rooted in systemic issues, and poverty is one of those,” Blue said.

People become desperate when jobs are limited and scarce, health care and other services aren’t easily accessible and they struggle to afford housing, he said. Those factors don’t cause gun violence, but they affect people’s ability to take care of themselves and their families — and that contributes to it, Blue said. But the problem isn’t confined to any one type of neighborhood or lifestyle.

“We know that people who live in these marginalized communities are at increased risk,” he said. “But gun violence has happened everywhere. So while it may not happen to them in their neighborhood, I think every parent worries about getting a phone call from their school. Let’s look at Landyn. He was playing video games. And there’s so many other Landyns out there that were just doing kid things.”

___

Living a new normal

Rigsby and Davis attended the first hearing in the case against their son’s accused shooters in early August, even though they were alerted it would be continued. They’re determined to show up for every court date. Once the case moves past preliminary stages, Landyn will join them in the courtroom. His parents estimate he could be a teenager before it’s resolved.

“It’s unfair for the people who have to suffer,” said Davis, who holds a concealed carry permit and keeps his firearms locked up. “People don’t think about their actions. They want to be like the gangsters they see in the movies, or their favorite rappers.”

Police have said the violence was gang-related and someone standing outside their home was likely the target. Police told Rigsby that someone who went live on Facebook unintentionally showed their house number in the background, but was already gone by the time the shooters opened fire, she said. A Commonwealth Attorney’s Office spokesperson declined to confirm any details, citing the ongoing investigation.

It’s too easy for people to get their hands on guns, Rigsby said.

“They’re not thinking about the people or the children or families or anybody else that it affects,” Rigsby said.

A 10-year Army veteran, Rigsby thinks the barrage of bullets that invaded both floors of her home shows just how little many perpetrators of gun violence understand about firearms.

“A bullet doesn’t have a gender or an age or a race,” Rigsby said. “You never know where they’re going. You might think that it’s going to the intended target, but that’s not always the case. And it’s turned our lives completely upside down.”

Landyn’s dad returned to work driving trucks full-time in June. He spends weekends building Legos next to his son, an activity he regrets often turning down before the shooting because he was too tired.

“I had all the time in the world before Feb. 13 to build Legos with Landyn,” said Davis, who has also raised Briyah and Breland for the last 12 years along with his oldest, Brielle Davis, 16. “I almost lost that chance.”

He finds himself noticing things they’ve never done and making plans to do them, like watching the sun rise over the beach.

Landyn Davis cracks a smile while working with a speech language pathologist at Children's Hospital of The King's Daughters in Norfolk on Monday, July 22, 2024. (Kendall Warner / The Virginian-Pilot)
Landyn Davis cracks a smile while working with a speech language pathologist at Children’s Hospital of The King’s Daughters in Norfolk on Monday, July 22, 2024. (Kendall Warner / The Virginian-Pilot)

“He was 8 years old,” Davis said. “All that could have been over with.”

Last year, Landyn’s mom took three back-to-school pictures. This year, there was only one.

Breland was the only one who got on the bus this year. An outgoing, charming teen in constant motion, he still faces challenges at school — like the time he told his mom that at first he didn’t hear someone talking to him because he was wearing headphones, and then the kid said that’s how his brother got shot.

Briyah, who hasn’t returned to school since the shooting and participates in an online program, will continue to stay home and help her mom take care of her baby brother.

Instead of starting fourth grade with the classmates who sent him dozens of cards and Lego structures in the spring, Landyn will continue to work on learning to sit, stand and walk again.

While he can’t go back to school yet, one of his favorite teachers gifted him a keyboard and piano lessons at home. Almost 200 days after the shooting, Landyn beamed that trademark smile as his teacher placed his hands on the keys, and he played his first note.

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7348213 2024-09-15T09:44:47+00:00 2024-09-17T14:58:15+00:00
Desperate parents turn to magnetic therapy to help kids with autism. There’s little evidence https://www.pilotonline.com/2024/09/14/desperate-parents-turn-to-magnetic-therapy-to-help-kids-with-autism-theres-little-evidence/ Sat, 14 Sep 2024 13:15:58 +0000 https://www.pilotonline.com/?p=7368164&preview=true&preview_id=7368164 Corinne Purtill | Los Angeles Times (TNS)

LOS ANGELES — Thomas VanCott compares his son Jake’s experience with autism to life on a tightrope. Upset the delicate balance and Jake, 18, plunges into frustration, slapping himself and twisting his neck in seemingly painful ways.

