That Time My Doctor Fired Me as a Patient

By Crystal Lindell

When I first developed chronic pain back in 2013, I had so little experience with our healthcare system that I genuinely thought that all my doctors would do everything possible to help me, like the doctor that Hugh Laurie played on the TV series House

The pain I developed came on suddenly and intensely. 

It wrapped around my right ribs like a rusty barbed wire, and I had no idea how to manage it, much less live with it. I just woke up with it one day when I was 29 years old, and it never went away. 

I initially went to the emergency room, where they told me that it was likely an ulcer. But after trying to treat that and still being in horrific pain weeks later, I went to a primary care doctor recommended by a friend. 

The doctor worked for a university hospital near Chicago and, at the time, I still thought that a good doctor would be able to figure out what was going on and be able to successfully treat it. After all, the pain was in such a specific place. Surely there was something they could do? 

But after weeks of multiple rounds of tests and imaging revealed no answers, that doctor started prescribing gabapentin and basically threw up his hands in defeat. 

The only problem was, while he could ignore my pain, I could not. It haunted me. 

The pain was slowly eating away at my life and my will to live. I had a desperate need to find help so that I could survive. 

The pain would keep me up for days on end, and I would sometimes get a friend to drive me to this doctor’s office first thing in the morning, desperate to see him and hoping he would help me. He would usually just increase my gabapentin prescription and send me on my way.  

It didn’t work. So, I kept calling and insisting on more appointments, naively assuming he would help me. 

After a few months of this, he gave me “the talk.” He said there was nothing else he could do for me and that he would no longer be seeing me. 

I was too shocked to even react. How could he give up when the pain was still persisting? How was I supposed to live like this?

He didn’t offer to refer me to anyone else. He just abandoned me. 

One thing you learn quickly as a chronically ill patient is that doctors hold all the power. If one decides to fire you as a patient, you don’t have much recourse. It doesn’t matter if you still need their help – they won’t be giving it to you. 

I’m sure the fact that I kept insisting on appointments annoyed him. But while he was facing annoyance, I was facing agony and desperation. I didn’t know what else to do. I needed his help, even after he stopped giving it. 

Out of necessity, I decided to uproot my life and move back in with my family, so that I could scale back how much I was working and focus on trying to figure out what was going on with my body. 

I eventually connected to a new doctor at a different university hospital and, thankfully, he did not give up on me. In fact, he was able to get me onto an opioid-based treatment plan that I still use today. He was able to give me back my will to live, and I still see him for my pain now.

My pain was eventually diagnosed as intercostal neuralgia, likely linked to my other eventual diagnosis, Ehlers-Danlos Syndrome. I still suffer from the pain today, but it’s much better managed. 

If you scroll through any online chronic illness group, you’ll find that a lot of other patients have also been fired by their doctors. 

I’m not sure what the solution is. After all, if a doctor doesn’t want to treat you anymore, it’s probably in your best interest to stop seeing them – they just hold way too much power over your body. 

But unfortunately, as it stands, they are able to leave you out in the cold with no alternatives for medical care. And if you’re suffering from a serious health issue, finding a new doctor can feel overwhelming and near impossible. 

Doctors should be required to refer your case to someone else if they want to fire you as a patient. They should have to help make sure that you’re still receiving healthcare, even if your condition is not acutely life threatening. 

I still wish the real world was filled with doctors who were as tenacious as Dr. House, but since it’s not, patients need more well-enforced rights. 

While doctors have the luxury of deciding which patients they will treat, patients are stuck living with the body that still needs treatment.. 

If we as patients aren’t allowed to give up on our health, doctors shouldn’t be allowed to give up on us.

Poor Nutrition Linked to Higher Risk of Chronic Pain

By Crystal Lindell

Vitamin and mineral deficiencies could play a key role in chronic pain, according to new research that found low levels of Vitamin D, B12, folate and magnesium were common in people with severe chronic pain. 

The study, led by researchers at the University of Arizona Health Sciences, analyzed health data on over 220,000 people in the National Institutes of Health’s “All of Us” Research Database. The study is the first to look at micronutrient levels of people with and without chronic pain on a large scale.

