Bitter Rivals: Kratom’s Three-Ring Circus

By Pat Anson

In recent years, you’ve probably come across stories about kratom, an herbal supplement used by millions of Americans for pain relief and to help manage conditions such as anxiety and depression. 

While the vast majority of consumers use kratom safely, there is growing concern about outlier cases where kratom is abused or has even been associated with overdoses. 

That has led to several states and dozens of cities and counties banning natural leaf kratom or a potent, concentrated kratom alkaloid called 7-hydroxymitragynine (7-OH). In some cases, they’re banning both.

Less well known is that the growing controversy over kratom is being fueled, in part, by an ongoing turf war between three rival industry-funded advocacy groups. Or, to use another cliche, a three-ring circus.

In one ring is the American Kratom Association (AKA), an organization of kratom manufacturers and vendors that sell natural leaf kratom products. 

In another ring is the Holistic Alternative Recovery Trust (HART), which represents 7-OH manufacturers like American Shaman. 

In the third ring is the Global Kratom Coalition (GKC), which was founded by JW Ross, who made a fortune selling a popular kratom-kava shot called “Feel Free.” 

Like the AKA, the GKC favors natural leaf kratom, and takes a pugnacious approach to critics and competitors. The GKC likens rival 7-OH products to “powerful prescription opioids” that should be banned or heavily regulated. 

You would think the AKA and GKC would be on the same team, since they both want to keep natural leaf kratom legal and accessible. But they are bitter rivals.

In an open letter, AKA chairman Matt Salmon claimed that GKC founder Ross is actually Jerry Cash, a convicted embezzler, who is trying to “make the AKA look bad” by misstating its position on kratom product formulations.

Salmon, a former congressman, also accused the GKC of launching a smear campaign against Mac Haddow, an AKA lobbyist who had his own run-ins with the law. Salmon’s letter is nearly three years old, but helps explain what is happening today.

“The most recent attacks against AKA and the personal attacks on Mac Haddow came after several ambush interviews orchestrated by Mr. Ross and his PR team providing incomplete, mischaracterized, and demonstrably false information to reporters,” said Salmon.

Kratom vs 7-OH

All three kratom groups accuse each other of jeopardizing what has become a lucrative business opportunity: selling an herbal supplement that is still largely unregulated by the federal government. Currently estimated to be worth over $2 billion, the global kratom industry is projected to grow to nearly $8 billion by 2032.

The latest example in this turf war is a self-styled “consumer alert” by the AKA warning about the “growing proliferation of dangerous products” containing 7-OH and other synthetic products made from kratom.   

“Consumers deserve to know the truth,” said Haddow, Senior Fellow on Public Policy for the AKA, in a press release. “These 7-OH products are not traditional kratom. They are being engineered, concentrated, and marketed in ways that create risks that are not associated with natural kratom leaf.” 

As evidence, the AKA cites lab results commissioned by the Texas Attorney General, which found that several 7-OH products contain alkaloid concentrations that exceed safety limits under state laws modeled after the Kratom Consumer Protection Act (KCPA) – legislation that the AKA has lobbied Texas and 20 other states to enact.    

One such product, Opia 7-OH tablets, contain over 16mg of 7-OH – which is 96% of their total alkaloid content – well above the 2% limit under the KCPA.  

AKA IMAGE

Critics of the KCPA say the law is misleading, doesn’t protect consumers, and is designed primarily to protect the financial interests of the AKA and other vendors who sell natural leaf kratom.    

Not surprisingly, the AKA disagrees. It wants 7-OH scheduled as a controlled substance and a ban on 7-OH being marketed as “kratom” –  moves that would preserve the legal status of natural leaf kratom.

“This is not a debate about kratom,” says Haddow. “This is about stopping a new class of unregulated, opioid-like substances from being disguised as something they are not.” 

The Holistic Alternative Recovery Trust takes issue with the portrayal of 7-OH as a dangerous opioid.

“7-OH is not a synthetic substance or a novel additive, it is a naturally occurring alkaloid found in the kratom leaf itself. Calling it anything else misrepresents the science,” a HART spokesperson said in a statement to PNN.

“This is part of a broader pattern we’ve seen from the American Kratom Association and the Global Kratom Coalition, misrepresenting the science in ways that benefit certain segments of the market, particularly whole-leaf producers, while dismissing or sidelining millions of consumers who rely on 7-OH products.”

‘Kratom Is an Opioid’

The AKA’s latest attack on 7-OH comes on the heels of the GKC’s endorsement of a bill in Congress that would target “lab-made opioids” by amending the Controlled Substance Act to include 7-OH as a Schedule One substance, in the same category as heroin.

The association with opioids is a bit of a canard, but it makes for a good headline. Kratom comes from the leaves of the Mitragyna speciosa tree, which has more in common with coffee than it does with poppy plants, from which opioids such as heroin are produced. 

Like kratom, coffee and other comfort foods such as chocolate stimulate endorphin nerve receptors and have mild “feel good” effects. You might even say they have “opioid-like” effects. But that doesn’t make Hershey’s Kisses opioids or Mrs. Olson a drug dealer.  

Squabbling over the safety of each other’s products has not benefited kratom consumers and has contributed to sensational reporting about kratom and 7-OH causing addiction and overdoses. 

The latest example appears in The Conversation, which commissioned Dr. Andrew Kolodny to write an op/ed about kratom. Kolodny is the founder and president of Physicians for Responsible Opioid Prescribing (PROP), an influential anti-opioid activist group. 

Kolodny used a misleading CDC study about calls to poison control centers to paint a misleading portrait of kratom as just another opioid.

“For now, the evidence shows that kratom is an opioid with real risks – not a harmless supplement,” wrote Kolodny, while shamelessly ignoring his own role in restrictions on the use of opioid medication, which led to greater use of kratom. “Kratom’s rising use over the past decade coincided with the opioid crisis, as people searched for alternatives to prescription opioids.

“Some in the kratom industry argue that only newer products with boosted levels of 7OH are dangerous. But the evidence does not support that claim. Deaths linked to kratom were already rising before the newer 7OH products appeared on the market in late 2023.”  

The three kratom advocacy groups – who all favor limited regulation – would be wise to consider that demonizing each other’s products only contributes to state after state and city after city enacting kratom bans. 

“There are legitimate concerns in the marketplace, particularly around inconsistent products, unclear labeling, and lack of transparency. Those issues deserve attention. Consumers should know exactly what they are purchasing through clear labeling, verified third-party testing, and honest disclosure of potency and contents,” says HART.

“But the solution is not to single out or ban one compound based on flawed narratives. Policymakers should instead focus on enforceable manufacturing standards and practical safeguards, such as milligram-per-serving limits, standardized labeling, and quality controls, rather than arbitrary caps that risk eliminating products people currently rely on.”

Last summer, the FDA said it would ask the DEA to have 7-OH – but not whole leaf kratom – classified as an illegal Schedule One controlled substance.

The DEA, which doesn’t even mention kratom or 7-OH in its most recent National Drug Threat Assessment, has yet to move forward on the FDA’s request. Perhaps federal agencies are just as divided about kratom as kratom advocates are.

EDS Means a Life Filled With Ankle Sprains

By Crystal Lindell

I sprained my ankle again last week. If you have ever sprained your ankle, you know that swearing is more than warranted. 

After stepping on a crack in our driveway, my stupid goddamn left foot just immediately rolled right under me. Within seconds, it was the size of a baseball. 

I have spent the last few days doing RICE: Rest, Ice, Compression, Elevation. The bruises that developed have spread, making it look like I stepped in navy paint. 

I wish I could say it was the first time I sprained my ankle, but I have hypermobile Ehlers Danlos Syndrome (EDS). As such, I’ve been spraining my ankle on a regular basis since high school. I even have my own personal stash of crutches and ankle wraps always at the ready. 

The first time it happened, I was practicing a dance routine in socks on a wooden floor at my high school and – WHACK! — I hit the ground.

Another time, I tripped off the edge of a sidewalk.