Like many families with children on the autism spectrum, Jake’s parents sought treatments beyond traditional speech and behavioral therapies.

One that seemed promising was magnetic e-resonance therapy, or MERT, a magnetic brain stimulation therapy trademarked in 2016 by a Newport Beach-based company called Wave Neuroscience.

The company licensed MERT to private clinics across the country that offered it as a therapy for conditions including depression, PTSD and autism.

Those clinics described MERT as a noninvasive innovation that could improve an autistic child’s sleep, social skills and — most attractive to the VanCott family — speech. Jake is minimally verbal.

It was expensive — $9,000 — and not covered by insurance. “It’s too much for most things,” VanCott said, “but not for the potential of my child speaking.”

After raising money through GoFundMe, VanCott met with a doctor at a New Jersey clinic who described how MERT would reorganize Jake’s brain waves. VanCott does not have a scientific background, and the technical details went over his head. What he had was a severely disabled son he was desperate to help.

The doctor “seemed pretty confident. And his confidence gave me confidence,” VanCott said. “It made me think, tomorrow Jake’s gonna wake up and say a sentence.”

Autism diagnoses in children have risen steadily since 2000, in part due to increased awareness and screening. As the number of people living with autism has grown, so have alternative therapies promising to alleviate or even reverse its associated behaviors.

“There’s also a lot of pressure put on parents,” said Zoe Gross, a director at the Autistic Self Advocacy Network, a nonprofit group run by and for autistic adults. “People will be saying things like, ‘Time’s ticking, your kid’s missing milestones … you have to fix it now.’”

One therapy that often surfaces in Google searches, social media groups and word of mouth discussions is MERT, which is based on a brain stimulation therapy approved by the Food and Drug Administration for depression and obsessive-compulsive disorders.

Clinics offering MERT sell it as a “safe and effective treatment for autism” that yields “ miraculous results” for kids on the spectrum.

MERT providers first use EEG, a common brain scan, to assess patients. Wave's proprietary technology, photographed at a Newport Beach clinic, then determines which areas of the brain to target for treatment. (Jay L. Clendenin/Los Angeles Times/TNS)
MERT providers first use EEG, a common brain scan, to assess patients. Wave’s proprietary technology, photographed at a Newport Beach clinic, then determines which areas of the brain to target for treatment. (Jay L. Clendenin/Los Angeles Times/TNS)

Most compelling to many families is an oft-cited marketing claim that research has shown MERT to improve speech and eye contact in a majority of autistic patients, research that several clinics attributed to Wave.

The Times spoke to parents who said MERT caused positive, lasting changes in their autistic children’s sleep, communication and concentration.

Other parents told The Times they saw only minimal changes in their children’s behavior. Many, including Thomas VanCott, saw no changes at all. “It just did nothing,” VanCott said. And a few saw worrying behavioral regressions that persisted long after the therapy ended.

All remember being told by MERT providers that while results weren’t guaranteed, many patients saw positive results. When the dramatic changes they hoped for didn’t happen, these families left believing they were unlucky. Without quality data, it’s impossible to know if any of these outcomes are outliers or typical patient experiences.

Wave has not conducted any studies on whether its signature product works for autism. A Wave executive argued that the need for new autism therapies is strong enough to justify moving forward with commercial solutions before rock-solid evidence is available.

“Academics pointing towards insufficient evidence for clinical adoption may not represent a true reflection of clinical utility in a population where there are very few therapeutic options, great suffering, and a willingness of physicians and patients to seek innovative treatment choices with diligent clinical care and oversight,” said Erik Won, Wave’s chief medical officer.

For many parents, even a small possibility of a life-changing breakthrough is worth any price. Although some families have reported benefits from the treatment, no large scientific studies exist that show MERT is significantly better than a placebo, according to nine psychologists and neuroscientists with expertise in brain stimulation and autism.


MERT is Wave’s trademarked version of a therapy called transcranial magnetic stimulation. The product of decades of research, TMS is approved by the FDA to treat major depression, obsessive-compulsive disorder and cigarette addiction.