“I treat chronic pain patients, and oftentimes we don’t come up with a diagnosis. But just because there isn’t a surgery that will help you doesn’t mean you’re not in pain. It just means that our understanding of pain is limited to date,” said senior author Julie Pilitsis, MD, head of the Department of Neurosurgery at U of A College of Medicine–Tucson.

“This study is a novel way to approach chronic pain treatment, where you are looking at the patient holistically to see what could be going on systemically that is easily modifiable – changes in diet as opposed to medications or other things.”

Pilitsis and her colleagues focused on five micronutrients commonly associated with chronic pain: vitamins D, B12, and C, folate and magnesium. Nutritional data was analyzed for people without pain, those with mild-to-moderate chronic pain, and people with severe chronic pain.

They found that people with severe chronic pain were more likely to have deficiencies in vitamin D, vitamin B12, folate and magnesium. The findings, however, varied depending on gender, race and ethnicity.

“The finding that surprised us the most was that Asian females had higher vitamin B12 levels than expected,” said co-author Deborah Morris, PhD, a research laboratory manager in the Department of Neurosurgery. “Asian females with severe chronic pain had the highest vitamin B12 levels overall. We were expecting it to be lower.”

The results also varied for vitamin C, where males with mild-to-moderate or severe chronic pain were more likely to have low or borderline low levels of vitamin C, compared to males without pain. 

Researchers caution that they didn’t prove a cause-and-effect relationship between nutrition and pain, but they believe their findings could lead to personalized diets and nutritional supplements for people with chronic pain. 

The Western Diet, which is common in the United States, is deficient in fruits and vegetables and contains high amounts of meat, refined grains, and desserts. This could contribute to nutritional imbalances and deficiencies in micronutrients. 

Frustratingly, like so much medical research regarding chronic pain these days, it seems one of the primary goals of the researchers is to reduce opioid use. 

“Our goal is to improve the quality of life for people with chronic pain and reduce opioid usage, and these findings have the potential to do that as part of a holistic approach to pain management,” said Morris. 

Note how she doesn’t say she wants to help patients reduce ibuprofen or gabapentin use, despite the fact that both can cause serious side effects. 

I’m glad to see more progress when it comes to understanding the causes of chronic pain –  especially since I suffer from it – but constantly framing every advancement as a way to “reduce opioid use” is disappointing. Opioid prescriptions have already been greatly reduced to levels not seen in over 20 years.

While chronic pain patients should obviously be making sure their vitamin and mineral levels are within the normal range, my fear is that doctors will over-correct – and start pushing vitamins and supplements as alternatives to pain medication. 

I myself suffered from extremely low vitamin D levels, and I do find that keeping it in the normal range helps reduce my pain levels. Holistic treatments can be a good thing, but only if they are truly holistic – encompassing both non-traditional and traditional approaches. 

FDA Warns Alkaloid in Kratom Extracts ‘May Be Dangerous’

By Pat Anson

The Food and Drug Administration is cracking down again on the kratom industry, by sending warning letters to 7 kratom vendors about illegally marketing a dietary supplement.

At issue is an alkaloid in kratom called 7-hydroxymitragynine -- known as 7-OH -- which relieves pain, improves mood, increases energy, and has opioid-like properties. 7-OH occurs naturally in kratom, but is present in only trace amounts.

Too boost its potency, some vendors are selling kratom gummies, tablets and extracts with concentrated levels of 7-OH, which the FDA says “may be dangerous.”

“7-OH is not lawful in dietary supplements and cannot be lawfully added to conventional foods. Additionally, there are no FDA-approved drugs containing 7-OH, and it is illegal to market any drugs containing 7-OH. Consumers who use 7-OH products are exposing themselves to products that have not been proven safe or effective for any use,” the agency said in a press release.         

Warning letters were sent this month to Shaman Botanicals, My Smoke Wholesale, Relax Relief Rejuvenate Trading, Thang Botanicals, Royal Diamond Imports, Hydroxie, and 7Tabz Retail. The companies were given 15 business days to respond or take corrective action.

While some of the vendors have removed 7-OH products from their websites, others continue to sell them. Hydroxie, for example, still accepts orders for chewable tablets containing up to 30mg of 7-OH on its website. There are no explicit warnings about the tablets on the webpages where they are advertised, but Hydroxie cautions consumers about 7-OH on its “Warnings” page.     

