Does Netflix Trivialize Pain?

By Pat Anson, PNN Editor

Movies and TV shows have long been criticized for the way they depict women, minorities and religions -- either through sensationalism, stereotyped portrayals, or simply omission.

A new analysis of popular programs that aired on Netflix suggests that physical pain is also being ignored, trivialized, or presented in misleading ways.

Researchers in Canada and the UK looked at over a dozen movies and TV series that featured teenage characters. They found that the teens’ pain was almost always the result of violence or accidents – not common medical conditions such as migraine or menstruation. The characters often had minimal reactions to their own pain and observers had “an overwhelming lack of empathy” for them.   

“If we’re not showing the types of pain that adolescents might typically experience like back pain and menstrual pain, then we’re trivializing pain. We’re not doing a great job of enabling them to think about how to manage pain, how to talk about pain and how to show empathy when other people experience pain,” said lead author Abbie Jordan, PhD, a lecturer in the Department of Psychology and Centre for Pain Research at The University of Bath.

“This research matters because if every film and television series shows a boy being a ‘tough guy’ when they experience pain and a girl as a ‘damsel in distress’ in need of saving, they might think they have to be like that in real life. This depiction reinforces old-fashioned ideas about gender and is misleading."

Jordan and her colleagues watched programs such as Sex Education, Stranger Things and Enola Holmes, and found that viewers were exposed to an average of 10 incidents of pain every hour.

The two Netflix shows with the highest number of painful incidents were Outer Banks, a series about teens searching for a hidden treasure, and Spiderman: Homecoming, a movie about a young Peter Parker facing off against a new villain.

Violence (57%) was the most likely cause of pain on the Netflix shows, followed by everyday pain such as headaches (21%) and pain stemming from injuries (20%). Chronic pain or pain resulting from medical procedures were depicted less than one percent of the time.

“‘OUTER BANKS”

Researchers say the Netflix shows often reinforced sexist and patriarchal stereotypes. Boy characters were more likely to experience pain (77%) than girls (23%), and they were also more likely to be criticized or laughed at by other characters. Boys were often portrayed as heroic figures coming to the rescue, while girls were more emotional when reacting to pain.   

The plots and characters are all fictional, but researchers say adolescents watching at home are likely to mirror the behavior themselves.  

“Media is one of the most powerful engines of influence on children’s development and could be harnessed to address pain and suffering in the world. Stories matter. Fictional stories can matter more in some cases than real-life stories. So, let's create stories to reflect the world we want to see: A humane, diverse, inclusive, equitable, compassionate, and caring world,” says co-author Melanie Noel, PhD, an Associate Professor of Clinical Psychology at the University of Calgary.

“I want Netflix to take this seriously and get excited and inspired to directly influence millions of children around the world. They have a monumental opportunity to influence the compassion and humanity we see in our children and our future world.”

The study findings, published in the journal PAIN, echo a previous study that showed pain was trivialized for even younger children (aged 4-6 years). That study also showed that chronic pain in childhood and adolescence was rarely portrayed in popular media.

Finding Medical Care Can Be Exhausting for Seniors

By Judith Graham, KFF Health News

Susanne Gilliam, 67, was walking down her driveway to get the mail in January when she slipped and fell on a patch of black ice. Pain shot through her left knee and ankle. After summoning her husband on her phone, with difficulty she made it back to the house.

And then began the run-around that so many people face when they interact with America’s uncoordinated health care system.

Gilliam’s orthopedic surgeon, who managed previous difficulties with her left knee, saw her that afternoon but told her “I don’t do ankles.”

He referred her to an ankle specialist who ordered a new set of X-rays and an MRI. For convenience’s sake, Gilliam asked to get the scans at a hospital near her home in Sudbury, Massachusetts. But the hospital didn’t have the doctor’s order when she called for an appointment. It came through only after several more calls.

Coordinating the care she needs to recover, including physical therapy, became a part-time job for Gilliam. (Therapists work on only one body part per session, so she has needed separate visits for her knee and for her ankle several times a week.)

“The burden of arranging everything I need — it’s huge,” Gilliam told me. “It leaves you with such a sense of mental and physical exhaustion.”

The toll the American health care system extracts is, in some respects, the price of extraordinary progress in medicine. But it’s also evidence of the poor fit between older adults’ capacities and the health care system’s demands.

“The good news is we know so much more and can do so much more for people with various conditions,” said Thomas H. Lee, chief medical officer at Press Ganey, a consulting firm that tracks patients’ experiences with health care. “The bad news is the system has gotten overwhelmingly complex.”

Multiple Doctors Visits

That complexity is compounded by the proliferation of guidelines for separate medical conditions, financial incentives that reward more medical care, and specialization among clinicians, said Ishani Ganguli, an associate professor of medicine at Harvard Medical School.

“It’s not uncommon for older patients to have three or more heart specialists who schedule regular appointments and tests,” she said. If someone has multiple medical problems — say, heart disease, diabetes, and glaucoma — interactions with the health care system multiply.

Ganguli is the author of a new study showing that Medicare patients spend about three weeks a year having medical tests, visiting doctors, undergoing treatments or medical procedures, seeking care in emergency rooms, or spending time in the hospital or rehabilitation facilities. (The data is from 2019, before the covid pandemic disrupted care patterns. If any services were received, that counted as a day of health care contact.)

That study found that slightly more than 1 in 10 seniors, including those recovering from or managing serious illnesses, spent a much larger portion of their lives getting care — at least 50 days a year.

“Some of this may be very beneficial and valuable for people, and some of it may be less essential,” Ganguli said. “We don’t talk enough about what we’re asking older adults to do and whether that’s realistic.”

Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minnesota, has for many years raised an alarm about the “treatment burden” that patients experience. In addition to time spent receiving health care, this burden includes arranging appointments, finding transportation to medical visits, getting and taking medications, communicating with insurance companies, paying medical bills, monitoring health at home, and following recommendations such as dietary changes.

Overwhelmed Patients

Four years ago — in a paper titled “Is My Patient Overwhelmed?” — Montori and several colleagues found that 40% of patients with chronic conditions such as asthma, diabetes, and neurological disorders “considered their treatment burden unsustainable.”

When this happens, people stop following medical advice and report having a poorer quality of life, the researchers found. Especially vulnerable are older adults with multiple medical conditions and low levels of education who are economically insecure and socially isolated.

Older patients’ difficulties are compounded by medical practices’ increased use of digital phone systems and electronic patient portals — both frustrating for many seniors to navigate — and the time pressures afflicting physicians.

“It’s harder and harder for patients to gain access to clinicians who can problem-solve with them and answer questions,” Montori said.

Meanwhile, clinicians rarely ask patients about their capacity to perform the work they’re being asked to do.

“We often have little sense of the complexity of our patients’ lives and even less insight into how the treatments we provide (to reach goal-directed guidelines) fit within the web of our patients’ daily experiences,” several physicians wrote in a 2022 paper on reducing treatment burden.

Consider what Jean Hartnett, 53, of Omaha, Nebraska, and her eight siblings went through after their 88-year-old mother had a stroke in February 2021 while shopping at Walmart. At the time, the older woman was looking after Hartnett’s father, who had kidney disease and needed help with daily activities such as showering and going to the bathroom.

During the year after the stroke, both of Hartnett’s parents — fiercely independent farmers who lived in Hubbard, Nebraska — suffered setbacks, and medical crises became common. When a physician changed her mom’s or dad’s plan of care, new medications, supplies, and medical equipment had to be procured, and new rounds of occupational, physical, and speech therapy arranged.

Neither parent could be left alone if the other needed medical attention.

“It wasn’t unusual for me to be bringing one parent home from the hospital or doctor’s visit and passing the ambulance or a family member on the highway taking the other one in,” Hartnett explained. “An incredible amount of coordination needed to happen.”

Hartnett moved in with her parents during the last six weeks of her father’s life, after doctors decided he was too weak to undertake dialysis. He passed away in March 2022. Her mother died months later in July.

Easing the Healthcare Burden

So, what can older adults and family caregivers do to ease the burdens of health care?