It is also used to treat conditions for which it is not FDA-approved, in what’s known as “off-label” prescribing. Off-label usage of drugs and devices is a common practice in medicine.

Clinics offering cash-pay TMS for a variety of off-label conditions, including autism, have proliferated in recent years. MERT in particular has become especially popular among families with autistic children.

Autism spectrum disorder is a complex neurological and developmental condition that manifests differently in nearly every individual who has it. Symptoms cluster around difficulties in communication, social interaction and sensory processing.

Many autistic people need minimal support to live, work and thrive independently, while others require intense daily care and are unable to express themselves verbally. There are few evidence-based interventions to alleviate its most profoundly disabling traits.

A MERT patient first sits for a 10-minute quantitative electroencephalogram, a noninvasive test that measures the brain’s electrical activity, and an electrocardiogram, which gauges electrical activity in the heart.

Results are then analyzed by Wave’s proprietary software. If its algorithm identifies “areas of the brain that are not functioning properly,” clinic providers will recommend a protocol of TMS-style treatments. In these sessions, the provider places a magnetic coil against the patient’s scalp that emits a gentle electromagnetic pulse. Sessions typically last about 30 minutes and are administered five days a week, for two to six weeks.

MERT providers first use EEG, a common brain scan, to assess patients. Wave's proprietary technology, photographed at a Newport Beach clinic, then determines which areas of the brain to target for treatment. (Jay L. Clendenin/Los Angeles Times/TNS)
MERT providers first use EEG, a common brain scan, to assess patients. Wave’s proprietary technology, photographed at a Newport Beach clinic, then determines which areas of the brain to target for treatment. (Jay L. Clendenin/Los Angeles Times/TNS)

Won, Wave’s president and chief medical officer, said the goal is “to help the brain function most efficiently as an organ. And the hypothesis was, if we improve the metabolic efficiency of the brain, would we see some changes in a variety of different medical conditions?

“As we sort of tested this, there was a realization: Wow, we can do something pretty special for autism,” he said.

A six-week course of MERT — the standard protocol Wave recommends for autistic patients — typically costs $9,000 to $12,000, families and clinic owners said, and is not covered by insurance.

MERT was originally developed as a therapy for post-traumatic stress disorder and traumatic brain injury. Since its inception in 2019, Wave has described military veterans as its primary patient demographic.

Wave is in Phase II of a clinical trial to test MERT for PTSD, Won said. The company has not conducted any clinical trials on autism.

“The strategic decision to focus on PTSD was largely dictated by market factors,” Won said. He added that his company is dedicated to helping those with autism and is working to obtain funding “for further studies and ultimately an FDA indication.”

Dr. Andrew Leuchter is the director of UCLA’s TMS Clinical and Research Service, which has provided FDA-approved and off-label treatments to more than 1,000 patients.

Given its solid safety profile and effectiveness at treating other complex brain-based disorders, Leuchter said that he and many other TMS clinicians believe the therapy could have benefits for conditions other than the few for which it is FDA-approved.

When a patient approaches the clinic seeking treatment for an off-label condition Leuchter believes could be helped by TMS, the psychiatrist reviews the case with his colleagues. If they decide to proceed, he explains to the patient that the efficacy of TMS for their condition isn’t proven, though there is reason to believe it is safe and effective.

But when parents call asking whether he can treat autistic characteristics such as sensory challenges, minimal speech or lack of eye contact, Leuchter says no.

“Off-label treatment can be just fine so long as there’s data to support this and the risks are low,” he said. For autism, he said, “the evidence base is not very strong. … And I don’t think that there is sufficient evidence to recommend the use of TMS for the treatment specifically of autism.”

Multiple researchers are currently examining whether TMS could improve certain symptoms of autism. But eight researchers interviewed for this article said there isn’t yet enough evidence to recommend TMS as an autism therapy, or to say with confidence that it works for that condition.

Lindsay Oberman, director of the Neurostimulation Research Program at the National Institute of Mental Health, published a paper last year summarizing the current state of research on TMS and autistic children. Nearly all published studies on the treatment to date have been very small, open-label (meaning both patients and providers knew what treatment they were receiving) or focused on a very specific subgroup, she and her co-authors wrote.