I have also fallen down a flight of stairs; landed wrong during a jump sequence in my Jazzercise class; and face-planted while running into a Target store to shop.  

Just because it happens a lot though, doesn’t mean it hurts any less. The day after it happened this time, I could barely get myself to the bathroom, as the pain radiated through my body into my chest. And that was with pain meds! It was hell. 

Until recently, I always blamed myself for these falls. I thought I was just careless when I walked. I thought, somehow, I got distracted when I was going down steps. I figured that I should have worn better shoes. That I shouldn’t have been practicing a dance routine in socks.

I genuinely thought that I was an idiot.

I’ve also lost count of how many times someone accused me of spraining my ankle for attention. I don’t know how that would even work, but logistics don’t stop people from being cruel.

Anytime I needed crutches or a day off school or work to recover, I was also accused of being lazy, overdramatic or a wimp. 

But then on March 15, 2018, I was diagnosed with hypermobile EDS by a doctor at the University of Wisconsin-Madison.

While he was evaluating me he said, “I bet you sprain your ankles a lot, huh?”

“Ummm. Yes!  How did you know?”

“Well,” he said. “Your ankles bend way past the point where they should, so if they go just a little bit further, BAM! They just roll right under. And then you sprain them.”

It’s difficult to explain the emotions that come with such a revelation. I couldn’t believe there was finally a reason beyond “I’m bad at walking.”

It turns out, my ligaments just don’t work the way they are supposed to.

It wasn’t just ankle sprains that my EDS diagnosis shed light on. Another symptom of EDS is that I bruise much easier than other people. 

It doesn’t bother me much, but it did really bother the doctor I saw at the women’s health clinic in grad school, years before my diagnosis. She was certain that my body being covered in bruises meant that I was being abused by my then-boyfriend. She tried multiple times to get me to open up to her and call the abuse hotline. 

I most certainly was NOT being abused though. Not a single bruise had come from him. Thankfully, that doctor never involved the authorities without my consent.  

Unfortunately, that’s not the case for many parents who are wrongly accused of abusing their undiagnosed EDS children for the same reason though, i.e. lots of bruises. It’s just one reason that refusing to diagnose kids with EDS or their genetically connected parents can have very dangerous consequences. 

There’s a lot of discussion these days about whether or not it’s worth it to be diagnosed with EDS. A lot of doctors think it’s being over-diagnosed, claiming patients just want the label for attention or some other vague reason.

I’m in a different camp though. I think EDS is still exponentially under-diagnosed. There is value in understranding our bodies, and that’s what a diagnosis like EDS brings. After all, we can’t cope or treat things that we refuse to even name. 

I suspect that many of my family members also have EDS. While most haven’t had the resources to get their own diagnosis, mine was enough for them to start understanding. It helped shed light on the things that their own bodies have always done. Many of them have come to realize that their injuries and pain were also not their fault.  

Hypermobile EDS is a very real condition, with very real physical markers, and very real symptoms. It causes very real pain. 

Patients have a right to know when they have it – just like they have a right to know that they have any other medical condition. Any doctor who believes otherwise shouldn’t be working in medicine. 

As for my ankle, it’s slowly getting better. The swelling has gone down significantly, and I’m hoping that within the next couple days I’ll be able to fully walk on it. Now my goal is to just make it through the rest of 2026 without another sprain.

Ohio Nursing Homes Dump Patients at Homeless Shelters

By Crystal Lindell

A woman at a Columbus, Ohio nursing home who was suffering from a painful leg fracture, diabetes, and other health problems was dumped by the staff at a homeless shelter because she drank a beer in her room.

That’s according to a 2023 inspector’s report by the Centers for Medicare and Medicaid Services (CMS), which found other disturbing incidents of Ohio nursing homes discharging older and medically fragile residents to homeless shelters.  

The Columbus nursing home, Eastland Rehabilitation and Nursing Center, told CMS it tried to get the woman into a rehabilitation program for substance use but they couldn’t find a bed. 

At the time of her discharge, she was using a walker, incontinent, and carrying a large bag of medications, according to a news report from Ohio-based Signal. 

And the story only gets worse.

The nursing home staff didn’t even bother to call the homeless shelter ahead of time to let them know that they were dropping her off. So when they left her at the homeless shelter, staff there initially refused to take her in “leaving her outside in the late-summer heat." They said they had their own 100-person-long waiting list.

According to the CMS inspector, “The [homeless shelter] staff member revealed Resident #83 was unclear of what was going on, scared, and not sure who dropped her off there.”

Eventually the homeless shelter let her into the lobby, gave her a glass of cold water and allowed her to come inside, while they called the fire department and a social worker. 

But after that, her story just… ends. None of the people involved have since been able to track her down. Administrators at Eastland did not return phone calls about the incident, according to the Signal. 

It’s a truly disgusting tale. And anyone who deals with chronic pain or other health issues should sympathize with the woman.

Medicare gives Eastland just two out of five stars in its nursing home ratings system, which is considered below average. The facility, which gets only one star for “health inspections” and “staffing,” has been fined four times over the last few years for over $300,000. 

It’s not a one-off situation either. CMS has faulted Eastland and six other Ohio nursing homes in the last few years for discharging residents to homeless shelters.

“We are starting to deal with it more and more. The facilities are so closely monitored on discharges, but yet they still try and send them to hospitals and not take them back. Or drop them off at homeless shelters,” Chip Wilkins, who heads Dayton’s Long Term Care Ombudsman program, told the Signal. 

It’s inhumane and upsetting that the only consequences the nursing homes seem to face for such a cruel act was a fine. It’s not nearly enough to deter them from doing it again. 

It’s tempting to believe that people like Resident #83 are in some outlier group. As though such a situation could never happen to you or me or someone we love. 

But the scenario is indicative of how some nursing homes treat their patients. It can happen when a resident behaves aggressively, has a substance use problem, or even if they lose their Medicare or Medicaid coverage. If you can’t pay your bills or cause too much trouble, you’re out.

Personally, I’m lucky enough to have family who I can live with now, and I’m also lucky enough that my health issues have not yet required skilled nursing care. But I’m well aware of my deteriorating body and how easily I too could end up in such a situation.

We are supposed to be human beings. We are supposed to care for each other. It shouldn’t matter if Resident #83 was drinking three 24-packs of beer a day. She still deserved medical care. All of us do.

Unless we start truly regulating medical providers to force them to actually care for their patients, situations like this will only get more common. And one day, it could happen to us or someone we love.

I have thought about Resident #83 many times since first reading the Signal article last week. I hope that she found somewhere to go. That some distant relative took her in, or that she was able to get a bed in a hospital or a different nursing home. But I know that the most likely outcome is that she died, alone and scared. 

It’s horrifying and it should never be allowed to happen.

DOJ Legalizes Medical Marijuana But Stops Short of Rescheduling Cannabis

By Pat Anson

In a major shift in U.S. drug policy, the Department of Justice is legalizing medical marijuana at the federal level by moving it from an illegal Schedule I controlled substance to a less restrictive Schedule III status, which allows for some medical use. Medical marijuana is most commonly used to treat pain, anxiety, insomnia and other health conditions. 

The move by Acting Attorney General Todd Blanche affects medical marijuana sold under qualifying state issued licenses and a handful of FDA-approved drugs containing synthetic marijuana. It also makes it much easier for researchers to study cannabis and for cannabis companies to develop new products for medical use.

“The Department of Justice is delivering on President Trump’s promise to expand Americans’ access to medical treatment options,” Blanche said in a statement. “This rescheduling action allows for research on the safety and efficacy of this substance, ultimately providing patients with better care and doctors with more reliable information.”

Medical marijuana is already legal in 40 states and the District of Columbia, and 24 of these states and DC have also legalized recreational cannabis for adult use.

Blanche’s order stops short of legalizing recreational cannabis, which remains in the Schedule I category – for the time being. Hearings will begin this summer to consider rescheduling all cannabis from Schedule I to Schedule III. Until then, federal criminal laws still apply and interstate trafficking of cannabis remains illegal. 