To start, be candid with your doctor if you think a treatment plan isn’t feasible and explain why you feel that way, said Elizabeth Rogers, an assistant professor of internal medicine at the University of Minnesota Medical School. 

“Be sure to discuss your health priorities and trade-offs: what you might gain and what you might lose by forgoing certain tests or treatments,” she said. Ask which interventions are most important in terms of keeping you healthy, and which might be expendable.

Doctors can adjust your treatment plan, discontinue medications that aren’t yielding significant benefits, and arrange virtual visits if you can manage the technological requirements. (Many older adults can’t.)

Ask if a social worker or a patient navigator can help you arrange multiple appointments and tests on the same day to minimize the burden of going to and from medical centers. These professionals can also help you connect with community resources, such as transportation services, that might be of help. (Most medical centers have staff of this kind, but physician practices do not.)

If you don’t understand how to do what your doctor wants you to do, ask questions: What will this involve on my part? How much time will this take? What kind of resources will I need to do this? And ask for written materials, such as self-management plans for asthma or diabetes, that can help you understand what’s expected.

“I would ask a clinician, ‘If I chose this treatment option, what does that mean not only for my cancer or heart disease, but also for the time I’ll spend getting care?’” said Ganguli of Harvard. “If they don’t have an answer, ask if they can come up with an estimate.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues. 

Keeping Hope Alive

By Mia Maysack, PNN Columnist

In 2022, I was fortunate enough to receive the International Pain Foundation's “Hero of Hope”' award for patient advocacy. I felt and still feel remarkably honored for the recognition, although I am not motivated by any accolade or prestige. I fight for those who can't. I use my voice so others can be heard.

As a patient advocate, I’ve learned the absolute most important thing that I can do is rescue myself – repeatedly. If I don't make it and I'm no longer here, what good can I do or offer to anybody else?

Recently, I've struggled immensely. There have been moments that haven't felt survivable. I sought support, reached out for help, attended therapy, and tried endless lifestyle approaches with little to no progress in how I feel.

It is important for me to express this publicly because I want to drive the point home: An optimistic perspective alone is not enough for survival. You can seek out the bright side, acknowledge how things could always be worse, recognize all your blessings, and be grateful for them -- yet still suffer immensely.

I reached out to someone to vent some of this, in what I'd hoped would be a receptive and safe space. But I was quickly reminded of the extent to which people simply don't know how to navigate others' hardships or struggles.

“I'm having a rough time,” I said.

“Maybe you need to go to counseling,” they replied.

“I tried that again recently. But my medical trauma is extensive. It did not help and actually worsened things for me."

[insert awkward silence here]

"Ordinarily,” I continued, “I’d pour myself into other causes, things, and people. That usually helps, but I am struggling with energy and motivation.”

“Sounds like depression,” they said.

“Depression isn’t new to me,” I explained. “Coping with daily ailments isn’t something that everyone can bear. Depression in these instances occurs by default. It’s an underlying current underneath the symptoms, constantly demanding my attention and effort to accommodate and manage it.”

"I think you need to pour into yourself,” was their reply.

"I have, extensively. But it is as though I'm a cracked cup and it all leaks out,” I said.

[insert another awkward silence]

At this point, I can sense they are uncomfortable, so I rush to ease their pain as mine intensifies. And I’m reminded how there’s just about nowhere for us to turn where we can be adequately received or understood.

“But I will figure it out, I always do,” I declared, tears running down my cheeks.

"Now that's the spirit!” they proclaimed.

I’ve always possessed “spirit” but sometimes it’s not enough. This is why I have such a profound empathy for those who idealize or even follow through on ending life. I see and understand how and to what extent we reach out for help, yet I'm repeatedly reminded that we're ultimately left on our own -- by each other, by our systems, and by society as a whole.

No one wants you to end your existence, yet almost nothing and no one is there to contribute meaningfully to your quality of life.

In observation of this and because I strongly believe in cultivating solutions -- as opposed to fixating on problems – I’m supporting efforts by the American Foundation for Suicide Prevention to raise awareness and talk about how we can prevent suicide and increase access to mental healthcare.

The darkness in me honors yours. It's not only okay, but profoundly necessary to allow that part of ourselves to exist out loud. It’s the only way through to the light. 

I imagine a future where we don't have to beg and plead for basic human needs, and we’re no longer alone in attempting to figure it all out.  This vision keeps me going and keeps the fire of hope alive.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

For anyone thinking about suicide, please contact the 988 Suicide & Crisis Lifeline, available online, via chat, or by dialing “988.”  A comprehensive set of resources can also be found at this link.

Toxic Stress Can Lead to Chronic Illness

By Dr. Lawson Wulsin  

COVID-19 taught most people that the line between tolerable and toxic stress – defined as persistent demands that lead to disease – varies widely. But some people will age faster and die younger from toxic stressors than others.

So how much stress is too much, and what can you do about it?

I’m a psychiatrist specializing in psychosomatic medicine, which is the study and treatment of people who have physical and mental illnesses. My research is focused on people who have psychological conditions and medical illnesses as well as those whose stress exacerbates their health issues.

I’ve spent my career studying mind-body questions and training physicians to treat mental illness in primary care settings. My forthcoming book is titled “Toxic Stress: How Stress is Killing Us and What We Can Do About It.”

A 2023 study of stress and aging over the life span – one of the first studies to confirm this piece of common wisdom – found that four measures of stress all speed up the pace of biological aging in midlife. It also found that persistent high stress ages people in a comparable way to the effects of smoking and low socioeconomic status, two well-established risk factors for accelerated aging.

Good Stress vs. Toxic Stress

Good stress – a demand or challenge you readily cope with – is good for your health. In fact, the rhythm of these daily challenges, including feeding yourself, cleaning up messes, communicating with one another and carrying out your job, helps to regulate your stress response system and keep you fit.

Toxic stress, on the other hand, wears down your stress response system in ways that have lasting effects, as psychiatrist and trauma expert Bessel van der Kolk explains in his bestselling book “The Body Keeps the Score.”

The earliest effects of toxic stress are often persistent symptoms such as headache, fatigue or abdominal pain that interfere with overall functioning. After months of initial symptoms, a full-blown illness with a life of its own – such as migraine headaches, asthma, diabetes or ulcerative colitis – may surface.

When we are healthy, our stress response systems are like an orchestra of organs that miraculously tune themselves and play in unison without our conscious effort – a process called self-regulation. But when we are sick, some parts of this orchestra struggle to regulate themselves, which causes a cascade of stress-related dysregulation that contributes to other conditions.

For instance, in the case of diabetes, the hormonal system struggles to regulate sugar. With obesity, the metabolic system has a difficult time regulating energy intake and consumption. With depression, the central nervous system develops an imbalance in its circuits and neurotransmitters that makes it difficult to regulate mood, thoughts and behaviors.

Though stress neuroscience in recent years has given researchers like me new ways to measure and understand stress, you may have noticed that in your doctor’s office, the management of stress isn’t typically part of your treatment plan.

Most doctors don’t assess the contribution of stress to a patient’s common chronic diseases such as diabetes, heart disease and obesity, partly because stress is complicated to measure and partly because it is difficult to treat. In general, doctors don’t treat what they can’t measure.

1 in 5 Americans Live with Toxic Stress

Stress neuroscience and epidemiology have also taught researchers recently that the chances of developing serious mental and physical illnesses in midlife rise dramatically when people are exposed to trauma or adverse events, especially during vulnerable periods such as childhood.

Over the past 40 years in the U.S., the alarming rise in rates of diabetes, obesity, depression, PTSD, suicide and addictions points to one contributing factor that these different illnesses share: toxic stress.

Toxic stress increases the risk for the onset, progression, complications or early death from these illnesses.

Because the definition of toxic stress varies from one person to another, it’s hard to know how many people struggle with it. One starting point is the fact that about 16% of adults report having been exposed to four or more adverse events in childhood. This is the threshold for higher risk for illnesses in adulthood.

Research dating back to before the COVID-19 pandemic also shows that about 19% of adults in the U.S. have four or more chronic illnesses. If you have even one chronic illness, you can imagine how stressful four must be.