Without large, randomized controlled trials — the gold standard in medicine — “broad off-label use of these techniques in this population is not supported by currently available evidence,” the paper concluded.

Won acknowledged that the company has so far not pursued such research on MERT and autism.

“We owe the community some academically rigorous science,” he said. “This is not going to be a panacea. I don’t want to misrepresent anything to the parents who are making these difficult decisions. But for a subgroup, this is clearly something that’s leading to a response.”


Medical research moves far more slowly than most patients and their families would like, and many are willing to try experimental therapies long before researchers and regulators are ready to sign off on them.

“When you’re a parent of a child and you think that this can help, it’s like, FDA be damned, right?” VanCott said. “If I think it’s gonna help my kid, I want to do it.”

Wave’s provider directory now lists more than 60 U.S. licensees and an additional 18 internationally. More than 400,000 MERT sessions have been administered to more than 20,000 people, according to the company.

Won said Wave does not maintain comprehensive data on patients treated at licensee clinics. In an interview, he estimated that about half of these patients were seeking treatment for autism. He later said that 20% to 30% was a better estimate.

Although some clinic owners said they treat few autistic children, staffers at multiple facilities told The Times that most or all of their patients were autistic.

To pay for the procedure, families have used savings or turned to crowdfunding. Others placed the treatment on credit cards. Their experiences vary widely.

Though initially skeptical, Joo Flood booked a six-week course of treatment at a Dallas clinic in 2022 for her minimally verbal son Max, then almost 5. They returned for another round in May 2023.

Max now responds far more often to his name, makes regular eye contact and has an easier time following directions, his mother said.

“If I didn’t do the MERT, I’m not sure Max can be at this level,” she said.

Yestel Concepcion and her husband sought MERT for her stepson after hearing about it on a talk show.

The New Jersey couple scraped together savings and gratefully accepted donations from friends and family for the $10,000 cost. They spent nearly $5,000 more relocating the family to Maryland during the monthlong treatment.

Apart from an increase in the boy’s hyperactivity, the couple saw “no result whatsoever,” Concepcion said. The clinic suggested more sessions, at an additional cost. But their money and trust had run out.

Most parents who spoke to The Times about their children’s MERT treatments said the possibility of speech for their non- or minimally verbal children was the primary reason they pursued it, even if it meant taking on debt.


Until recently, more than a dozen MERT clinics around the country, under the headline “ Results that ‘Speak,’” cited an “internal double-blind randomized control trial” that had produced striking results: Two out of three patients with verbal and nonverbal communications difficulties “experienced improvement” after MERT. In the same trial, the ad copy read, 70% of patients who had trouble maintaining eye contact saw “improved eye contact behavior.”

Four clinics attributed those statistics to Wave.

According to Wave, the source of that claim is a small study of 28 patients that was conducted around 2017 by the Newport Brain Research Laboratory. It has not been published nor vetted by independent scientists. The study was among assets of the now-defunct laboratory that Wave purchased in 2019.

The only part of this work available to the public is an undated poster presentation that roughly outlines the study.

Wave declined to release details of the study or name its authors, but Won described the results. He said 71% of subjects in the group of 14 patients that received MERT instead of a placebo had positive changes in their visual response afterward, and 67% of subjects had positive changes in their verbal communication, according to their parents’ responses on the Childhood Autism Rating Scale (CARS).

“I never put much weight into the findings I see in a poster or talk, especially if it isn’t followed by a later peer-reviewed publication,” said Christine Conelea, an associate professor at the University of Minnesota Medical School who runs the university’s Non-Invasive Neuromodulation Laboratories.

“Small samples like this aren’t good for establishing the benefits of a treatment, conclusively showing safety, or demonstrating that an investigational treatment is better than placebo,” Conelea said.

Statistics taken from the unpublished study have featured prominently on the websites of at least 17 MERT clinics, as well as the primary website for the Brain Treatment Center, a trademark owned by Wave under which many MERT clinics do business.

Won said he was not aware that so many clinics were using the study’s conclusions as a marketing tool. Shortly after The Times asked Wave about the statistics, almost all of those clinics took them down.

“I don’t feel good about it,” he said. “A lot of families benefited from it [MERT], and their children are doing better, and that’s wonderful. But I don’t want to misrepresent or overrepresent things. … I would always want there to be published, peer-reviewed, academically rigorous science to back up a claim.”