“This product contains concentrated alkaloids. The potency is significantly greater than raw leaf,” Hydroxie says. “Levels of 7-OH in these tablets are extremely concentrated. Do not use this product without first consulting a doctor about this alkaloid to ensure it is safe for you.”

Kratom has been used for centuries in southeast Asia as a natural stimulant and pain reliever, but only in the past decade has it become widely used in the United States — over the objections of the FDA, which tried unsuccessfully to ban kratom by listing it as a controlled substance.

It’s rare for someone to have an adverse reaction to natural kratom leaf, but people who consume concentrated extracts have been hospitalized or experienced overdoses.

Recently, former CDC Commissioner Robert Redfield, MD, called for kratom products containing elevated levels of 7-OH to be taken off the market.

“What we’re seeing with the compound 7-hydroxymitragynine is a textbook case of how manufacturers exploit regulatory gaps to create products that are, in essence, unregulated pharmaceuticals,” Redfield said.

“To put this in perspective: natural kratom contains less than 0.01 percent 7-hydroxymitragynine. These synthetic products contain concentrations up to 150 times higher. This is not botanical kratom — this is pharmaceutical-grade opioid chemistry operating without oversight.”

Two deaths and three other serious cases involving 7-OH mitragynine have been reported on the FDA’s Adverse Events Reporting System since 2023.  Of the three adverse events reported so far in 2025, one was considered life threatening. Another case resulted in a person being hospitalized. No other details are available.

When used cautiously, kratom advocates say 7-OH is a highly effective pain reliever and safer alternative to opioid medication.

“7-OH can be an invaluable harm reduction tool that should remain an option for the hundreds of thousands of consumers that rely on it,” the Holistic Alterative Recovery Trust (HART) said in a statement.

“HART strongly supports robust regulation and is pursuing legislation federally, and in the states, to mandate that all 7-OH products are manufactured safely, are marketed transparently, and are kept out of the hands of children.”    

THC-Dominant Cannabis Effective in Treating Anxiety and Depression

By Pat Anson

As many pain sufferers already know, anxiety and depression are common when you live with poorly treated chronic pain.

A recent study found that 40% of adults with chronic pain have clinical symptoms of depression or anxiety. Pain sufferers with fibromyalgia were particularly vulnerable to emotional stress, along with those who are younger and female.   

New research suggests that medical cannabis could be an alternative to antidepressants and anti-anxiety drugs like Xanax. The small observational study, recently published in the Journal of Affective Disorders, found that adults with and without pain experienced significant and sustained relief from anxiety and depression after they started using medicinal cannabis.

Researchers at Johns Hopkins University School of Medicine and La Trobe University followed 33 volunteers in Maryland over a six-month period. Participants completed assessments of their anxiety and depression at the start of treatment, and at one, three, and six months after beginning cannabis use.

Most participants selected cannabis products containing tetrahydrocannabinol (THC), the psychoactive ingredient in cannabis, and experienced clinically significant reductions in anxiety and depression within three months. Acute or immediate relief was dose-dependent, with participants who ingested 10–15 mg of oral THC or at least 3 puffs of vaporized cannabis reporting the most relief from anxiety and depression.

There are some caveats about using higher doses. Participants reported feeling “high” using THC-dominant cannabis, and some were so impaired it affected their driving abilities. But overall, the results were positive.

“Initiation of THC-dominant medicinal cannabis was associated with acute reductions in anxiety and depression, and sustained reductions in overall symptom severity over a 6-month period. Controlled clinical trials are needed to further investigate the efficacy and safety of medicinal cannabis for acute anxiety and depression symptom management,” researchers reported.

Previous studies have also suggested that medical cannabis is most effective when it also contains THC.

A recent study of 64 patients in Germany with inadequately treated chronic pain found that a cannabis extract with equal parts THC and CBD (cannabidiol) substantially reduced their self-reported pain intensity.

“Our findings indicate that treatment with medicinal cannabis improves both physical and mental health in patients with chronic pain,” researchers reported in the journal Advances in Therapy. “The results suggest that medicinal cannabis might be a safe alternative for patients who are inadequately treated with conventional therapies.”