And about 12% of the U.S. population lives in poverty, the epitome of a life in which demands exceed resources every day. For instance, if a person doesn’t know how they will get to work each day, or doesn’t have a way to fix a leaking water pipe or resolve a conflict with their partner, their stress response system can never rest. One or any combination of threats may keep them on high alert or shut them down in a way that prevents them from trying to cope at all.

Add to these overlapping groups all those who struggle with harassing relationships, homelessness, captivity, severe loneliness, living in high-crime neighborhoods or working in or around noise or air pollution. It seems conservative to estimate that about 20% of people in the U.S. live with the effects of toxic stress.

Recognizing and Managing Stress

The first step to managing stress is to recognize it and talk to your primary care clinician about it. The clinician may do an assessment involving a self-reported measure of stress.

The next step is treatment. Research shows that it is possible to retrain a dysregulated stress response system. This approach, called “lifestyle medicine,” focuses on improving health outcomes through changing high-risk health behaviors and adopting daily habits that help the stress response system self-regulate.

Adopting these lifestyle changes is not quick or easy, but it works.

The National Diabetes Prevention Program, the Ornish “UnDo” heart disease program and the U.S. Department of Veterans Affairs PTSD program, for example, all achieve a slowing or reversal of stress-related chronic conditions through weekly support groups and guided daily practice over six to nine months. These programs help teach people how to practice personal regimens of stress management, diet and exercise in ways that build and sustain their new habits.

There is now strong evidence that it is possible to treat toxic stress in ways that improve health outcomes for people with stress-related conditions. The next steps include finding ways to expand the recognition of toxic stress and, for those affected, to expand access to these new and effective approaches to treatment.

Lawson R. Wulsin, MD, is a Professor of Psychiatry and Family Medicine at University of Cincinnati. He also practices psychiatry in primary care settings, specializing in psychosomatic medicine.

This article originally appeared in The Conversation and is republished with permission.

A Case Study in the Undertreatment of Surgical Pain

By Dr. Stefan Franzen

“Patient Z” is a close family member who has an incurable form of arthritis known as ankylosing spondylitis. His back is partially fused and his large joints are so damaged that they all need replacement. Each step he takes, even with a walker using his arms as the main support, is exceedingly painful. Just getting into a car to go to a doctor’s office is excruciating.

Several years ago, Patient Z went through an opioid rotation from morphine/oxycodone to buprenorphine. This was a forced choice. His pain clinic told him that they would make a final push to taper him to a daily dose of 120 MME (morphine milligram equivalents). That was the statewide cap on prescribing. Patient Z had reduced gradually for years to accommodate them, but when the dose fell below 180 MME, he felt miserable much of the time.

Patient Z transferred to a pain institute where he was prescribed pure buprenorphine for pain. The doctors at the institute had conducted clinical studies and found buprenorphine to be as effective as morphine. When Patient Z reached the maximum daily dose of buprenorphine in sublingual form, he felt relief.

Patient Z might never have chosen buprenorphine, but he found that it managed his pain on most days. In his experience, the dose was as effective as 200 MME of morphine and oxycodone. But pain flares can overwhelm even that dose.

A surgeon urged surgery because stenosis and deformation of the neck caused by ankylosing spondylitis could lead to paralysis. Realizing that he was losing sensation in his arms and hands, Patient Z scheduled the surgery.

At the pre-op, he was told that the surgery required an incision in the front and back of his neck. The surgeon would implant a metal brace that was about 5 cm long. Patient Z asked the surgeon’s nurse about pain management and she assured him that he would be comfortable in the hospital.

He also asked his pain clinic what they would do to help with post-operative pain. They told him to rely on hospital care. Patient Z knew the constraints on the pain clinic and did not push the point. When he arrived for surgery, he still did not know what was planned for post-surgical pain control.

‘My Pain Level is 10’

The surgery was successful. Patient Z woke up in a hospital bed with a neck brace. But he could not move. After a few hours the pain set in. He could not believe that pain could be so all-consuming. Even lying motionless in bed, his body throbbed with pain radiating out from the back of his neck. He felt like he was nailed to the bed.

The nurses were told not to give him buprenorphine on the first night. One nurse said he was afraid that Patient Z would suffer respiratory depression. At first, they only gave him acetaminophen and pregabalin.

In the middle of the night, Patient Z called the nurse and said something he never thought he would say: “My pain level is 10.”

The nurse left to contact the doctor in charge. An hour passed. It seemed like an eternity to Patient Z, who was in agony. Finally, the nurse returned with a muscle relaxant and a two-milligram hydromorphone pill. That is the equivalent of 8-10 milligrams of oral morphine.

Patient Z knew how low this dose was, but he swallowed the pill and hoped the pain would stop. It did not. Patient Z is stoic and had suffered from extreme pain in the past, but he had to speak up. The pain was truly unbearable. His collapsed hips were throbbing. Pain was shooting down his arms and legs. Any movement brought on involuntary spasms.

Finally, at 5 am, a nurse gave Patient Z a two-milligram injection of hydromorphone. The pain abated and he could finally rest. This dynamic of denial and waiting until Patient Z was nauseous from pain before providing relief continued for three more days. Nurses rotated in and out, and the doctors made decisions that left him miserable most of the time.

On the fourth day after surgery, Patient Z was released from the hospital. Patient Z asked what he should do to control the pain. The surgeon looked unhappy. He said that the pain of surgery should pass within a week and Patient Z had already received ample pain medication. Other pain was not the surgeon’s concern, and he was told to consult with his pain physician.

By this time, one of the nurses who had seen Patient Z several times came to understand how debilitating his pain was. The nurse told Patient Z that she had observed many recovering surgery patients. She said that neck operations with an incision from the back is one of the most painful.

Patient Z was lucky that people could see his struggle with pain. Many patients have pain that is not recognized. Even so, the nurse told him that they could not write a prescription for opioid pain medication. Someone must have decided that Patient Z really did have unmet pain needs.

Maybe the nurse advocated for him because, as Patient Z was being released the nurse unexpectedly gave him a vial of pain medication. She said that it would be enough to keep him comfortable until the neck pain subsided. When Patient Z arrived home and looked at the vial, he saw that the oral hydromorphone dose was 12 milligrams daily, the equivalent of approximately 50 MME. And he only had a six-day supply.

This was not nearly enough to give Patient Z relief from the neck pain, back pain, hip pain and systemic inflammatory pain. To make matters worse, the instructions stated that he should not take buprenorphine for the six days he was on hydromorphone.

After one day, Patient Z’s misery escalated because he was going through withdrawal while also recovering from neck surgery. After two days, Patient Z resumed taking buprenorphine and stopped taking hydromorphone. At least the buprenorphine gave him partial relief.

Few patients take buprenorphine for pain in the U.S. It has been reported that hydromorphone is compatible with buprenorphine in post-surgical pain management.  Yet doctors and nurses appeared unfamiliar with buprenorphine, which is also used to treat opioid addiction when combined with naloxone. Their comments in the hospital showed that they did not understand that buprenorphine is safer than other opioids and can also be used to treat pain.

The combination of misunderstanding buprenorphine and the current practice of giving as little pain medication as possible put a severely ill patient through an unnecessary ordeal. Today, most medical education and pain research is solely aimed at reducing or eliminating opioids, rather than using buprenorphine and other alternative opioids to provide at least some relief.

Buprenorphine is slow-acting and therefore not the ideal medication for acute pain. But studies have shown that it can be combined with other opioids to provide relief. For some types of pain, there is no substitute for opioid pain medication.

Stefan Franzen, PhD, is a Professor of Chemistry at North Carolina State University.

He is the author of “Patient Z” – a book that looks at pain, addiction and the opioid crisis through the eyes of a loved one who can’t find good pain care.

Franzen recently published a sequel to Z’s story and his use of buprenorphine for pain, called “Z’s Odyssey.”

Where is CDC’s Guidance About Its Opioid Guideline?