Following The Times’ questions, Won said that Wave contacted the study authors and requested that they expedite the preparation and submission of a research paper containing the study results to a peer-reviewed journal. The company has also asked the authors to release the manuscript on a preprint server, a website where scientists can post preliminary findings.

“We need to get that publication out so that people can make informed decisions,” he said. “It would be easier if it’s in the public domain, and other people can critique it and break it down and take it for what it’s worth.”

Manuel Casanova, a retired University of South Carolina professor who spent years studying TMS as a potential autism therapy, questioned why MERT providers had so little empirical data to share after administering the treatment to thousands of autistic patients — a gap, he said, that “raises a red flag as to the therapeutic benefits of the technique.”


MERT providers operate in an “ethical gray area,” said Anna Wexler, an assistant professor at the University of Pennsylvania who studies the ethics of emerging technologies.

Doctors can use approved therapies to treat any condition they deem appropriate, Wexler said. But if the condition being treated isn’t the same one for which the therapy has been cleared, providers must be “as transparent as possible” about the evidence they’re relying on, she said. If there is little to no evidence to support MERT’s efficacy for a given condition, she said, “it is unethical for providers to advertise that it is effective.”

“If someone opts for an experimental therapy, that in itself is not problematic,” Wexler said. “What is problematic is if they are making that decision based on erroneous or incorrect beliefs about efficacy.”

Won did not respond to a question about Wexler’s critique.

Nine psychologists and neurologists with expertise in transcranial magnetic stimulation say there is to date no evidence to suggest this kind of therapy can reliably prompt a nonverbal autistic child to develop speech, or to significantly alter an autistic child’s sensory and communication abilities.

“The plain English is that it’s not there yet, and I have not seen it working convincingly outside of a strong placebo effect,” said Dr. Alexander Rotenberg, a professor of neurology at Harvard Medical School and director of Boston Children’s Hospital’s Neuromodulation Program.

Peter Enticott, a psychologist at Australia’s Deakin University, is leading a multisite trial of TMS for autism funded by the Australian government. Enticott has spoken with families whose children received MERT from Wave licensees in Australia and were thrilled with the outcomes. But for a scientist, uplifting anecdotes are not a substitute for data.

“It’s too early,” he said. “And I think it’s particularly problematic given that they are charging large amounts of money for an unverified therapy.”

Criticisms of the treatment’s pricing were “not a reflection of Wave Neuroscience,” Won said. “The comments seem to be objecting to the realities of the health care market.”

Scientists consulted by The Times said they would encourage families interested in TMS and autism to look for a clinical trial that would provide the treatment free of charge in exchange for using the patient’s data in a study.

“I would consider this something that should be researched, but nobody should be paying $5,000 to $10,000 out of pocket for this,” said Alycia Halladay, chief science officer at the Autism Science Foundation, one of five autism advocacy groups The Times consulted that said there is not enough evidence for them to recommend MERT.

Despite his disappointment, VanCott does not regret his decision. Had he not pursued the treatment, he would always wonder whether he turned down something that could have helped his son — no matter how high the cost, no matter how slim the chance.

“I mean, being able to sleep at night?” he said. “What’s that worth?”

©2024 Los Angeles Times. Visit at latimes.com. Distributed by Tribune Content Agency, LLC.

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Fearing the worst, schools deploy armed police to thwart gun violence https://www.pilotonline.com/2024/09/14/fearing-the-worst-schools-deploy-armed-police-to-thwart-gun-violence/ Sat, 14 Sep 2024 13:10:52 +0000 https://www.pilotonline.com/?p=7368160&preview=true&preview_id=7368160 By Christine Spolar | KFF Health News

PITTSBURGH — A false alarm that a gunman was roaming one Catholic high school and then another in March 2023 touched off frightening evacuations and a robust police response in the city. It also prompted the diocese to rethink what constitutes a model learning environment.

Months after hundreds of students were met by SWAT teams, the Catholic Diocese of Pittsburgh began forming its own armed police force.

Wendell Hissrich, a former safety director for the city and career FBI unit chief, was hired that year to form a department to safeguard 39 Catholic schools as well as dozens of churches in the region. Hissrich has since added 15 officers and four supervisors, including many formerly retired officers and state troopers, who now oversee school campuses fitted with Stop the Bleed kits, cameras, and defibrillators.