In a 2019 analysis of self-reported health data from over 3,300 cannabis users, researchers reported that THC was more effective than CBD alone in treating chronic pain, insomnia and other medical conditions. Cannabis products containing higher doses of THC provided the most relief.

Another small study conducted in Israel found that “microdosing” small amounts of THC significantly reduced pain levels in patients suffering from neuropathy, without the risks of impairment and other cognitive issues.

‘This Is Blood Money’: Who Is Policing How Opioid Settlement Funds Are Spent?

By Aneri Pattani, KFF Health News

After years of legal battles, state attorneys general won billions of dollars in opioid settlements from drug companies accused of fueling the addiction crisis. They declared victory at press conferences, and some touted the deals during their gubernatorial campaigns.

But now that the windfall is being spent, are attorneys general doing enough to ensure it’s used for the intended purposes?

No, say many families affected by the overdose crisis, recovery and harm reduction advocates, policy experts, and researchers following the cash.

“This is blood money,” said Toni Torsch, a Maryland resident whose son Dan died of an overdose at age 24. It can’t make up for the lives lost, but “we do want to make sure that it’s going to count.”

Torsch and others affected by the crisis are increasingly worried that no one seems to be guarding the opioid settlement cash while elected officials eye it hungrily. With the Trump administration slashing federal funding for addiction and Congress approving massive reductions to Medicaid — the largest payer for addiction care nationwide — people fear state legislators will use the settlements as a grab bag to fill budget shortfalls.

In the face of these concerns, two research and advocacy organizations are proposing a solution: a crowdsourced database to identify potential examples of misuse and prompt attorneys general to investigate.

The Opioid Policy Institute and Popular Democracy launched a website that allows members of the public to submit alleged cases of waste, fraud, abuse, and mismanagement of opioid settlement funds. Submissions are reviewed by Jonathan Stoltman, director of the Opioid Policy Institute, and then posted with details such as how much money was spent, what was purchased, who made the decision, and links to relevant news articles or budget documents.

The database, shared first with KFF Health News, includes about 150 examples to start, including $2,362 awarded by a Missouri county to its roads and bridge department and $375,600 spent on a body scanner for a Michigan county jail. The initial examples were sourced from people in recovery, advocates, and others Stoltman and his team asked to test the project. Stoltman acknowledged he’ll face criticism as the primary arbiter of what qualifies as misuse for the database, but said he’ll use research studies to defend his decisions.

The website also shows people how to file complaints with their state attorney general and ask the office to develop a formal process for receiving and investigating such complaints.

“I hope this is a wake-up call for state AGs that their work on this project is not done,” said Frank Kearl, who co-led the effort with Stoltman and is working as an attorney at Popular Democracy until July 14. “We still have time” to make changes to ensure we “spend this money in a way that actually responds to the harm that was caused.”

The website’s launch comes just over a week after New Jersey lawmakers passed a budget that gave health systems $45 million in settlement funds despite the state attorney general’s opposition. Legislators said it would shield hospitals from the blow of federal Medicaid cuts, but harm-reduction advocates said it gives short shrift to people with substance use disorders, whom the money was meant to serve.

Lawmakers in North Carolina and Washington, D.C., are also considering using settlement funds to plug gaps, and Connecticut and Nevada have discussed it too.

“That’s not what it’s there for,” said Torsch, who runs a nonprofit dedicated to addiction recovery in her son’s honor. “We want to make sure that money is being spent in the most responsible and effective way to help people that are still struggling.”

Last year, when Torsch heard that a western Maryland county spent some of its settlement money on guns, she reached out to her state attorney general to complain. The office said it wasn’t its responsibility, Torsch said, and told her to contact the health department.

She was confused.

The attorney general’s office is supposed to represent “the top cops,” Torsch told KFF Health News.

The Maryland attorney general’s office declined to answer KFF Health News’ questions about how it handles opioid settlement complaints.

Few States Monitor Spending

About a dozen companies are expected to pay state and local governments more than $50 billion in opioid settlements over nearly two decades. Purdue Pharma’s case, the most well known, is still wending its way through court. But other companies, including Johnson & Johnson, CVS Health, and Walgreens, have begun paying.