By Carol Levy, PNN Columnist

By happenstance, I recently came across the CDC's 2022 revised opioid prescribing guideline. Too many doctors and states saw the agency’s original 2016 guideline as being written in stone -- not the voluntary set of recommendations they were intended to be.

To their credit, the CDC tried to address that misconception in its updated guideline:

“Recommendations are voluntary and are intended to support, not supplant, individualized, person-centered care. Flexibility to meet the care needs and the clinical circumstances of a specific patient is paramount.”

The CDC also acknowledged the damage done by its 2016 guideline, when many pain patients were forcibly tapered or cutoff from opioids, regardless of their diagnosis or condition. 

Some patients were abandoned by doctors who no longer wanted to risk going to prison for prescribing opioids. Other physicians retired or closed their offices, sometimes without warning. And several states passed legislation limiting how many days initial opioid prescriptions could be written for.

It is always hard to put the genie back in the bottle. Two years after the revised guideline was released, about 90% of patients still have trouble getting their opioid prescriptions filled at pharmacies. Others have to fight with their insurance company to get opioid medication covered.

Patients are still being forced into withdrawal and disability, despite a history of taking opioids safely and responsibly. Some will have to leave jobs they could only perform with the help of opioids. Others can’t play with their kids, walk the dog or even get out of bed, because they are no longer able to get the medication that helped them lead relatively normal lives.

It should not have taken CDC six years to revise the opioid guideline, to make clear that they were only recommendations and never a mandate.

Is there a way to undo the damage? For the doctors who closed their practices or stopped treating pain, it is probably too late. For the patients who chose suicide because they could no longer get opioids, it is definitely too late

But maybe, just maybe, we can persuade doctors, pharmacists, lawmakers and insurers to take another look at the revised opioid guideline and convince them they are out of line.

It would be helpful if the CDC joined in an effort to fix the mess that it helped create.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

Ransomware Hackers Disrupt Healthcare Payment System

By Darius Tahir, KFF Health News

Early in the morning of Feb. 21, Change Healthcare, a company unknown to most Americans that plays a huge role in the U.S. health system, issued a brief statement saying some of its applications were “currently unavailable.”

By the afternoon, the company described the situation as a “cyber security” problem.

Since then, it has rapidly blossomed into a crisis.

The company, recently purchased by insurance giant UnitedHealth Group, reportedly suffered a cyberattack. The impact is wide and expected to grow. Change Healthcare’s business is maintaining health care’s pipelines — payments, requests for insurers to authorize care, and much more. Those pipes handle a big load: Change says on its website, “Our cloud-based network supports 14 billion clinical, financial, and operational transactions annually.”

Initial media reports have focused on the impact on pharmacies, but techies say that’s understating the issue. The American Hospital Association says many of its members aren’t getting paid and that doctors can’t check whether patients have coverage for care.

But even that’s just a slice of the emergency: CommonWell, an institution that helps health providers share medical records, information critical to care, also relies on Change technology. The system contained records on 208 million individuals as of July 2023. Courtney Baker, CommonWell marketing manager, said the network “has been disabled out of an abundance of caution.”

“It’s small ripple pools that will get bigger and bigger over time, if it doesn’t get solved,” Saad Chaudhry, chief digital and information officer at Luminis Health, a hospital system in Maryland, told KFF Health News.

Here’s what to know about the hack:

Who Did It?

Media reports are fingering ALPHV, a notorious ransomware group also known as BlackCat, which has become the target of numerous law enforcement agencies worldwide. While UnitedHealth Group has said it is a “suspected nation-state associated” attack, some outside analysts dispute the linkage. The gang has previously been blamed for hacking casino companies MGM and Caesars, among many other targets.

The Department of Justice alleged in December, before the Change hack, that the group’s victims had already paid it hundreds of millions of dollars in ransoms.

(Update: UnitedHealth confirmed Thursday that Blackcat was responsible for the hacking. “We are actively working to understand the impact to members, patients and customers,” Tyler Mason, a vice president at UnitedHealth, told TechCrunch.

Another UnitedHealth executive said the payment system could be disrupted “for the next couple of weeks,” according to STAT News.

In a post on its website, BlackCat took credit for the cyberattack and claimed to have stolen millions of Americans’ sensitive health and patient information. The post was later deleted.)

Is This a New Problem?

Absolutely not. A study published in JAMA Health Forum in December 2022 found that the annual number of ransomware attacks against hospitals and other providers doubled from 2016 to 2021.

“It’s more of the same, man,” said Aaron Miri, the chief digital and information officer at Baptist Health in Jacksonville, Florida.

Because the assaults disable the target’s computer systems, providers have to shift to paper, slowing them down and making them vulnerable to missing information.

Further, a study published in May 2023 in JAMA Network Open examining the effects of an attack on a health system found that waiting times, median length of stay, and incidents of patients leaving against medical advice all increased — at neighboring emergency departments. The results, the authors wrote, mean cyberattacks “should be considered a regional disaster.”

Attacks have devastated rural hospitals, Miri said. And wherever health care providers are hit, patient safety issues follow.

Care can also suffer. For example, a 2017 attack, dubbed “NotPetya,” forced a rural West Virginia hospital to reboot its operations and hit pharma company Merck so hard it wasn’t able to fulfill production targets for an HPV vaccine.

Because of the Change Healthcare attack, some patients may be routed to new pharmacies less affected by billing problems. Patients’ bills may also be delayed, industry executives said. At some point, many patients are likely to receive notices their data was breached. Depending on the exact data that has been pilfered, those patients may be at risk for identity theft, Chaudhry said. Companies often offer free credit monitoring services in those situations.

“Patients are dying because of this,” Miri said. Indeed, an October preprint from researchers at the University of Minnesota found a nearly 21% increase in mortality for patients in a ransomware-stricken hospital.

How Did It Happen?

The Health Information Sharing and Analysis Center, an industry coordinating group that disseminates intel on attacks, has told its members that flaws in an application called ConnectWise ScreenConnect are to blame. Exact details couldn’t be confirmed.

It’s a tool tech support teams use to remotely troubleshoot computer problems, and the attack is “apparently fairly trivial to execute,” H-ISAC warned members. The group said it expects additional victims and advised its members to update their technology. When the attack first hit, the AHA recommended its members disconnect from systems both at Change and its corporate parent, UnitedHealth’s Optum unit. That would affect services ranging from claims approvals to reference tools.

Millions of Americans see physicians and other practitioners employed by UnitedHealth and are covered by the company’s insurance plans. UnitedHealth has said only Change’s systems are affected and that it’s safe for hospitals to use other digital services provided by UnitedHealth and Optum, which include claims filing and processing systems.

But not many chief information officers “are jumping to reconnect,” Chaudhry said. “It’s an uneasy feeling.”

Miri says Baptist is using the conglomerate’s technology and that he trusts UnitedHealth’s word that it’s safe. Neither executive was sanguine about the future of cybersecurity in health care.

“It’s going to get worse,” Chaudhry said.

“It’s a shame the feds aren’t helping more,” Miri said. “You’d think if our nuclear infrastructure were under attack the feds would respond with more gusto.”

While the departments of Justice and State have targeted the ALPHV group, the government has stayed behind the scenes more in the aftermath of this attack. Chaudhry said the FBI and the Department of Health and Human Services have been attending calls organized by the AHA to brief members about the situation.

Miri said rural hospitals in particular could use more funding for security and that agencies like the Food and Drug Administration should have mandatory standards for cybersecurity.

There’s some recognition among officials that improvements need to be made.

“This latest attack is just more evidence that the status quo isn’t working and we have to take steps to shore up cybersecurity in the health industry,” said Sen. Mark Warner (D-Va.), the chair of the Senate Select Committee on Intelligence and a longtime advocate for stronger cybersecurity, in a statement to KFF Health News.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

A Guardian Angel Stronger Than Pain

By Cynthia Toussaint, PNN Columnist

What I’m going to write about I can’t fully explain. There was a time when I would have been skeptical of my own forthcoming words. 

But here goes…

I’m certain that I’m in touch with another plain of existence due to my pain. To be precise, it’s a person I deeply love, a person I was never blessed to meet.