When religious leaders first asked for advice after what are known as “swatting” incidents, the veteran lawman said he didn’t hesitate to deliver blunt advice: “You need to put armed officers in the schools.”

But he added that the officers had to view schools as a special assignment: “I want them to be role models. I want them to be good fits within the school. I’m looking for someone to know how to deal with kids and with parents — and, most importantly, knows how to de-escalate a situation.”

Gun violence is a leading cause of death for young people in America, and the possibility of shootings has influenced costly decision-making in school systems as administrators juggle fear, duty, and dizzying statistics in efforts to keep schools safe from gun harm. In the first week of September, the risks were made tragically clear again, this time in Georgia, as a teenager stands accused of shooting his way through his high school and killing two students and two teachers.

Still, scant research supports the creation of school police forces to deter gun violence — and what data exists can raise as many questions as answers. Data shows over half of U.S. firearm deaths are, in fact, suicides — a sobering statistic from the federal Centers for Disease Control and Prevention that reflects a range of ills. Gun violence grew during the covid-19 pandemic and studies found that Black children were 100 times as likely as white children to experience firearm assaults. Research on racial bias in policing overall in the U.S. as well as studies on biased school discipline have prompted calls for caution. And an oft-cited U.S. Secret Service review of 67 thwarted plots at schools supports reasons to examine parental responsibility as well as police intervention as effective ways to stop firearm harm.

The Secret Service threat assessment, published in 2021, analyzed plots from 2006 to 2018 and found students who planned school violence had guns readily at home. It also found that school districts that contracted sworn law officers, who work as full- or part-time school resource officers, had some advantage. The officers proved pivotal in about a third of the 67 foiled plots by current or former students.

“Most schools are not going to face a mass shooting. Even though there are more of them — and that’s horrible — it is still a small number,” said Mo Canady, executive director of the National Association of School Resource Officers. “But administrators can’t really allow themselves to think that way.

“They have to think, ‘It could happen here, and how do I prevent it?’”

About a 20-minute drive north of Pittsburgh, a top public school system in the region decided the risk was too great. North Allegheny Superintendent Brendan Hyland last year recommended retooling what had been a two-person school resource officer team — staffed since 2018 by local police — into a 13-person internal department with officers stationed at each of the district’s 12 buildings.

Several school district board members voiced unease about armed officers in the hallways. “I wish we were not in the position in our country where we have to even consider an armed police department,” board member Leslie Britton Dozier, a lawyer and a mother, said during a public planning meeting.

Within weeks, all voted for Hyland’s request, estimated to cost $1 million a year.

Hyland said the aim is to help 1,200 staff members and 8,500 students “with the right people who are the right fit to go into those buildings.” He oversaw the launch of a police unit in a smaller school district, just east of Pittsburgh, in 2018.

Hyland said North Allegheny had not focused on any single news report or threat in its decision, but he and others had thought through how to set a standard of vigilance. North Allegheny does not have or want metal detectors, devices that some districts have seen as necessary. But a trained police unit willing to learn every entrance, stairway, and cafeteria and who could develop trust among students and staffers seemed reasonable, he said.

“I’m not Edison. I’m not inventing something,” Hyland said. “We don’t want to be the district that has to be reactive. I don’t want to be that guy who is asked: ‘Why did you allow this to happen?’”

Since 2020, the role of police in educational settings has been hotly debated. The video-recorded death of George Floyd, a Black man in Minneapolis who was murdered by a white police officer during an arrest, prompted national outrage and demonstrations against police brutality and racial bias.

Some school districts, notably in large cities such as Los Angeles and Washington, D.C., reacted to concerns by reducing or removing their school resource officers. Examples of unfair or biased treatment by school resource officers drove some of the decisions. This year, however, there has been apparent rethinking of the risks in and near school property and, in some instances in California, Colorado, and Virginia, parents are calling for a return of officers.

The 1999 bombing plot and shooting attack of Columbine High School and a massacre in 2012 at Sandy Hook Elementary School are often raised by school and police officials as reasons to prepare for the worst. But the value of having police in schools also came under sharp review after a blistering federal review of the mass shooting in 2022 at Robb Elementary School in Uvalde, Texas.