"While today's move is a historic step forward, it still falls well short of the comprehensive changes necessary to bring federal marijuana policy into the 21st century. Specifically, rescheduling fails to fully harmonize federal marijuana policy with the cannabis laws of many states, particularly the 24 states that have legalized its use and sale to adults," said Paul Armentano , Deputy Director of NORML, a marijuana advocacy group. 

"In order to rectify this state/federal conflict, and in order to provide state governments with the explicit authority to establish their own cannabis regulatory policies — like they already possess with respect to alcohol — cannabis must be removed from the Controlled Substances Act altogether." 

Blanche’s order also removes federal tax penalties from state-licensed marijuana dispensaries and operators, which inflated prices and restricted how businesses could operate financially. Many dispensaries are unable to get loans and can only accept cash payments because banks are reluctant to do business with them. 

"This change levels the playing field and lowers these entities’ costs of doing business," Armentano said. "This change also likely benefits patients by resulting in lower overall prices for state-licensed retail medical products."

Rescheduling Slow Walked

Some marijuana advocates say the DOJ order doesn’t go far enough, and that federal agencies continue to slow walk meaningful reform. 

“We should be clear-eyed about what this is and what it is not,” said Betty Aldworth, Chair of The Marijuana Policy Project. “Rescheduling is a step in the right direction, not a solution. It does not resolve the fundamental contradictions between federal and state law.

“It does not protect people from the legal consequences of cannabis use embedded in housing, immigration, employment, or family law. And it does not create a pathway for patients to access cannabis through insurance coverage, even when it may be safer or more effective than legal options.”

It was President Biden who initiated the rescheduling process four years ago, when he told the Department of Health and Human Services (HHS) to review the scientific evidence on cannabis and make a recommendation for rescheduling. 

It took HHS nearly a year to complete its review, but further action was delayed by DOJ and DEA decisions to postpone public hearings until after the 2024 presidential election. 

Last week, four months after signing an executive order instructing his administration to reschedule cannabis, President Trump was still complaining about how slow the process was.

“Will you get the rescheduling done, please?” Trump asked a federal health official. “They’re slow-walking me on rescheduling. OK, you’re going to get it done, right?”   

The FDA has already approved four synthetic marijuana drug products: Epidiolex (cannabidiol), Marinol (dronabinol), Syndros (dronabinol), and Cesamet (nabilone). They require a prescription and are used to treat seizures, nausea, vomiting, and loss of appetite in select patients.

Combining Opioids With a Cannabis-Based Medicine Doesn’t Add to Pain Relief

By Pat Anson

Combining a low dose of opioids with a cannabis-based medicine did not improve acute pain for people with arthritis, according to results of a small clinical study published in the journal Anesthesiology.

Animal studies have suggested that the two drugs might have a synergistic effect and provide better pain relief, but the study of 21 people with knee osteoarthritis found no added benefit. 

“Some patients believe combining cannabis with opioids can help with pain, and clinicians may recommend or prescribe it in states where cannabis is legal,” said lead author Katrina Hamilton, PhD, a Psychiatry Professor at Johns Hopkins School of Medicine. “Our study suggests that isn’t the case and patients may experience more side effects when the drugs are combined.”

There are some important caveats to the study that diminish its findings.

One is the design of the study and its small size – just 21 patients – who received placebo pills, hydromorphone alone, dronabinol alone, and a combination of hydromorphone and dronabinol. 

Participants received all four combinations prior to having pain induced by sticking their hands in cold water or having their skin rubbed with a “hot” capsaicin cream. That means the researchers were evaluating acute pain induced in a laboratory, not the chronic pain caused by arthritis.

Second, dronabinol (Marinol) is not cannabis. Dronabinol is a synthetic version of THC, the active ingredient in cannabis. It is FDA-approved to treat nausea and vomiting in chemotherapy patients, and to improve appetite in AIDS patients. Dronabinol was never intended to provide pain relief and has little in common with the various forms of cannabis (edibles, smoking, vaping) used in the real world. 

Third, while hydromorphone is a potent opioid, the oral dose (2 mg) that was used is relatively low – about 10 morphine milligram equivalents (MME). The research team had previously conducted a similar study using 4mg of hydromorphone. That also produced little pain relief for participants, so it’s not surprising that 2mg didn’t help either, although researchers say the lower dose has a “better safety profile.” 

The researchers found that taking hydromorphone and dronabinol, either alone or in combination, did not provide significant relief from acute pain. The opioid alone reduced pain sensitivity, while dronabinol did not, but neither meaningfully reduced participants’ self-reported pain.

When the two drugs were combined, side effects such as drowsiness, dizziness and impaired thinking were stronger and more noticeable, but without added pain relief.

“Opioid and cannabinoid medications failed to produce robust analgesia in experimentally induced pain among patients with knee osteoarthritis. In contrast to preclinical studies, there was no evidence of synergistic analgesic effects by combining hydromorphone and dronabinol,” researchers concluded.

While the dose of hydromorphone was low, the 10mg dose of dronabinol that was used in the study is a hefty amount. Interestingly, participants reported more of a “high” sensation from the dronabinol than from hydromorphone. But again, dronabinol is a synthetic version of cannabis and has little in common with what most cannabis consumers use.    

“In the real world, people often use cannabis differently, including lower starting doses, using gradually stronger doses, which may affect both benefits and side effects,” said Hamilton, acknowledging the limits of her study. “More research is needed to better understand how cannabis affects pain when used in real-world settings.”

Physical Therapy Provides Only Modest Relief For Chronic Lower Back Pain

By Pat Anson

Physical therapy, cognitive behavioral therapy (CBT), and mindfulness are often recommended as non-pharmacological treatments for chronic lower back pain. The World Health Organization even calls them first-line treatments in a 2023 guideline for low back pain that discourages the use of most pain medications. 

But which therapy works better?

A new study, published in the Annals of Internal Medicine, found that physical therapy provides minor improvement in physical function for patients with chronic low back pain, but no change in pain intensity compared to CBT and mindfulness.

A research team led by the University of Utah enrolled 749 adults with chronic low back pain (cLBP) to compare the effectiveness of physical therapy with other non-pharmacological treatments.

Participants were randomly assigned to 8 weeks of either physical therapy or CBT. Those who did not improve were reassigned to a second treatment, either switching therapies or trying mindfulness-based care for another 8 weeks.

The physical therapy was provided by licensed therapists, while mental health care professionals provided CBT and mindfulness training. CBT is a form of psychotherapy, in which a therapist works with a patient to reduce unhelpful thinking and behavior; while mindfulness focuses on increasing awareness and acceptance of physical discomfort to minimize its impact on daily life.

After 10 weeks, participants who started with physical therapy showed a small improvement in function, while pain levels were similar between groups. After one year, no meaningful differences were seen among the second-stage treatments. 

The findings suggest physical therapy (PT) may be a reasonable first option for chronic low back pain, but switching or adding other psychological therapies may not change long-term outcomes.

“We found some benefits to PT as the first treatment offered to patients, but we could not detect subgroup differences and effect sizes were small. Our results support PT as a first-line option for cLBP and no differences in potential benefits of second-line care with mindfulness or switching for nonresponders,” researchers concluded.

The study does not mean that CBT and/or mindfulness are ineffective, just that their impact is minor. That finding is similar to another recent study of patients with chronic low back pain, which found that CBT and mindfulness reduced pain levels by about 10% after a year. 

That’s nice, but not the kind of pain relief most people are looking for. 

Chronic low back pain is the leading cause of disability worldwide. It usually begins with acute pain caused by muscle strain or musculoskeletal injuries, and becomes chronic over time when it fails to resolve. Chronic low back pain mostly affects adults of working age in lower socioeconomic groups, who often have physically demanding jobs.  

For such a common disorder, affecting about 500 million people at any given time, there is little consensus on how to treat it. 