My aunt Grace has always been bigger than life to me, an angel who I named my work for. Like me, she was in the vortex of monumental generational trauma, the bread and butter of our family.

Despite my grandmother disowning Grace, her oldest daughter, then having her only other child, my mother, kidnapped, and then her ex-husband, my grandfather, committed, Grace managed to keep her feet planted on the ground.

With grit and dogged determination, she ran Grandpa’s dairy farm, regularly brought food to my mother, who was being starved by my grandmother, and eventually got her father out of the asylum. That’s a lot on one pair of shoulders.

Grace paid the ultimate price for her goodness in the jaws of trauma when she died from leukemia at age 20 in 1947. I’ve always been compared to my sweet aunt, and even repeated the familial illness pattern when I got Complex Regional Pain Syndrome at the same age, ending my life in a different way.

When I was diagnosed with aggressive breast cancer in 2019 and told by my doctors that the toll of fixing my dysfunctional family was the cause of my cancer and decades of pain, I brought Grace into my daily rituals and meditations for comfort. I was in treatment hell, and her essence was safe and loving and healing. With time, I discovered that Grace was my guardian angel.

When I brought this seemingly illogical ritual up with a respected integrative medicine colleague, he advised that “Ancestral Healing” is a real thing, something Native American people have done for millennia. He went on to share, “You instinctively knew to go there, Cynthia, because healing their trauma will heal your own.”

Over the last year, my daily conversations with Grace became so intense, I began asking her to visit me at my condo. The love I felt for her was profound and reciprocated so strongly, I just had to have her near.

You see, 2023 was the worst year of my life. After fighting a cancer recurrence, complications left me in the hospital near death. Then I had ever-piling pain problems seemingly signed, sealed and delivered from a dark realm. This led to crushing isolation compounded by COVID protocols, as I feared its long version would end me. I desperately needed my angel. 

This is when things got inexplicable, straining the boundaries of human logic and reason.

It started dead of night Christmas morning. My partner, John, and I have a tradition of keeping a small, faux tree in our bedroom, and this year we added a ballerina snow-globe to our light show.

Somehow, though one ran on battery and the other via cord, they both turned off while we slept. After checking them, we turned them back on, only to witness them go off a second time simultaneously later that morning. Separate power sources, no timers, no condo power outage.

The first time was beyond baffling, the second time I just knew. Grace had accepted my invitation. Both light show objects went off as many times as I could turn them back on during the season, and it felt loving and magical to know Grace was with me.

During this time, John recalled an incident shortly before Christmas. He was in our condo plaza giving our kitty some outdoor time, when he distinctly heard a friendly young woman say, “Hello, John.” The weird part was that no one was there. He only later connected the dots.

When the dreaded day came to take Christmas decor down, I sobbed and John’s eyes welled. It felt like we were saying goodbye to Grace until next year. But the “miracles” kept rolling.

That night, to curb our loss, I put up a large butterfly nightlight (run by batteries) given to me by a close girlfriend for my New Year’s Eve birthday. You guessed it. The next morning it was off.  Then the next, and the next. No timer, even changed the batteries. As of this writing, my butterfly goes off up to five times a night.

Other mystical things have happened, too numerous to mention, though they include a tree-top vintage angel, another vocal communication from a young woman and the number 1111, which I’ve learned signifies the nearness of a guardian angel. I still speak intimately to Grace every day during my Ancestral Healing work and have no doubt she salved me through the worst year of my life. You see, Grace is stronger than pain.

What do I make of all of this? I asked Grace to come, and she did. Every day I ask her to come again, and she does. I think she’s made herself known because I was in the right place and space to receive her love. I needed her like no other time.

And having her here, watching over me, comforting me, guiding me, eases my body and soul. I feel blessed, like I’m absorbed in a healing light of well-being. I’ve gone from a life of illness and desperation to one of wellness and gratitude. I’m even pursuing passions I’d let go of for far too long. 

I’ve come to believe that the universe bestows other-worldly gifts upon those who experience great loss. I also believe we women in pain are more sensitive than others, which is, in part, why we have pain. But that sensitivity, that portal if you will, can bring us blessings more powerful than pain - if we are prepared to receive and believe.

He, she, it, they are ready to help, to guide, to ease. Seek the sacred and be open to its grace.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and multiple co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Dietary Supplements Need More Regulation

By Emily Hemendinger and Katie Suleta

Dietary supplements are a big business. The industry made almost $39 billion in revenue in 2022, and with very little regulation and oversight, it stands to keep growing.

The marketing of dietary supplements has been quite effective, with 77% of Americans reporting feeling that the supplement industry is trustworthy. The idea of taking your health into your own hands is appealing, and supplements are popular with athletes, parents and people trying to recover more quickly from a cold or flu, just to name a few.

A 2024 study found that approximately 1 in 10 adolescents have used nonprescribed weight loss and weight control products, including dietary supplements.

Notably, that systematic review found that nonprescribed diet pill use was significantly higher than the use of nonprescribed laxatives and diuretics for weight management. These types of unhealthy weight control behaviors are associated with both worsened mental health and physical health outcomes.

As a licensed clinical social worker specializing in treating anxiety disorders and eating disorders and a biomedical research director, we’ve seen firsthand the harm that these supplements can do based on unfounded beliefs. The underregulated market of dietary supplements is setting consumers up to be misled and potentially seriously harmed by these products.

Supplements Often Mislabeled

The Food and Drug Administration specifies that supplements must contain a “dietary ingredient” such as vitamins, minerals, herbs, amino acids, enzymes, live microbials, concentrates and extracts, among others.

Unfortunately, manufacturers can claim that a product is a supplement even when it doesn’t meet those criteria, such as products containing the drug tianeptine, a highly addictive drug that can mimic the biological action of opioids. Some of these products are labeled as dietary supplements but are anything but.

Products containing kratom, a substance with opioid-like effects, which are sold over the counter in many gas stations, claim to be herbal supplements but are mislabeled.

Under a 1994 law, dietary supplements are classified as food, not as drugs. This means dietary supplements are not required to prove efficacy, unlike drugs. Regulators also don’t take action on a product until it is shown to cause harm.

However, the FDA’s website states that “many dietary supplements contain ingredients that have strong biological effects which may conflict with a medicine you are taking or a medical condition you may have. Products containing hidden drugs are also sometimes falsely marketed as dietary supplements, putting consumers at even greater risk.”

In other words, supplements are regulated as food instead of drugs, even though they can interact with medications and may be laced with hidden drugs not included on the label.

Manufacturers of dietary supplements can make claims about their products that fall into three categories: health claims, nutrient content claims and claims about the product’s function, structure or both, all without needing to provide supporting evidence.

Misbranding and false advertising are rampant with dietary supplements, including false claims of curing cancer, improving immune health, improving cognitive functioning, improving fertility, improving cardiovascular health and, of course, promoting weight loss and weight control.

Hidden Dangers

You can find supplements that claim to be good for just about every health condition, concern or goal, so it should be no surprise that there are supplements marketed for weight loss.

In August 2021, the FDA cracked down on some of these weight loss products because of the presence of undeclared drugs. For example, of the 72 products recalled, the drug sibutramine, sold as Meridia, was found in 68 of them.

While the FDA may take further action beyond the recalls, the agency acknowledged that it is not able to test every weight loss supplement for contamination with drugs.

These crackdowns demonstrate some progress, though several issues remain. Warning label placement, ingredients and beliefs based on misleading or false advertising are still highly problematic.

Some weight loss supplements may have FDA warnings on them. Of those that do, the disclaimers are rarely displayed on the front of the product label, so consumers are less likely to see them.

Ingredients in weight loss supplements can and do have adverse effects. They have caused people to be admitted to the emergency room for cardiovascular and swallowing problems, including in young, seemingly healthy people.

Mental health concerns and eating disorders are on the rise. As a result, researchers are examining unhealthy weight control behaviors, including the use of dietary supplements and how accessible they are to adolescents and children.