The federal Department of Justice this year produced a 600-page report that laid out multiple failures by the school police chief, including his attempt to try to negotiate with the killer, who had already shot into a classroom, and waiting for his officers to search for keys to unlock the rooms. Besides the teenage shooter, 19 children and two teachers died. Seventeen other people were injured.

The DOJ report was based on hundreds of interviews and a review of 14,000 pieces of data and documentation. This summer, the former chief was indicted by a grand jury for his role in “abandoning and endangering” survivors and for failing to identify an active shooter attack. Another school police officer was charged for his role in placing the murdered students in “imminent danger” of death.

There have also been increased judicial efforts to pursue enforcement of firearm storage laws and to hold accountable adults who own firearms used by their children in shootings. For the first time this year, the parents of a teenager in Michigan who fatally shot four students in 2021 were convicted of involuntary manslaughter for not securing a newly purchased gun at home.

In recent days, Colin Gray, the father of the teenage shooting suspect at Apalachee High School in Georgia, was charged with second-degree murder — the most severe charges yet against a parent whose child had access to firearms at home. The 14-year-old, Colt Gray, who was apprehended by school resource officers on the scene, according to initial media reports, also faces murder charges.

Hissrich, the Pittsburgh diocese’s safety and security director, said he and his city have a hard-earned appreciation for the practice and preparation needed to contain, if not thwart, gun violence. In January 2018, Hissrich, then the city’s safety officer, met with Jewish groups to consider a deliberate approach to safeguarding facilities. Officers cooperated and were trained on lockdown and rescue exercises, he said.

Ten months later, on Oct. 27, 2018, a lone gunman entered the Tree of Life synagogue and, within minutes, killed 11 people who had been preparing for morning study and prayer. Law enforcement deployed quickly, trapping and capturing the shooter and rescuing others caught inside. The coordinated response was praised by witnesses at the trial where the killer was convicted in 2023 on federal charges and sentenced to die for the worst antisemitic attack in U.S. history.

“I knew what had been done for the Jewish community as far as safety training and what the officers knew. Officers practiced months before,” Hissrich said. He believes schools need the same kind of plans and precautions. “To put officers in the school without training,” he said, “would be a mistake.”

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.

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7368160 2024-09-14T09:10:52+00:00 2024-09-14T09:11:14+00:00
How parents and caregivers can evaluate the research on MERT and other potential treatments https://www.pilotonline.com/2024/09/13/how-parents-and-caregivers-can-evaluate-the-research-on-mert-and-other-potential-treatments/ Fri, 13 Sep 2024 20:25:31 +0000 https://www.pilotonline.com/?p=7366938&preview=true&preview_id=7366938 Corinne Purtill | (TNS) Los Angeles Times

As diagnoses of autism spectrum disorder have increased in the last two decades, so have the number of experimental and off-label therapies seeking to address the condition.

For parents navigating the complex and often contradictory landscape of autism interventions — while also balancing medical appointments, educational specialists and countless other family needs — evaluating these treatments can be daunting.

Experts in autism research talked to The Times about what parents and patients should watch for when evaluating a potential new treatment — for autism or any other condition.

Take testimonials with a grain of salt

Firsthand accounts of a therapy’s life-changing effects can be powerfully compelling. But such stories alone can’t indicate how effective a treatment will be for anyone else, autism experts said.

“Be wary of therapies that are sold to you with testimonials. If you go to a clinic website and they have dozens of quotes from parents saying ‘This changed my child’s life in XYZ ways,’ that isn’t the same as evidence,” said Zoe Gross of the Autistic Self Advocacy Network, a nonprofit group run by and for autistic adults. “If the main way something’s advertised is through testimonials, it may be because there isn’t research, or what research was done showed it wasn’t effective.”

Without accompanying data, there is no way to know whether any patient’s experience with a treatment is typical or an outlier. A therapy could have only a 1% success rate, Gross said, and still yield dozens of positive outcomes once thousands of people have tried it.

Former patient stories can be a starting point for an exploration of whether a therapy is right for someone, doctors said, but the exploration shouldn’t end there.

“There’s an old saying in medicine,” said Dr. Andrew Leuchter, director of UCLA’s TMS Clinical and Research Service. “The plural of anecdote is not data.”