A 2018 review in The Lancet by an international team of researchers found that cLBP is often treated with bad advice, inappropriate tests, risky surgeries and painkillers. The authors said there was limited evidence to support the use of opioids for chronic low back pain, and epidural steroid injections and acetaminophen (paracetamol) were not recommended at all.

Medical Cannabis Significantly Reduced Use of Opioids and Other Rx Drugs

By Pat Anson 

A new survey of cannabis users in Germany found a significant reduction in their use of painkillers, sleep medications, anti-depressants and other prescription drugs after starting medical cannabis treatment.

Over 3,500 cannabis patients participated in the online survey, published by Bloomwell, which found an average 84.5% decrease in the use of medications overall. Over half of respondents (58.9%) said they stopped taking at least one medication completely.

The reduced consumption of prescription drugs led to a corresponding change in side effects. Over 60% of patients said they no longer had any medication-related side effects, while nearly 38% said their side effects were reduced. 

Less than 2% said their side effects remained the same or intensified after they started using medical cannabis.

“Cannabis is often portrayed as dangerous and addictive, even though the most severe side effects and addiction potential have only been proven with other prescription medications,” said Julian Wichmann, MD, co-founder and CEO of Bloomwell, one of the leading providers of medical cannabis in Europe.

The reduced use of prescription drugs was associated with major improvements in quality of life and productivity. Most patients reported better concentration (67.8%), more social interactions (61.9%), and fewer days of missed work (53.9%) after they started using medical cannabis.

“Patients benefit significantly when they are able to replace other prescription drugs with medical cannabis. The often completely absent side effects are also associated with a marked improvement in quality of life and work performance. This is likely the most important finding of our survey,” said Wichmann.

The steepest reduction in the use of a prescription drug class was for sleep medications; 93.6% were able to reduce their use of sleeping pills by at least half, and 75.5% were able to discontinue them completely. 

Patients who took the stimulant methylphenidate (Ritalin) reported an average reduction of 88.4% after starting medical cannabis, while 77.3% were able to discontinue it completely. 

Patients were able to reduce their use of opioids by an average of 83.9%, while 61% were able to completely discontinue opioids.

That finding mirrors those of other studies in the US and UK. 

A large 2022 survey of medical cannabis users in Florida found that those who have chronic pain were able to reduce or even stop their use of opioids. Patients reported less pain and better physical and social functioning once they started using medical cannabis. 

A recent survey of UK adults prescribed medical cannabis for anxiety, depression, insomnia, PTSD and other mental health conditions found that 97% said it improved their well-being and happiness, while 68% said it enabled them to work.

Germany first legalized medical cannabis in 2017, allowing patients with certain medical conditions to access it with a prescription. In 2024, the German Narcotics Act declassified cannabis as a narcotic and allowed adults to possess and cultivate limited amounts for recreational use.

According to Bloomwell, cannabis reforms in Germany have led to significant reductions in the price of cannabis flowers and an increase in cannabis prescriptions.  

Vertanical, a German pharmaceutical company, hopes to soon get regulatory approval in Europe and the UK for the first cannabis-based medicine for chronic pain. In clinical trials, the full spectrum cannabis extract provided better pain relief for low back pain in a head-to-head comparison with low doses of opioids.

Psilocybin Is Going Mainstream, but Research and Regulation Lag

(Editor’s Note: President Trump has signed an executive order directing his administration to speed up the review of psychedelic drugs. Although the order focuses on treating mental health conditions, psychedelics such as psilocybin mushrooms have shown promise as treatments for chronic pain.)

By Hollis Karoly and Kent Hutchison

Amid a renaissance in the science of psychedelics, public interest in psilocybin – or magic mushrooms, as they’ve long been known – is surging.

One study found that rates of psilocybin use increased 44% among adults ages 18-29 from 2019 to 2023, and 188% among those over age 30. This amounts to more than 5 million adults using psilocybin in 2023 alone. And those numbers are rising: A study published in early 2026 found that about 11 million adults in the United States used psilocybin in the previous year.

In many ways, the growing scientific and public interest in psilocybin mirrors the early days of recreational cannabis legalization in the U.S. Much like how cannabis commercialization quickly outpaced the development of regulations necessary to protect public health, the expanding psilocybin market and surging public interest are moving faster than the science and regulations needed to ensure it is used safely.

We are substance use researchers who have spent more than a decade studying the many new, high-THC cannabis products that have flooded the legal-market.

Now, we similarly aim to bridge the gap between public enthusiasm for psilocybin and the limited scientific evidence available about its potential benefits and risks. Currently, this type of real-world data on the effects of psilocybin mushrooms is almost nonexistent.

How Do Psilocybin Mushrooms Work?

Psilocybin is a prodrug, which means that it has very low activity until the body converts it into psilocin. Psilocin is the compound primarily responsible for the psychoactive effects of psilocybin mushrooms.

Psilocin resembles the chemical messenger serotonin, which is involved in regulating a range of physiological and psychological functions, including mood, appetite, cognition and sensory perception. As a result, when psilocin binds to serotonin receptors, it alters how people think, feel and experience the world.

Importantly, research suggests that psilocin also alters the brain’s ability to strengthen or weaken neural connections, referred to as synaptic plasticity. This process likely underlies the profound and sometimes long-lasting effects psilocybin mushrooms can have on thoughts, emotions and perception.

Psilocybin mushrooms contain numerous other compounds, together known as tryptamines, such as baeocystin, norbaeocystin and aeruginascin. Research on rodents shows that mushrooms containing these compounds may elicit stronger and longer-lasting effects than psilocybin alone.

But very little is known about how these other tryptamines affect humans. This is because federal regulations require researchers to use an isolated, synthetic version of psilocybin in clinical studies rather than the entire mushroom.

Thus, the many ongoing clinical trials testing psilocybin as a treatment for various mental health conditions use synthetic psilocybin that does not contain these other tryptamines.

A Legal Gray Area

Psilocybin is more accessible than ever before.

In 2019, Denver, Colorado, became the first American city to decriminalize psilocybin mushrooms. This means that possession becomes the lowest law enforcement priority and criminal penalties are reduced or eliminated, but it does not fully legalize them.

Over the next two years, several other U.S. cities including Oakland and Santa Cruz, California; Seattle, Washington; and Detroit, Michigan, followed suit. In 2020, Oregon legalized psilocybin for supervised use in licensed settings, and Colorado did the same in 2022. These legal, supervised-use programs allow access to psilocybin mushrooms in regulated environments without a prescription.

Even for people living outside those states and cities, the barriers to accessing psilocybin mushrooms are low. With a quick Google search and around US$35, anyone can legally purchase kits containing the materials needed to grow psilocybin-containing mushrooms.

These kits are legal to buy and sell because they contain only mushroom spores, which are tiny reproductive cells from which mushrooms grow. Once these spores begin growing into mushrooms, they can produce psilocybin, making the mushrooms a federal Schedule 1 substance.

Because psilocybin mushrooms exist in this legal gray area and are governed by different rules across states, psilocybin mushrooms are essentially unregulated across most of the U.S.

As a result, consumers lack reliable information about what their mushrooms contain, how much they should take and how to use them safely.

Psilocybin Potency Is Increasing

Much like the cannabis industry, which has seen a steady increase in product variety and product strength since legalization, the psilocybin mushroom market is experiencing rapid growth.

For instance, psilocybin edibles are now available and increasingly popular.

In addition, selective cultivation practices are being used by individual and commercial growers to systematically increase the amount of psilocybin contained in their mushroom strains. For example, the Oakland Hyphae Cup, a community contest intended to identify the best mushroom strains, has shown wide variability in psilocybin content across samples.

Researchers are identifying a similar pattern of widely variable psilocybin content in scientific studies of psychedelic mushrooms from around the world.

Potential Harms of Psilocybin

Despite psilocybin’s therapeutic promise, it also carries risks. Psilocybin can cause headaches, nausea, dizziness and changes in blood pressure.