People who have eating disorders often suffer related health issues such as bone loss, osteoporosis and vitamin deficiencies. In response, their doctors may prescribe dietary supplements like calcium, vitamin D and nutritional supplement shakes. But these are not the dietary supplements of concern. The concern is with supplements that promote weight loss, muscle building or both.

People with eating disorders may be attracted to dietary supplements that claim quick and pain-free weight loss or muscle gain. Additionally, dietary supplement users may struggle with an increase in compulsive exercise or other unhealthy weight control behaviors.

Diet pill and supplement use has also been associated with increased risk for developing eating disorders and disordered eating, as well as low self-esteem, depression and substance use. While dietary supplements do not solely cause eating disorders or disordered eating, they are one contributing factor that may be addressed with preventive measures and regulations.

Protein powders and other fitness supplements also have wide appeal. Research shows that girls are more at risk than boys for using weight loss supplements. But a growing problem in boys is the use of fitness supplements such as protein powder and creatine products, a compound that supplies energy to the muscles.

Use of fitness supplements sometimes signifies a preoccupation with body shape and size. For example, a 2022 study found that protein powder consumption in adolescence was associated with future use of steroids in emerging adulthood.

Protein powders make claims of building lean muscles, while creatine boasts providing energy for short-term, intense exercise.

Protein itself is not harmful at recommended doses. However, protein powders may contain unknown ingredients, such as certain toxins or extra and excessive sugar. They can also be dangerous when used in excess and to replace other foods that possess vital nutrients.

And while creatine can usually be safely used in adults, overuse can lead to health problems and is not recommended for minors. Ultimately, the impact of long-term use of these supplements, especially in adolescents, is unstudied.

Possible Solutions

One proposed regulation by researchers at Harvard University includes taxing dietary supplements whose labels tout weight loss benefits.

Another policy recommendation involves banning the sale of dietary supplements and other weight loss products to protect minors from these underregulated and potentially dangerous products.

In 2023, New York successfully passed legislation that banned the sale of these products to minors, while states including Colorado, California and Massachusetts have considered or are considering similar action.

Ultimately, medical professionals recommend that parents and caregivers encourage their children to get protein and vitamins from whole foods instead of turning to supplements and powders. They also recommend encouraging teens to focus on balanced nutrition, sleep and recovery, and a variety of resistance, strength and conditioning training.

Emily Hemendinger, LCSW, is an Assistant Professor of Psychiatry at University of Colorado Anschutz Medical Campus.

Katie Suleta is a PhD Candidate in Medicine and Health at George Washington University.

This article originally appeared in The Conversation and is republished with permission.

A Pained Life: Setting the Record Straight

By Carol Levy, PNN Columnist

Decades ago, my pain management doctor suggested that my family doctor write my codeine prescriptions. “Dr. Feld” had no problem doing so.

The last time that I saw Dr. Feld and asked for the prescription, he had me sign the opioid consent form and provide a urine sample. Then he called in the prescription to my pharmacy. No muss, no fuss.

Dr. Feld just retired, so I saw one of the new doctors in the practice. I was there for another reason but asked, “As long as I'm here, can you call in the codeine prescription?”

To my surprise, the new doctor said, “Yes, but I will only give you 30 milligrams, not the 60.”

“Dr. Feld has been giving me 60 milligrams for years.”

“Well, I won't. I'll only give you half the dosage.”

This was the first time the new doctor had seen me, so he knew little about me or my diagnosis. There were no questions about my level of pain, when I took the codeine, or why had I been taking it less often. Nothing. He decided I was going to get less and reality didn't matter. 

This jumping to conclusions seems to be pervasive. I had neuropsychological testing a few weeks ago. I was having some issues with recalling words and wanted to be assured all was well with my cognitive abilities.

When I received a copy of the report, I was upset. The doctor had couched many of the results in his preconceived notions about me, rather than reality. Some of it could have easily been rectified in the follow-up appointment, if he had bothered to ask. He could have asked why I seemed anxious throughout the testing or if I was depressed. Instead, he drew his own conclusions.

Missing from the report was the fact that I had to stop at one point during the test due to the pain. When I told the tester that I needed to take a pain pill, she told me they didn't want me to do that.

So yes, I was anxious for the rest of the test, not because I had anxiety but because I had pain and knew that each additional part of the test could well make the pain worse.

The depression he thought he found was in response to questions about my life circumstances. I checked yes to “Do you feel isolated?” and “I do not go out much.” That is my life circumstance, because of the pain. 

Understandably, many doctors are afraid to give us the opioids we have been on for years or to give us the same dosages. They’re afraid of the FDA. But I am also finding, in my singular experience, that it may be because they just don't care about our circumstances, our pain or the benefits that opioids provide, allowing many of us to have fuller lives.

It is not acceptable when our medical records contain falsehoods that are based on preconceived notions or the laziness of those who examine us.

When I went to the online portal to see my medical records, I noticed the doctor wrote about tests and exams he didn't do. The results for them were patently false, indicating I could do things like move my neck fully, which I am incapable of doing. I contacted him through the portal, telling him what he wrote was wrong. To his credit, he changed it.

At first, I didn't like the idea of a portal and too much personal information being online, even if it was behind a firewall. But now I find it is an excellent instrument for seeing if the doctor, nurse, or tester posted accurate results and if my records contain falsehoods.

We don't have a lot of power when it comes to what is put in our medical records, what is ignored, or flat out wrong. I used to think getting my records when they were on paper was not worth the effort, because there was no way to set the record straight. But now that I can read the reports online, I fell like I have been empowered to correct them.

We must take back as much power as we can. Take a moment and check your medical records. And, if necessary, tell them what they got wrong. 

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

Patients Should Know the Health Benefits of Ketamine, Not Just the Risks

By Drs. Amber Borucki and Rakhi Dayal 

Recent headlines about the death of “Friends” actor Matthew Perry have pointed to ketamine as a contributing cause. Perry drowned in his hot tub last October, which the medical examiner’s office attributed to the “acute effects of ketamine,” as well as coronary artery disease and the opioid buprenorphine.

With this news, the public became more familiar with a medication they may never have heard of previously.  Ketamine is a classified by the Drug Enforcement Administration (DEA) as a “dissociative anesthetic,” meaning that it can cause the user to feel disconnected and alter their perceptions of sight or sound. 

Ketamine is used in hospital or surgical settings for anesthesia purposes, for acute pain management, in the emergency room or intensive care, and in some cases for chronic pain management. A form of ketamine (esketamine) is also used to treat mental health conditions. 

Appropriate monitoring and medical supervision are necessary for safe ketamine use. While it is important to recognize the risks of this medication when used improperly, it is also important to make sure that people don’t become overly fearful of a drug that serves an important role in patient care when delivered properly by trained healthcare providers. 

When the news broke that Michael Jackson’s death was attributed to propofol, patients were suddenly concerned about the use of this drug in their anesthesia treatment. As physicians, it is our responsibility to make sure patients understand the proper and improper uses of medications, and that we help alleviate concerns through education. As with any treatment, we need to strike the right balance between providing information on the risks, while also communicating the benefits. 

While ketamine is in the spotlight and more stories are published about its use, it is important that we take a moment to provide greater clarity about this medication.  

What Is Ketamine?  

Ketamine is an anesthetic agent that was originally developed in 1963 and gained approval from the Food and Drug Administration (FDA) as a general anesthetic in 1970. It is well established that ketamine has tremendous clinical value in providing sedation and pain relief when patients undergo anesthesia, and can also be beneficial as part of a comprehensive pain management plan. More recently, the FDA approved a form of ketamine in a nasal spray for treatment-resistant depression.   

Ketamine is used for a variety of indications, with some being FDA-approved and some being considered "off-label" uses.  

• General anesthesia (FDA-approved): Ketamine can be used as part of a general anesthetic given for surgery, and in certain clinical situations is one of the preferred medications.  When ketamine is given by a trained anesthesia provider, it is a safe and effective part of the anesthesia regimen.     