Although the specifics of each settlement deal vary, most require states to use at least 85% of the money on efforts related to the opioid crisis. But enforcement is left to the companies that paid out the money. And legal experts are skeptical that the companies are monitoring state spending.

Attorneys general should be enforcing that standard too, said Stoltman, of the Opioid Policy Institute. “If you’re going to bang your chest about how much money you got for your state for opioids,” he said, “what are you doing to make sure that it’s actually being spent well?”

Stoltman’s and Kearl’s teams surveyed attorneys general offices in 56 states and territories to see if each office had a complaint form specific to this pot of money, explained the details needed to report misuse, and allowed submitters to track their complaints. They also searched websites of state auditors, comptrollers, and similar entities for complaint forms or procedures.

Their findings? Only three states mentioned specific processes for reporting misuse of opioid settlement money.

South Carolina and New Jersey had links on settlement-related websites that directed people to general complaint forms. Oklahoma was the only state to have an opioid settlement-specific form.

Jill Nichols, opioid response and grant coordinator in the Oklahoma Office of Attorney General, said it was created in April in response to the researchers’ inquiry. As of late June, she’d received one complaint, which was found to be without merit.

Stoltman and Kearl said they hope the crowdsourced database will encourage more attorneys general to take an active oversight role by illustrating how much potential misuse is occurring.

The Michigan attorney general’s office said it plans to publish a settlement-specific complaint form this year.

But some attorneys general told KFF Health News it wasn’t their job to track how the money is spent.

Brett Hambright, a spokesperson for Pennsylvania Attorney General David Sunday, said the state created an opioid settlement council to take on that responsibility.

In North Carolina, Attorney General Jeff Jackson’s office said, settlement funds are controlled by the state legislature and local governments. “Our office does not administer the funds nor do we have the power to withhold them,” spokesperson Ben Conroy said.

Even when attorneys general watch the money closely, their power may be limited. For example, Arizona Attorney General Kris Mayes went to court last year to stop the state legislature from giving $115 million in settlement funds to the Department of Corrections. But a judge ruled against her.

Maryland Attorney General Anthony Brown’s office directed KFF Health News’ questions to other state agencies.

Michael Coury, a spokesperson for Maryland’s Office of Overdose Response, said members of the public can email the office with complaints. If the office agrees misuse has occurred, it will bring the complaint to the attorney general, who — per the state’s agreement with local governments — “may” take action.

As of this year, the attorney general’s office will receive $1.5 million of Maryland’s opioid settlement funds annually to cover personnel and administration costs related to opioid-related lawsuits. This may involve suing more companies for future settlement deals.

Torsch, the Maryland mom, said she wishes the focus wasn’t just on winning more money but also ensuring that existing settlement dollars are spent well.

“We owe it to all the families that have been destroyed and suffered great losses,” she said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — an independent source of health policy research, polling, and journalism. Learn more about KFF.

Study Links Gabapentin to Increased Dementia Risk 

By Crystal Lindell

Gabapentin (Neurontin) may significantly increase the risk of dementia and cognitive impairment, even for middle-aged patients who only took the nerve medication for six months.

That’s according to a new study, published in the Regional Anesthesia & Pain Medicine journal, which looked at health records for over 26,000 U.S. patients with chronic low back pain.

Researchers found that patients with six months or more of gabapentin use had a 29% higher risk of developing dementia and an 85% higher risk of developing mild cognitive impairment (MCI). 

Gabapentin was originally developed to prevent epileptic seizures, but is now commonly prescribed off-label as an alternative to opioids for pain management.

Researchers have long been concerned about gabapentin’s effects on neurotransmitters in the brain, while patients have complained the drug causes brain fog, dizziness, weight gain and worsens mood. 

Perhaps the most startling aspect of the study is that gabapentin increases the risk of dementia and cognitive decline in middle aged adults.

Dementia risk more than doubled and MCI risk tripled among 35–49 year olds. A similar pattern was observed among 50–64 year olds.

Risks also rose the more often patients use gabapentin. Those with 12 or more prescriptions were 40% more likely to develop dementia and 65% more likely to develop MCI than those with fewer prescriptions.. 