Less commonly, some people experience psychotic symptoms, suicidal thoughts, anxiety, paranoia, confusion or emotional distress.

Another serious potential side effect of psychedelic drugs is what’s known as hallucinogen persisting perception disorder. It involves ongoing perceptual distortions similar to those experienced while directly under the influence of psilocybin, which can persist for weeks, months or years, even once the psilocybin has left the body.

Harms are more likely when people take high doses.

As mushroom potency increases without market regulation, consumers may inadvertently ingest more psilocybin than intended, increasing the risk of harm. Without sufficient research on modern psilocybin products, consumers have little guidance on how to reduce potential harms.

Next Steps in Research and Regulation

Studying psilocybin in the real world requires creative research approaches.

Our team hopes to work within federal restrictions to study people using their own psilocybin mushroom products at home, while providing real-time data to our research team using app-based surveys.

Independent laboratories using state-of-the-art measurement techniques can aid researchers like us by providing information about the potency of the mushroom products that people are using.

While ongoing clinical trials provide important data about the effects of psilocybin under tightly controlled conditions, real-world data is needed to understand how modern psilocybin mushrooms are used and experienced by consumers.

These insights matter not only for scientists and policymakers but for the growing number of people trying psilocybin mushrooms for relief, self-improvement or out of curiosity. In a largely unregulated market, and with few clear guidelines on safe use, consumers are left to simply figure it out on their own.

Hollis Karoly, PhD, is a clinical psychologist, neuroscientist and Associate Professor of Psychiatry at the University of Colorado Anschutz Medical Campus. Her research is funded by the National Institutes of Health.

Kent Hutchison, PhD, is a Professor of Psychology and Neuroscience at the University of Colorado in Boulder and the Founder of the Center for Research and Education Addressing Cannabis and Health. His research is also funded by the National Institutes of Health.

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

Getting a Second Opinion From a Doctor Isn’t Always Practical

By Crystal Lindell

The first thing I did when I started dealing with debilitating chronic pain was go to the emergency room. The second thing I did was follow up with a local primary care physician.

But when nothing improved after a few months and multiple appointments with the doctor, I did what I had always been told to do in such a situation: I sought out a “second opinion.”

Alas, the second doctor wasn’t any help either. Neither were the third, fourth, or fifth.

If you’re dealing with any sort of complex health issue, odds are high that you’ve also had a bad experience with a doctor. Perhaps they dismissed your symptoms, refused to treat your pain, or maybe they were just plain mean.

A common refrain from healthy people in such a situation is: “Just get a second opinion.”

It comes across like common sense, especially in a consumer-culture where it’s smart to shop around. And while I wouldn’t advise against getting a second opinion – I have obviously done it myself on many occasions – there are some very important warnings that need to be included here.

One, getting a second opinion is both expensive and time consuming – assuming it’s even possible in the first place.

You can’t just leave your doctor’s office, walk next store and ask for a different doctor. You have to call around, find someone willing to take your insurance, and hope to get an appointment sometime in the next six months.  A lot of people, understandably, just don’t have the resources for such a task, especially when they aren’t feeling well.

Plus, when you do finally get in to see them, there’s a good chance they won’t be any help. So, you’re just out the time, the money, and the energy it took to get to their office.

Not to mention the fact that if you live in a rural area, a second opinion could be next to  impossible. There are many places in the United States where there literally is no second doctor within 100 miles to opine. 

Personally, I spent thousands of dollars traveling around the Midwest seeking out second opinions – including two fruitless trips to the Mayo Clinic. In the end, I was left with insurmountable medical debt and medical system burnout.

While I was eventually diagnosed with Ehlers-Danlos Syndrome, that did not happen because I sought a second opinion. It happened because multiple readers emailed me to suggest I look into it, so I brought it up to my doctor, and they sent me to a specialist to confirm it. 

Second opinions don’t just drain you though. There’s another, more hidden aspect to them as well. 

If you go to a different doctor to get a second opinion, you could be accused of something called “doctor shopping.”

The term is specifically used to dismiss patients who seek out second opinions, and most commonly, pain patients. 

It’s a code doctors use to frame a patient's desire for a second opinion as an effort to “score” opioid pain meds like a criminal.

Of course, in real life, if you’re actually dealing with horrible pain and the doctor you see is refusing to treat it, it makes total sense to look for a physician who will treat it. Any human in that situation would do the same thing. Pain refuses to be ignored. 

But common sense is not a factor if you are given the label of “doctor shopping” in your chart. Such a note will be used to dismiss all of your pain going forward.

Plus, in the age of easily transferable electronic health records, once anything like that gets put in your file, every doctor you visit will likely see it. 

So, while it’s entirely understandable that loved ones will often advise their sick family and friends to get a second opinion if they aren’t finding relief or answers from their doctor, it’s important to remember that it’s not always that simple. 

Of course, in a perfect world, patients wouldn’t even need to worry about second opinions, because the first doctor they saw would be kind, thorough and effective. We don’t live in that world though, so patients are left to navigate a lot of imperfect choices.

Doctors More Likely to Use Negative Terms for Sickle Cell Patients

By Crystal Lindell

Sickle cell patients are more likely than other patients to have negative descriptions in their medical charts, such as “noncompliant” and “noncooperative,” according to a new study published in JAMA Network Open.

The results are concerning because prior research has shown that such descriptors make doctors less likely to aggressively treat pain, a common symptom of sickle cell disease. The genetic disorder causes red blood cells to form in a crescent or sickle shape, which creates painful blockages in blood vessels. About 100,000 Americans have sickle cell disease, primarily people of African or Hispanic descent.

Researchers at the University of Chicago used artificial intelligence to analyze electronic health records and clinician notes for over 18,000 adult patients. They looked for seven negative words in patient charts: aggressive, agitated, angry, nonadherent, noncompliant, noncooperative, and refuse.

The descriptive words for sickle cell patients were then compared to those of four other groups without sickle cell disease: Black patients, patients diagnosed with chronic pain, patients diagnosed with opioid use disorder (OUD), and non-Black patients. 

They found that patients with sickle cell disease had higher odds of having negative descriptions than Black patients, non-Black patients and patients with chronic pain, but had similar odds of negative descriptors as patients with opioid use disorder. Non-Black patients had the fewest negative descriptors than the other patient groups.

Black patients with sickle cell disease, chronic pain, and OUD had the highest frequency (19%) of negative descriptors in their medical notes.

The researchers said their findings suggest there is bias against patients with sickle cell disease, particularly when opioids are involved.

“Although patients with sickle cell disease routinely use opioid medications to manage their chronic pain, the vast majority do not have an opioid use disorder,”  said senior author Monica Peek, MD, a Professor for Health Justice at University of Chicago Medicine. 

“It is a testament to the strength of their character that they do their best to live full lives while managing debilitating pain with the minimum amount of medication. And yet, within health professions and society as a whole, there is a persistent bias that stereotypes these patients primarily as ‘drug-seekers’ rather than regular people managing a chronic disease.”

The bias and stigma have real life consequences: If a doctor or nurse sees negative descriptors in a patient’s chart, they are less likely to effectively treat their pain.

When it comes to terms like “noncompliant,” the issue can be a bit of a chicken-egg situation — it’s difficult to know what came first. 

Prior research has shown that patients with sickle cell disease who experience discrimination in health care are less likely to follow physician recommendations. These same patients may then be labeled as “noncompliant,” which could perpetuate discriminatory behavior against them. 

The researchers said that clinicians should work to understand why a patient may not want to take a medication or has trouble adhering to treatment, and then adjust their treatment plan to support the patients from there. And they should avoid using negative terms in patient charts.

People With Chronic Pain Are Almost Twice As Likely to Smoke

By Pat Anson 

Cigarette smoking in the U.S. has fallen dramatically over the last few decades, from 45% of the adult population in the 1960’s to less than 10% in 2024. The decline was steep and across the board for both men and women, and for every age group.

But while fewer Americans are smoking overall, the rate of decline is much slower for people with chronic pain, according to a new study.