• Acute pain (off-label): Ketamine can be given to treat pain after surgery or for other significant acute pain conditions. This is commonly done by providing a low-dose infusion of ketamine through an IV while a patient recovers in the hospital. Although this is considered "off-label” use, there are joint guidelines issued in 2018 by the American Society of Regional Anesthesia and Pain Medicine (ASRA), the American Society of Anesthesiologists (ASA), and the American Academy of Pain Medicine (AAPM) to guide safe use for acute pain.

• Chronic pain management (off-label): Ketamine for chronic pain is also considered "off-label" use, but there are also consensus guidelines by the ASRA, ASA and AAPM that discuss chronic pain clinical scenarios where research found ketamine to be beneficial. 

If a patient is considering the use of ketamine for chronic pain, it is important to understand what type of medical supervision is provided and by whom. Patients should consider seeking treatment from a physician who is board certified in pain medicine, as they have extra training in pain management. The use of ketamine for chronic pain should be part of a larger umbrella of comprehensive pain treatment strategies provided in a multidisciplinary care team model.

What Are the Risks of Ketamine?

Ketamine is classified a schedule III controlled substance by the DEA, and therefore has some addictive potential. Side effects include increased heart rate, high blood pressure, increased saliva production, blurry vision, dizziness, sedation, nausea, urinary symptoms, dissociation (out of body sensation) and respiratory depression. It can even cause hallucination at certain doses. 

Caution is advised when ketamine is used with other medications that have similar adverse effects, such as sedation, respiratory depression, confusion, and delirium. Medication interactions and overdose with ketamine can lead to unconsciousness, slowed breathing, and rare severe consequences such as death. 

The medical use of ketamine in general anesthesia under the medical supervision of a trained provider is generally considered safe. Off-label use of ketamine for acute and chronic pain also has established national guidelines for medical practitioners to follow. This treatment can provide pain relief to patients safely, when provided by a board-certified anesthesiologist or pain physician using proper monitoring and safety guidelines.

Unsupervised and non-medical use of ketamine, particularly when taken in combination with other sedating medications, can lead to adverse outcomes and even death, as we saw with Matthew Perry. We encourage patients to have conversations with providers about their treatment plan and to discuss any concerns they have about the medications they are prescribed.

Amber Borucki, MD, is an Associate Professor of Anesthesiology, Perioperative and Pain Medicine at Stanford University.

Rakhi Dayal, MD is Chair of the Pain Committee for the California Society of Anesthesiologists, and Program Director of Pain Medicine and Professor of Anesthesiology & Perioperative Care at University of California, Irvine.

Checking the Boxes: Why Therapy Was Not Helpful

By Mia Maysack, PNN Columnist

Living with persistent pain or chronic illness is enough to push anyone to the brink of insanity. I’ve reached out for mental health assistance in the past, and either regretted it or didn’t feel it was much help at all.

I later came to the realization that therapy could only ever be what we make of it, so I decided to release the disappointment from the past and give it another wholehearted try.

I learned that the therapy process, particularly since COVID-19, is a nightmare. The isolation of the pandemic helped us recognize the importance of mental health, along with the fact that there’s a shortage of providers. It’s now nearly impossible to find a therapist.

It’s even more difficult to come across one that is accepting new patients and whatever insurance you might or might not have. I spent the better part of a year researching, making phone calls and being told no, before I finally came across a situation that seemed promising.

After providing extensive documentation exploring every aspect of my life and then playing the waiting game to get the green light from insurance, I was finally able to move forward with scheduling an appointment at a clinic. It would have been many more months before I could be seen in-person, so I settled for a virtual appointment.

I was happy to connect with a provider, who initially seemed warm and caring. Little did I realize how short lived this would be.

During our conversation, we covered the basics. I attempted to explain how anyone who lives the way that I do must experience some form of depression or sadness, but that doesn’t necessarily mean that I always feel that way. I don’t feel a need to label people as “sad” or “depressed,” for I believe there’s a wide spectrum we all exist on. We can allow ourselves to feel sad or anxious in any given moment, without necessarily committing to that experience permanently.

Prior to this therapy session, I’d been participating in a behavioral health program where a provider would call once every few weeks for a momentary check-in. Being that I had no other support at that time, I was thankful for the resource and couldn’t help but imagine what different points in my life would’ve been like had something like that been available then.

I’m under the impression this check-in option was cultivated during the pandemic in an attempt to alleviate the mental health stress that so many of us were having.  It’s more of a band-aid than anything else, but slowing the emotional bleeding can be the difference between life or death for many.

I remember having a pleasant conversation with someone who reached out. We chatted for about a half hour as they listened to some of my health-related goals, then advised me they’d have someone follow up to ensure the plan was proceeding smoothly.  

At the very last second, they requested I complete a survey -- one that I’d done countless times already: the PHQ-9 questionnaire.  It asks how you were feeling in the last two weeks and to rate your experiences on a numeric scale.  Was I tired? Feeling hopeless? Eating enough? Eating too much? Was I thinking of hurting myself?

Ending the phone call on such a note turned an otherwise enjoyable and productive conversation into a traumatic reminder of the ways I’d been struggling. Then the session was over and I was on my own again.

On the next call, I offered feedback -- mentioning the survey should come sooner in the conversation and empower the patient to choose when they’d complete it or even not take it. That should be my right and my choice.

I was advised that the survey was part of the process of getting a diagnosis. The therapist said this wasn’t so much the clinic’s way of doing things, but rather “served insurance purposes.” That rubbed me the wrong way.

Here I was, absolutely desperate for therapy, but instead of receiving actual help, I was reminded once again that the most important thing for a provider is to collect patient data. With a heavy heart, I chose to end my pursuit of counseling. It feels harmful and unsafe to be reminded that “checking the boxes” is prioritized over the quality of human life.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

The Emergency Room Quandary

By Carol Levy, PNN Columnist

I went to the ER only once because my pain was so out of control. The nurses and the doctor were nice, but mostly I was ignored. After waiting what seemed like hours, a nurse came to my bedside with a needle.

"Hold out your arm," she said and injected me with... something. She didn't say what it was.

The pain was so overwhelming, I didn't ask. Whatever it was, it did nothing, not even make me drowsy.

They kept me there for a few more hours, offering nothing after the injection but a cursory, "Sorry it didn't help you" and "Maybe rest will help."

After another hour or so, I left. They were of no help. They could be of no help.

I used to work as an emergency room ward clerk, the first person people saw when they came in. I would run back to get a doctor or nurse if a patient had one of three complaints: chest pain, symptoms of a kidney stone, or a migraine. Those patients were immediately taken to an exam room.

All the other patients I signed in, then directed them to the waiting room. “Please have a seat and wait for your name to be called,” I’d tell them.

Often, they would sit for hours watching as others who came in were immediately taken to the exam room. I had to repeatedly explain that other patients' complaints were more serious and they had to be seen first.

Some of those waiting patients became angry. They had no clue how many patients were already in the exam rooms, or if the doctors and nurses were dealing with critically injured patients from auto accidents or others with serious health issues.

The ones who came in with complaints of “I have a cold” or “I hurt my finger 3 weeks ago” went to the bottom of the list. So too did those whose main complaint — such as chronic pain — was not of immediate concern. It may have seemed like an emergency to them, but to the ER staff it often isn't. An emergency room can never operate on a first come, first serve basis.

Often, as chronic pain sufferers, we have trouble finding doctors or pain management specialists who are willing to take us as patients. Without a doctor we are vulnerable. When the pain gets too bad or feels uncontrollable, our only alternative may be the ER.

The problem with that is the emergency room is not going to help us much, if at all. They don't know our history. They don't know us. When a patient says they don’t have a doctor and insists on getting opioid pain medication, they immediately become suspect. They might be an addict trying to cadge an opioid.

We are so mired in the “opioid crisis” that it blinds us to the other issues that are harming us. We need to look at all the issues that make us vulnerable. Being able to find a doctor should be high on the list of what we need to fight for.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

What Money Can’t Buy

By Mia Maysack, PNN Columnist

Just about everyone I've encountered has commented on their lack of cheer over the holiday season. I can relate to that in my own way, but also think we put too much pressure on ourselves to be appropriately cheerful when the calendar tells us to be.