Look for — and at — the research

“Right now, it’s really sexy to call yourself ‘evidence-based,’” said Dr. David Celiberti, executive director of the nonprofit Assn. for Science in Autism Treatment. “For a consumer, that’s amazing. You hear ‘evidence-based’ and of course, you’re going to be drawn to it. But people are using that term very loosely.”

In the case of magnetic e-resonance therapy, or MERT, its developer Wave Neuroscience features on its website a library of research. Similar links feature on the sites of many licensee clinics.

Most of the publications related to autism cited by MERT clinics — and, at times, by Wave — are either limited in scope or only tangentially related to the therapy, a half-dozen experts said, including some whose work is cited.

One of them, for example, is a brief 2016 article from the Austin Journal of Autism and Related Disabilities titled “The Potential of Magnetic Resonant Therapy in Children with Autism Spectrum Disorder.”

Its authors and advisors said they were surprised to learn the paper was being used to advertise the treatment. The paper contains no data or original research and concludes only that MERT could be studied further as an autism therapy without risk of serious harm.

“This isn’t an evidence-based paper. It’s an opinion piece about the possibilities of this technology,” said Dr. John Crawford, a neurologist at Children’s Hospital of Orange County and a co-author of the paper. “It’s not that impactful from a scientific perspective.”

Who else has verified these findings?

Many MERT clinics feature a 2014 electronic poster presentation that examines data from the charts of 141 children who received transcranial magnetic stimulation, the therapy on which MERT is based, for autism.

Until March, Wave featured the poster on its website and highlighted that 59.1% of 44 participants who completed 12 months of treatment improved their scores on the Childhood Autism Rating Scale, an assessment tool used to gauge symptom severity.

A closer look at the report shows that after five days of treatment, 38 patients were dropped from the analysis because their symptoms either showed no improvement or worsened. One had a seizure during treatment.

The authors excluded dozens more patients for various reasons. Of the remaining 44 patients, 26 saw improvement while getting the treatment. That was 59.1% of those remaining, as the poster said, but only 18.4% of the total study population.

The write-up also notes that many of those 26 children were receiving other therapies at the same time that may have been responsible for some or all of the improvements.

Posters are typically prepared as a way to highlight findings at professional conferences and “cannot be interpreted as having undergone rigorous peer review,” said USC neurosurgeon Dr. Charles Liu, a co-author on the poster who is not affiliated with Wave or any MERT clinics.

“The main point of the abstract is and remains that more rigorous studies must [be] done.”

If research shows changes, how do you know the therapy caused it?

Wave and licensees also highlight a 2022 paper by a technician at a licensee clinic in Australia who is also a doctoral candidate at Australia’s University of the Sunshine Coast.

It looks at data from 28 patients at two MERT clinics in Australia whose brains showed “significant improvement” in their individual alpha frequency waves after treatment.

Although some previous research has found correlations between atypical alpha wave frequency and autism diagnoses, six scientists told The Times that there isn’t yet enough evidence to understand how changes in alpha waves affect autistic traits, or any scientific consensus on whether “improvement” in this pattern of brain activity has any meaningful effect on autistic behaviors.

The report is a retrospective chart review, which examines existing data from patients’ medical records and is often used to identify interesting outcomes worthy of further study.

By design it does not include a control group, which is what allows researchers to identify whether any changes they see are related to the variable they are studying. Its authors noted in the paper that findings are preliminary and require further study.

“Because this was not a controlled trial or study, [the cause of the changes] could have been anything including placebo effect, any additional therapies the children were receiving, etc.,” said Lindsay Oberman, director of the Neurostimulation Research Program at the National Institute of Mental Health.

Medical research follows a hierarchy of evidence. At the bottom are anecdotes and observations: valid points of information that alone aren’t enough to draw broad conclusions from.

Above that are observational studies that collect and analyze preexisting data in a systematic way. And at the top are randomized controlled trials, which are designed to eliminate as much bias as possible from the experiment and ensure that the thing being studied is responsible for any changes observed.

“Families need to know that there is this gold standard for studies — to make sure that something works to help people with autism, it needs to have what’s called a randomized controlled trial,” said Alycia Halladay, chief science officer at the Autism Science Foundation.

©2024 Los Angeles Times. Visit at latimes.com. Distributed by Tribune Content Agency, LLC.

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