“We know that cigarette smoking rates overall are going down, which is good,” says co-author Jessica Powers, PhD, an Assistant Professor of Psychology at the University of Kansas. “But what these results show is that the decline isn’t happening as fast for people with chronic pain. People with chronic pain are about twice as likely to smoke cigarettes and to use other types of tobacco products, including e-cigarettes, and to use multiple products together.”

Powers and her colleagues analyzed a decade of smoking data from the National Health Interview Survey, which monitors the health of the U.S. population through face-to-face interviews with 27,000 adults every year. 

Their findings, recently published in the American Journal of Preventive Medicine, show that cigarette smoking among individuals with chronic pain declined marginally from 17.7% in 2014 to 13.1% in 2023. Smoking rates actually increased among chronic pain sufferers who use e-cigarettes.

“We’re seeing a lot of data showing that those with chronic pain are much more likely to use tobacco — cigarettes, e-cigarettes and other types of nicotine or tobacco products,” Powers explained in a news release.

The 13.1% smoking rate for people living with chronic pain is almost double the 7.5% rate for people who don’t have pain. The smoking rate is even higher for people with more frequent or disabling pain.

The study did not examine why people with chronic pain are more likely to smoke, but there are two likely reasons: 

One is that smoking provides a pleasurable distraction from pain and serves as a coping mechanism. The other is that nicotine helps reduce pain signalling. 

“We know pain drives tobacco use. Tobacco has short-term pain-relieving properties, so a lot of people find it helpful in the moment, but it actually causes negative effects in the long term. Tobacco smoking can actually make pain worse,” said Powers. “People get caught in this really vicious cycle where pain is driving smoking, smoking makes the pain worse, which makes it really hard to quit.”

Previous studies have also shown a strong association between smoking and chronic pain. A large UK study in 2020 found that smoking has a long-lasting effect on pain, even after people quit. Former smokers reported higher levels of pain than people who never smoked, and their pain levels were similar to current smokers.

Studies have also found that smoking increases your chances of having some chronic pain conditions, such as degenerative disc disease, fibromyalgia, back pain, and neck pain.

Many Women Suffer from Chronic Pain After Mastectomies

By Brett Kelman and Amy Maxmen, KFF Health News

Three weeks after Sophia Bassan’s mastectomy, she felt a stabbing pain beneath her right armpit. In the following months, painful shocks radiated through her chest and back. Her body became so sensitive that at times she couldn’t wear a shirt or lift a fork to her mouth.

Bassan slept sitting up because it hurt to lie down, and she would flinch at the slightest touch.

“I remember thinking I was losing my mind,” said Bassan, 43. “One time I was in so much pain that I had to take off my top, and then my cat’s tail brushed against my back. I screamed.”

Mastectomies are lifesaving surgeries that remove a patient’s breasts to treat breast cancer, which affects 1 in 8 American women over their lifetimes, according to the American Cancer Society.

Some women also undergo mastectomies as a preventive measure after a genetic test shows they have an increased risk for breast cancer.

In the months following surgery, many women are afflicted by post-mastectomy pain syndrome, or PMPS, which spans from uncomfortable to disabling and can last years.

Yet PMPS is inconsistently diagnosed and treated, leaving women like Bassan in agony as they hunt for relief and struggle to find doctors who take their pain seriously, according to a KFF Health News review of peer-reviewed research studies and interviews with pain specialists, surgeons, patients, and patient advocates.

Another problem is that PMPS is poorly defined, which contributes to the wide range of estimates for how common it is, reaching as high as more than 50% of mastectomy patients, according to studies. Even the low-end estimates, around 10%, would amount to tens of thousands of women.

PMPS care could improve if lawmakers pass the Advancing Women’s Health Coverage Act, which was introduced in October to ensure insurance coverage after breast cancer treatment, including preventive mastectomies. 

The bill, which does not mention PMPS by name, covers complications including chronic pain. More research would help, but pain research has long been fractured across several medical specialties and, more recently, has been undermined by the administration of President Donald Trump, who last year proposed deep cuts to research funding at the National Institutes of Health. After Congress rejected those cuts earlier this year, the White House slowed the release of NIH grant money, hindering ongoing and future scientific research.

“I’ve known women who’ve had chronic pain — itching, burning, stabbing pain — for years after mastectomies,” said Kathy Steligo, an author of multiple books on breast cancer who said she has spoken with hundreds of patients. “Of all the problems, that is probably the one least talked about by surgeons.”

Four mastectomy patients interviewed by KFF Health News told similar stories. In separate interviews, patients said their presurgery consultations did not raise the possibility of post-mastectomy pain syndrome, although each said they had signed forms that may have disclosed the chance of this complication. All said that they felt blindsided by the chronic pain, and some said their doctors dismissed their symptoms.

“Women don’t know about this, and when they have complications, the doctors act like it is so rare, like they’re so baffled,” Bassan said. “But this is statistically predictable.”

Jennifer Drubin Clark, 42, struggled with pain after her mastectomy in 2018, and it worsened after reconstructive breast surgery in 2019.

But her surgeon seemed to focus only on the appearance of her breast implants, she said.

“I couldn’t play the piano. I wanted to blow-dry my hair, but I couldn’t hold my arm above my head for more than two seconds. I couldn’t hold my kids,” Clark said. “Everything made me cry.”

Pain Often Dismissed

Breast cancer survival rates have steadily increased since the 1980s thanks to improved cancer screening, genetic testing, better treatments, and a rise in mastectomy surgeries.

Post-mastectomy pain syndrome is a consequence of that success, according to recent research papers from anesthesiologists at Baylor University in Texas and surgeons in Chicago and New York. Both papers called for an increased focus on PMPS so that breast cancer patients can not only live longer but live well.

“In the past, when concern was predominantly on patient survival, this pain was often considered acceptable,” plastic surgeons Jonathan Bank and Maureen Beederman wrote in a 2021 paper, adding that mastectomies and other breast surgeries “should be considered truly successful only if patients are pain-free.”

Treatment for post-mastectomy pain has a long way to go, said anesthesiologist Sean Mackey, who leads the pain medicine division at Stanford University. Mackey said this “undertreated” condition has no consistent definition for diagnosis, no standardized screening, and no treatment approved by the Food and Drug Administration.

Even the name is a misnomer, Mackey said, since the same pain can arise among women who’ve had other procedures, including lumpectomies and lymph node surgeries.

“The condition was historically dismissed,” Mackey said. “Basically women were told: ‘You’re lucky to be alive. Some pain is expected. Suck it up and deal with it.’”

“That attitude has been slow to change,” he said.

Bank, a New York surgeon who founded a clinic focused on post-mastectomy pain, said the pain is believed to be triggered by nerves that are severed during surgery and then left that way.

The nerves can be sutured back together to minimize pain, Bank said, but most breast surgeons haven’t been trained to do this. So it is not surprising, he said, that some patients say their surgeons were dismissive of their pain after mastectomies.

“When doctors don’t have an answer or don’t know the solution, the easiest thing to do is say there is no problem,” Bank said.

PMPS has been documented among cancer patients since the 1970s. Although the condition does not have an official definition, many researchers describe it as frequent pain in the chest, shoulder, arm, or armpit lasting at least three months after surgery.

‘Angelina Jolie Effect’

Mastectomies intended to prevent breast cancer have become more common among women with elevated risks, including genetic mutations and a family history of the disease.

Bassan’s grandmother died of breast cancer when she was 40. After her father died of cancer in 2023, a genetic test showed that she was at risk. Grieving and afraid, Bassan sought a preventive mastectomy without hesitation, she said.

Bassan said she was also inspired by actor Angelina Jolie, who disclosed her own preventive mastectomy in a 2013 column in The New York Times. Her account had such a significant impact on rates of genetic testing and preventive mastectomies that medical researchers have studied what they call the “Angelina Jolie effect.”

“I was really swayed by that,” Bassan said. “She made it sound, in a way, quite effortless.”