I have been disheartened by the fact society presents the holidays as a joyous time, when they really seem to be more of an excuse to spend more than we should and consume more than we need.

This often results in people being rude in stores or driving recklessly, as if their lives are more important than anyone else's. We fixate on what we want or lack -- as opposed to what others may need. The holiday spirit should be less about us and more about what we can do for others.

Some of us are without our loved ones-- not just during the holidays, but literally every day. In the very house or apartment next to yours, there could be someone silently suffering. On our own streets, people are homeless or starving as we rush by them, too busy to care. On the other side of the world, there are innocent people effectively being wiped out via genocide.

I think it's absolutely okay that we are not all that jolly. In fact, if we were, there would be something extraordinarily wrong with that. This isn't to belittle anyone feeling joyful, it's solely a matter of keeping things in perspective.

Please take time in the new year to enjoy this opportunity to love yourself and appreciate those around you. If you are working, understand that your job is the dream of the unemployed. Reflect on what you've made it through and accomplished -- even if all you managed to do was live another year and survive.

Do something small to lift yourself up -- whether its fresh air, listening to music, making a tasty dish, or volunteering or donating in a meaningful way for another person.

There will come a day when the only things you long for are those that money can’t buy. There will be times when you'd give anything to revisit the past that came and went so quickly.

The only item on our holiday wish lists should be more time – time to optimally utilize the gifts we already have and to make the most of life while we still can.

Sending prayers to all of you for a safe, healthy and gentle 2024.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

Health Misinformation Rampant on Social Media

By Dr. Monica Wang, Boston University

The global anti-vaccine movement and vaccine hesitancy that accelerated during the COVID-19 pandemic show no signs of abating.

According to a survey of U.S. adults, Americans in October 2023 were less likely to view approved vaccines as safe than they were in April 2021. As vaccine confidence falls, health misinformation continues to spread like wildfire on social media and in real life.

I am a public health expert in health misinformation, science communication and health behavior change.

In my view, we cannot underestimate the dangers of health misinformation and the need to understand why it spreads and what we can do about it. Health misinformation is defined as any health-related claim that is false based on current scientific consensus.

False Claims About Vaccines

Vaccines are the No. 1 topic of misleading health claims. Some common myths about vaccines include:

• Their supposed link with human diagnoses of autism. Multiple studies have discredited this claim, and it has been firmly refuted by the World Health Organization, the National Academies of Sciences, Engineering and Medicine, the American Academy of Pediatrics and the Centers for Disease Control and Prevention.

• Concerns with the COVID-19 vaccine leading to infertility. This connection has been debunked through a systematic review and meta-analysis, one of the most robust forms of synthesizing scientific evidence.

• Safety concerns about vaccine ingredients, such as thimerosal, aluminum and formaldehyde. Extensive studies have shown these ingredients are safe when used in the minimal amounts contained in vaccines.

• Vaccines as medically unnecessary to protect from disease. The development and dissemination of vaccines for life-threatening diseases such as smallpox, polio, measles, mumps, rubella and the flu has saved millions of lives. It also played a critical role in historic increases in average life expectancy – from 47 years in 1900 in the U.S. to 76 years in 2023.

High Cost of Misinformation

Beliefs in such myths have come at the highest cost.

An estimated 319,000 COVID-19 deaths that occurred between January 2021 and April 2022 in the U.S. could have been prevented if those individuals had been vaccinated, according to a data dashboard from the Brown University School of Public Health. Misinformation and disinformation about COVID-19 vaccines alone have cost the U.S. economy an estimated US$50 million to $300 million per day in direct costs from hospitalizations, long-term illness, lives lost and economic losses from missed work.

Though vaccine myths and misunderstandings tend to dominate conversations about health, there is an abundance of misinformation on social media surrounding diets and eating disorders, smoking or substance use, chronic diseases and medical treatments.

My team’s research and that of others show that social media platforms have become go-to sources for health information, especially among adolescents and young adults. However, many people are not equipped to maneuver the maze of health misinformation.

For example, an analysis of Instagram and TikTok posts from 2022 to 2023 by The Washington Post and the nonprofit news site The Examination found that the food, beverage and dietary supplement industries paid dozens of registered dietitian influencers to post content promoting diet soda, sugar and supplements, reaching millions of viewers. The dietitians’ relationships with the food industry were not always made clear to viewers.

Studies show that health misinformation spread on social media results in fewer people getting vaccinated and can also increase the risk of other health dangers such as disordered eating and unsafe sex practices and sexually transmitted infections. Health misinformation has even bled over into animal health, with a 2023 study finding that 53% of dog owners surveyed in a nationally representative sample report being skeptical of pet vaccines.

Declining Trust

One major reason behind the spread of health misinformation is declining trust in science and government. Rising political polarization, coupled with historical medical mistrust among communities that have experienced and continue to experience unequal health care treatment, exacerbates preexisting divides.

The lack of trust is both fueled and reinforced by the way misinformation can spread today. Social media platforms allow people to form information silos with ease; you can curate your networks and your feed by unfollowing or muting contradictory views from your own and liking and sharing content that aligns with your existing beliefs and value systems.

By tailoring content based on past interactions, social media algorithms can unintentionally limit your exposure to diverse perspectives and generate a fragmented and incomplete understanding of information. Even more concerning, a study of misinformation spread on Twitter analyzing data from 2006 to 2017 found that falsehoods were 70% more likely to be shared than the truth and spread “further, faster, deeper and more broadly than the truth” across all categories of information.

The average kindergarten student sees about 70 media messages every day. By the time they’re in high school, teens spend more than a third of their day using media.

How to Identify Misinformation

The lack of robust and standardized regulation of misinformation content on social media places the difficult task of discerning what is true or false information on individual users. We scientists and research entities can also do better in communicating our science and rebuilding trust, as my colleague and I have previously written. I also provide peer-reviewed recommendations for the important roles that parents/caregivers, policymakers and social media companies can play.

Below are some steps that consumers can take to identify and prevent health misinformation spread:

• Check the source. Determine the credibility of the health information by checking if the source is a reputable organization or agency such as the World Health Organization, the National Institutes of Health or the Centers for Disease Control and Prevention. Other credible sources include an established medical or scientific institution or a peer-reviewed study in an academic journal. Be cautious of information that comes from unknown or biased sources.

• Examine author credentials. Look for qualifications, expertise and relevant professional affiliations for the author or authors presenting the information. Be wary if author information is missing or difficult to verify.

• Pay attention to the date. Scientific knowledge by design is meant to evolve as new evidence emerges. Outdated information may not be the most accurate. Look for recent data and updates that contextualize findings within the broader field.

• Cross-reference to determine scientific consensus. Cross-reference information across multiple reliable sources. Strong consensus across experts and multiple scientific studies supports the validity of health information. If a health claim on social media contradicts widely accepted scientific consensus and stems from unknown or unreputable sources, it is likely unreliable.

• Question sensational claims. Misleading health information often uses sensational language designed to provoke strong emotions to grab attention. Phrases like “miracle cure,” “secret remedy” or “guaranteed results” may signal exaggeration. Be alert for potential conflicts of interest and sponsored content.

• Weigh scientific evidence over individual anecdotes. Prioritize information grounded in scientific studies that have undergone rigorous research methods, such as randomized controlled trials, peer review and validation. When done well with representative samples, the scientific process provides a reliable foundation for health recommendations compared to individual anecdotes. Though personal stories can be compelling, they should not be the sole basis for health decisions.

• Talk with a health care professional. If health information is confusing or contradictory, seek guidance from trusted health care providers who can offer personalized advice based on their expertise and individual health needs.

• When in doubt, don’t share. Sharing health claims without validity or verification contributes to misinformation spread and preventable harm.

All of us can play a part in responsibly consuming and sharing information so that the spread of the truth outpaces the false.

Monica Wang, ScD, is an Associate Professor of Community Health Sciences at the Boston University School of Public Health and an Adjunct Associate Professor of Health Policy and Management at the Harvard T.H. Chan School of Public Health. She receives funding from the National Institutes of Health.

This article originally appeared in The Conversation and is republished with permission.