“Our findings indicate an association between gabapentin prescription and dementia or cognitive impairment within 10 years. Moreover, increased gabapentin prescription frequency correlated with dementia incidence,” wrote lead author Nafis Eghrari, a medical student at Case Western Reserve University School of Medicine.

“Our results support the need for close monitoring of adult patients prescribed gabapentin to assess for potential cognitive decline.”

As a patient who has taken gabapentin for chronic pain, these results are alarming to say the least. And I wonder if the findings would also apply to pregabalin (Lyrica) and other gabapentinoids in the same class of medications. I have also been prescribed Lyrica. 

I don’t believe I was ever warned that gabapentin could increase my risk of cognitive decline, despite the fact that was a known concern. I don’t know if such a warning would have deterred me from taking it, but that’s still a choice that should have been given to me. 

I am also concerned that the information about these very real risks associated with even relatively short-term gabapentin use will reach patients and prescribers. Sales of gabapentin and pregabalin have tripled from a decade ago, when they were first touted as safer alternatives to opioids. 

Gabapentin is FDA-approved for epilepsy and neuropathic pain caused by shingles, but is also prescribed off-label for depression, ADHD, migraine, fibromyalgia, bipolar disorder and postoperative pain.  

Anyone prescribed gabapentin for pain should be told that using the medication for just six months greatly increases their risk of developing dementia. However, I doubt that will happen. In my experience, while medical professionals are quick to point out the supposed risk of opioids like hydrocodone, they often push alternatives like gabapentin onto patients without much discussion. 

The assumption is always that anything must be safer than opioids. Unfortunately, that doesn’t always seem to be the case. 

Learn the Latest Advances in Adhesive Arachnoiditis at a Free Seminar

By Pat Anson

If you suffer from adhesive arachnoiditis (AA) or would like to learn more about it, there’s a unique opportunity next month to learn about the latest research and treatments for AA, and to connect with other patients, advocates and physicians.

The Tennant Foundation and the Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN) are hosting a one-day seminar on Saturday, August 16 in Westminster, Colorado outside Denver. Lodging, meals and transportation are not provided, but the conference itself is free of charge.

AA is a spinal disease that causes chronic inflammation in the arachnoid membrane that covers the spinal canal. When nerves in the spine also become inflamed, they can adhere or stick together, causing severe pain and a wide variety of other symptoms.  

AA can develop after surgery or trauma that damages the spine. It may also be triggered by an inflammatory autoimmune disease that originates outside the spine that spreads into spinal tissue.

There is no cure for AA, but advances are being made in its treatment. The problem is that few practitioners know how recognize the early symptoms of AA, much less how to diagnose and treat it. That’s why conference organizers hope physicians will attend, along with patients, caregivers and family members.   

“We'll take whoever is interested,” says Dr. Forest Tennant, who is recognized as the world’s leading expert in AA. “We'd like to have many nurse practitioners or physicians who really want to know the disease. We're going to cover it backwards and forwards. We hope to make them educators and advocates for the disease.”  

Tennant has developed a unique protocol to treat AA not only with pharmaceuticals, but with hormones, vitamins and supplements that can help ease the symptoms and slow or prevent the disease from spreading.

“I want to get across the point that treating arachnoiditis is no more difficult than treating emphysema or rheumatoid arthritis or high blood pressure. It can be done in a primary care setting quite easily. It is not something that has to be done at the Mayo Clinic or in a sophisticated medical setting. It can be done in any office,” says Tennant.

Also speaking at the conference is Eve Blackburn, VP of Patient Engagement for ACMCRN, who will talk about the resources her organization has for patients, including a list of physicians that treat AA.  

“I’ll be sharing an update on the relaunch of the International Arachnoiditis Patient Registry, which is currently undergoing final steps in the ethics review process. We anticipate reopening within the next two months through our new secure platform, Digital Cabinet. I’ll also highlight our growing peer support programs, our referral list of Arachnoiditis-aware physicians, and the wide range of educational resources available at acmcrn.org,” said Blackburn.

The conference is not just for people diagnosed with AA. Since the disease is often associated with autoimmune disease or other types of spinal problems, patients suffering from those conditions could also learn important lessons at the seminar.  