The aftermath of Bassan’s surgery was far worse than she expected. Using a computer for hours triggered paralyzing pain, so she lost her job and has been out of work for more than a year.

Prescription pills dulled the pain but left her in a fog, she said. Desperate, she consulted with multiple doctors until one suggested a nerve stimulation machine, which provided fleeting relief.

About nine months after her mastectomy, a breast reconstruction surgery lessened Bassan’s pain, although she said it still returns in occasional waves.

Even though her surgeries were covered by insurance, Bassan estimated her pain has cost her more than $200,000 in lost wages and drained savings.

SOPHIA BASSAN

“I did not expect to pay this price to have this surgery,” Bassan said. “I don’t know if it was worth it.”

Other women have no real choice.

No ‘Gold Standard’ Solution

Jeni Golomb, 48, was diagnosed with stage 2 cancer in both breasts in 2023 and had a double mastectomy as soon as she could.

Doctors made boilerplate disclosures of possible complications, Golomb said, but she never heard the words “post-mastectomy pain syndrome” until after she had it.

Golomb now manages her chronic pain by taking 1,500 milligrams a day of gabapentin, an anti-seizure drug that can also be used to treat nerve pain. Golomb said she expects to take the drug for years. If she misses a dose, her pain comes roaring back.

“It was the worst pain I ever felt,” Golomb said. “I labored to 10 centimeters, unmedicated, with one of my children, and that was not as bad as this. It was excruciating.”

Gabapentin has proved effective at helping some mastectomy patients with stubborn pain, while others have responded to electrodes implanted in their spinal column, according to the Baylor study, published in 2024.

But that study also said there is “no current gold standard” for how to treat post-mastectomy pain and a scarcity of high-level evidence for what treatments are effective.

Baylor anesthesiologist Krishna Shah, who co-authored the report, said many patients eventually find a helpful treatment, but it often takes “a bit of trial and error” to identify what works for each.

And sometimes they never find it.

Susan Dishell, 67, said that after her 2017 mastectomy for breast cancer and reconstruction surgery, she struggled for five years with pain in both shoulders, plus a burning sensation that her medical records identified as nerve pain.

Another surgery swapped out her breast implants to erase her shoulder pain in 2022, Dishell said, but doctors warned her then that her other pain was unlikely to improve.

Since then, she has tried prescription drugs, steroid injections, CBD oil, acupuncture, physical therapy, and chiropractor treatments.

None of it worked, she said, so she stopped trying.

“I have not slept through the night since I’ve had this,” Dishell said. “But it’s OK. It’s not the most terrible price to pay to not have breast cancer.”

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

Researchers Say Opioid Risk Tool Has ‘Too Many False Alarms’

By Pat Anson

The use of artificial intelligence (AI) continues to grow in healthcare, with patient health data and behavior increasingly being used to assess whether a patient is at risk of an illness or chronic health condition.

NarxCare and Epic, for example, scan electronic health records and prescription drug databases to create Opioid Risk Scores (ORS) for patients, which are then shared with healthcare providers to flag patients at risk of opioid misuse or an overdose. Patients deemed to be at high risk may not be able to get a prescription for opioids or they may be abandoned as “too risky.”

But a new study – the first of its kind – suggests that using opioid risk scores to predict patient outcomes is flawed, with unacceptably high rates of false positives.   

The study, recently published in the Journal of General Internal Medicine, looked at Epic’s opioid risk scores for over 700,000 U.S. patients being treated by primary care providers. The vast majority of patients (99.6%) were classified as low risk, with only 0.4% considered at high risk of an overdose or OUD.

It’s reassuring to see so many patients deemed low risk. But how accurate is the risk score in predicting patient outcomes? 

Of the 702,099 patients deemed low risk, only 2,177 went on to have an overdose or OUD diagnosis within the next 12 months. That means the system correctly predicted outcomes 99.7% of the time.

Conversely, of the 2,665 patients deemed high risk, only 185 later had an overdose or OUD diagnosis. That means Epic’s scoring system correctly predicted outcomes only about 7% of the time. 

Researchers say the false positive rate of 92.2% in the high risk category means that Epic’s ORS “produces too many false alarms” and is of little value to providers.  

“In this study, most high-risk patients were false positives, and most who developed OUD or overdosed were false negatives. Because these outcomes are rare, achieving adequate PPV (the proportion of cases that are accurate) is challenging. The ORS’s misclassification could undermine its external validity, leading to misallocated resources and missed interventions,” wrote lead author Stephanie Hooker, PhD, a Research Investigator at HealthPartners Institute.

“Missed interventions” in this case could mean a patient being denied opioid medication or being referred to addiction treatment, when neither move is justified.

On the flip side, Epic’s 99.7% success rate in identifying low risk patients also isn’t foolproof. 

Of the 2,362 patients who experienced an overdose or OUD diagnosis, Epic’s system flagged only 185 of them as high risk — which suggests that over two thousand were incorrectly labeled as “low risk.”

Maybe the lesson here is that “low risk” doesn’t mean no risk, and “high risk” doesn’t provide any certainty either.  

Pain management expert Dr. Lynn Webster says no opioid risk score — whether Epic’s or NarxCare’s – should be viewed as authoritative by doctors and pharmacists in making clinical decisions.     

“Both tools can be harmful if used punitively. The NarxCare scores have shown that overestimated risk may lead to forced tapering, abandonment, or other punitive responses, which could paradoxically increase overdose risk. With Epic, the harm is a bit different: the score can both stigmatize flagged patients and falsely reassure clinicians about the much larger group labeled low risk,” said Webster, a Senior Fellow at the Center for U.S. Policy (CUSP).

In 2023, CUSP petitioned the FDA to take Narxcare’s ORS software off the market as an unproven and misbranded medical device. The FDA rejected the petition on procedural grounds. 

In the case of Epic’s ORS, Webster says it is a mistake to count OUDs and overdoses in the same prediction model because they are distinct events. Someone can overdose without having OUD, while someone can have OUD without ever experiencing an overdose.   

“Opioid risk tools will always struggle to predict overdose death risk because overdoses can occur in patients who have no opioid use disorder and no aberrant drug-related behavior,” Webster told PNN. “Some patients overdose even when they take their medications exactly as prescribed. Overdose can also occur because of comorbid medical conditions or other factors unrelated to OUD.”

As flawed as they might be, Epic and NarxCare are already embedded in the U.S. healthcare system. Data on over 190 million patients has been collected by Epic’s MyChart software, while NarxCare is used by Walmart, Rite Aid, CVS and other major pharmacy chains to analyze patient risk.

“Whether the score comes from NarxCare or Epic, the core danger is the same: once a proprietary risk label is embedded in the chart, it can take on a false authority that changes how patients are treated,” says Webster.

Long Covid May Increase Risk of Heart Disease

By Pia Lindberg, Artur Fedorowski and Axel Carl Carlsson

Most people who get COVID recover within a few weeks. But for some, symptoms persist for months – a condition now known as long COVID. While it’s often associated with fatigue, breathlessness and “brain fog”, growing evidence suggests it may also affect something less visible, but potentially more serious: the heart.

In our recent study, we found that people with long COVID had higher risk of developing cardiovascular disease – including cardiac arrhythmias, heart attack and heart failure. Importantly, the increased risks were seen in people who had never been hospitalised during their initial COVID infection.

Much of the early research on long COVID and heart health focused on patients who were hospitalised, particularly those treated in intensive care. These patients often had multiple risk factors for cardiovascular disease such as being overweight and having hypertension or diabetes. This made it difficult to separate the effects of severe acute illness from the long-term effects of the infection.

However, the majority of people who had COVID were never admitted to a hospital – yet many still developed chronic symptoms of so-called long COVID. To explore the potential risks in this much larger group, we focused specifically on patients who had experienced a mild-to-moderate COVID infection which they managed at home.

We used healthcare data from more than 1.2 million adults living in Stockholm, Sweden. Among them, 9,000 were diagnosed by a doctor with long COVID. We then followed up these patients over time and compared occurrence of new cardiovascular disease – including heart attack, heart failure, arrhythmias, stroke and peripheral arterial disease – with people who did not have long COVID and had no previous cardiovascular disease.

After a follow-up period of up to four years, cardiovascular disease was more common among people with long COVID.

Among women with long COVID, 18% experienced some form of cardiovascular event, compared with 8% of women without long COVID. Among men, the corresponding figures were 21% versus 11%.

These results did not substantially differ even when we adjusted analyses for age, socioeconomic status and underlying health status – including conditions such as high blood pressure, diabetes, high cholesterol, obesity, depression, smoking and alcohol consumption which are known risk factors of cardiovascular disease.

Women with long COVID had more than double the risk of developing cardiovascular disease overall compared with women without long COVID, while men had around a 30% higher risk.

The strongest associations were seen for irregular heart rhythm and coronary heart disease. In women, we also observed an increased risk of heart failure and peripheral arterial disease. However, we did not find an association between long COVID and stroke risk.

Why Long Covid Might Affect the Heart

It’s not fully understood why long COVID is associated with cardiovascular disease, but several biological mechanisms have been proposed.

The virus can affect the lining of blood vessels, leading to what is known as endothelial dysfunction. It may also trigger long-lasting inflammation and changes in the immune system. Together, these processes can affect how blood flows through the body and how the heart functions.

There’s also growing evidence that long COVID can disrupt the autonomic nervous system – the automatic mechanisms that control heart rate and blood pressure. This may potentially explain why irregular heart rhythms and conditions such as postural orthostatic tachycardia syndrome (Pots) are more common in long COVID patients.

Another possibility is that long COVID may not necessarily cause entirely new disease, but rather reveal underlying conditions that had not yet been diagnosed. In some cases, symptoms such as chest pain or palpitations may lead to further medical evaluation, increasing the likelihood that cardiovascular disease is detected.

Our findings suggest that long COVID is not simply a transient condition, even among people who were never severely ill during the acute infection. Instead, it may have longer-term implications for cardiovascular health.

At the same time, it’s important to put the results into context. The overall risk of cardiovascular disease remains relatively low at the population level. But the relative increase in risk is meaningful and comparable to that seen with established cardiovascular risk factors such as hypertension or diabetes.

The increased cardiovascular risk in long COVID has also important implications for healthcare. Patients with long COVID – particularly women and younger patients – may benefit from more structured follow-up, including assessment of cardiovascular symptoms and better management of cardiovascular risk factors

It also suggests that long COVID should be included in future strategies for cardiovascular risk assessment and prevention, not only in specialist care but also in primary care settings where most of these patients are managed.

More research is now needed to understand the long-term trajectory of these risks and whether they persist, decrease or increase over time. Future studies should also explore whether early identification and management of cardiovascular symptoms in long COVID could help reduce the risk of more serious complications later on.

As the number of people living with long COVID continues to grow, understanding its broader health consequences will be essential – not only for each patient, but for healthcare systems as a whole.

Pia Lindberg is a registered nurse at the Karolinska Institutet in Sweden.  

Artur Fedorowski, MD, is Professor of Cardiology at the Karolinska Institutet and Senior Consultant at the Cardiology Clinic of Karolinska University Hospital in Sweden.

Axel Carl Carlsson, PhD, is a Researcher in the Department of Neurobiology at the Karolinska Institutet.

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

Doctor Faces Backlash After Claiming Four Chronic Illnesses Are Overdiagnosed

By Crystal Lindell

This week, a doctor on X (formerly Twitter) decided it was a good time to infuriate a bunch of patients with chronic illnesses.

Adam Gaffney, MD, a pulmonary and critical care doctor at Cambridge Health Alliance and Assistant Professor at Harvard Medical School, wrote this:

“Over-diagnosis / misdiagnosis / self-diagnosis of EDS, MCAS, POTS & Lyme is a real problem, and it would appear that there is little appetite by medical professionals to discuss this issue publicly.”

For those of you unfamiliar with the acronyms, EDS stands for Ehlers-Danlos syndrome,  MACS is Mast Cell Activation Syndrome, POTS is Postural Orthostatic Tachycardia Syndrome, and Lyme refers to Lyme disease. All four are serious chronic illnesses that are painful, can last a lifetime, and are difficult to diagnose and treat. 

I would link to Gaffney’s post itself, but amidst the backlash, he made his entire X account private. 

As of April 8 though, Gaffney had more than 20,000 followers, which is to say that this wasn’t some random provocateur on X/Twitter trying to stir up controversy by sharing his flawed viewpoint. Rather, it was a highly accomplished doctor with real influence. He teaches at Harvard!

Gaffney is not alone in his thinking. Indeed, any chronic illness patient will tell you that a lot of doctors feel this way. But those doctors are wrong, and I think it’s worth taking some time to discuss it, especially since I have EDS myself.

Gaffney’s post almost instantly went viral in the chronic illness community, and not in a good way. My X feed, which admittedly tends to include an outsized number of chronic illness patients, was filled with people pushing back.

DR. ADAM GAFFNEY / cha

Lorelei Lee (@MissLoreleiLee) wrote: 

“This is disgusting to say at a time when so many sick people are suffering because of the constant dismissal by doctors undertrained in these types of illness, overworked by a dysfunctional healthcare system, & seeing increased numbers in the wake of a debilitating pandemic.” 

While Barry Hunt (@BarryHunt008) wrote:

“Dear Adam,

When medicine takes a decade to name what’s destroying your life 

And calls you hysterical in the interim

"Self-diagnosis" isn’t the problem

It’s the solution.”

Of course, most patients with chronic illness already know the truth: the four ailments that Gaffney thinks are overdiagnosed actually tend to be under-diagnosed.  

Here is a 2025 study showing that of 429 patients who were eventually clinically diagnosed with hypermobile EDS, 405 of them experienced misdiagnosis in at least one of the five evaluated categories. They were told their symptoms were all in their head; that they were making it up; seeking attention; or labeled with Munchausen syndrome by proxy or some other factitious, made-up disorder.

Meanwhile, Dysautonomia International reports that – on average – it takes nearly six years for a patient to be correctly diagnosed with POTS.  And since COVID causes POTS, that means cases are rising and doctors need to adjust their thinking on how common it is. 

As for MCAS, the Mayo Clinic says that because MCAS has so many symptoms similar to other diseases, patients “can experience lengthy diagnostic delays while seeing various specialists to try to find answers."

And when it comes to Lyme disease, John Hopkins says many patients with Lyme are initially misdiagnosed because “early symptoms of fever, severe fatigue, and achiness are also common in many other illnesses."

Personally, it took me five years to get an EDS diagnosis after I first started suffering from chronic pain. And that 5-year span included two long trips to the Mayo Clinic, where it was missed both times.

All this despite the fact that one look at my over-extending elbows should have immediately put EDS on the radar of any doctor who saw me.

In the end, it was not a doctor, but PNN readers who led me down the right path, after multiple people emailed to encourage me to look into EDS.

EDS is also a dominant genetic gene, which means it runs rampant in my family. I’m sure that at least seven relatives on my mom’s side have it, but only one has been officially diagnosed besides me.

The ailments that Gaffney mentions also tend to be more likely to affect women, so it’s impossible to ignore the underlying misogyny in his assertions. Afterall, women are never sick, only hysterical and anxious.   

I also think part of this current hysteria about overdiagnosing illnesses is related to the fact that opioids and other controlled substances have been severely restricted in the last decade. The medications help people with EDS and chronic illnesses in general, and in the past patients may have just treated their symptoms and gone about their lives.  

Now though, people are forced to get an official diagnosis if they want any hope of using a controlled substance to help them get through the day.

In the end, I feel deep sorrow for Gaffney’s patients. 

My hope is that this whole ordeal will inspire him to reflect on where his thinking may be wrong. But I fear that instead, all the push-back will just make him double down. And he will just go on dismissing his patients and encouraging other doctors to do the same.