“I call them associated diseases. Ehlers-Danlos syndrome, Tarlov cyst, and the Epstein Barr virus, those three in particular, as well as other spinal conditions. You can't talk about arachnoiditis unless you're also talking about autoimmunity and these other conditions that are high risk factors for developing the disease,” says Tennant.

The August 16 seminar is being held at the Marriott Hotel in Westminster, Colorado — which a special rate for conference attendees. Click here for more details.

You can also visit the conference website for hotel information and list of phone numbers to call if you have any questions. All attendees are encouraged to register by August 1.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

New Jersey Town ‘Wasted’ Opioid Settlement Money on Concerts

By Crystal Lindell

A town in New Jersey used its opioid settlement money for two concerts costing more than $632,000 – and a large sum of that money was used for six-figure contracts for a town employee's family businesses. 

That’s according to a scathing report by New Jersey’s Office of State Comptroller (OSC), which details the ways the township of Irvington misused the money, 

According to the OSC report, Irvington “wasted and misspent” opioid settlement money on two “Opioid Awareness Day” concerts in 2023 and 2024. A substantial portion of the money – $368,500 – was paid to Irvington employee Antoine “DJ Qua” Richardson and his wife, who were hired to book musical performers and deejay the event. 

However, the state said Irvington officials do not know — and never asked — how Richardson actually spent the hundreds of thousands of dollars he received.

“In interviews with OSC, Richardson’s wife refused to account for the money, while Richardson claimed not to know or recall how the money was spent,” the OSC said.

State investigators determined that Irvington spent more than $200,000 on billboards and other promotional materials advertising the concerts, including $34,445 on t-shirts and $16,000 for mobile billboards, which prominently featured Irvington Mayor Tony Vauss. 

Irvington also used settlement money to pay nearly $13,000 to rent luxury trailers for the performers, and $29,000 to purchase power generators and food supplies like popcorn machines, cotton candy, and shaved ice.

Irvington police officers were paid over $17,000 in overtime to provide security at the two concerts.

State investigators say “none of the billboards, promotional materials, or t-shirts that Irvington provided to OSC included information about obtaining treatment or avoiding abuse of opioids — they simply promoted the concerts.” 

The organizers made only a “superficial effort” to raise awareness about opioid abuse in the town of 61,000 people, according to the report. Most of the concert material promoted the performers, the mayor, and the concerts themselves.

The stage display also made no mention of opioids. In fact, the only message displayed on stage was an ad for a “Yacht Party Cruise Around Manhattan” hosted by Richardson.

The township also didn’t allocate any of the settlement money to pay for the overdose reversal drug Narcan that was handed out at one concert.

IRVINGTON TOWNSHIP IMAGE

Instead, concert organizers requested donations for Narcan, “even though this life-saving drug was the only clearly effective measure at one of the concerts that could directly address the crisis and potentially save lives,” the OSC said.

“These funds are meant to address an ongoing public health emergency that continues to claim lives. When municipalities like Irvington fail to meet that duty, they not only waste resources but erode public trust and betray the communities most in need of support.”

Irvington officials dispute many details in the OSC report, and even went to court to block the report’s release. Mayor Vauss released a lengthy response to the report and said the township would proceed with a defamation lawsuit against acting State Comptroller Kevin Walsh and the OSC.

Walsh’s investigation wasn’t fair, according to attorney Christopher Kinum, who represents Irvington. He said state guidance on how to spend opioid settlement money was vague.

“Every municipality is using the funds for a different reason. These funds were disbursed before there was guidance. All there was, was some term — ‘evidence-based methods to combat the opioid crisis,’” Kinum told the New Jersey Monitor.

‘A Grave Misuse of Funds’

The use of billions of dollars in opioid settlement money is an issue around the country. Over $10 billion has been handed to state and local governments in recent years, and billions more are expected over the next decade. New Jersey alone has been provided over $120 million in opioid funding, with another $520 million in future payouts.

New Jersey recently diverted $45 million in settlement money to four cash-strapped hospitals to offset federal cuts in Medicaid funding. Harm reduction advocates called that a “raid of opioid settlement funds” and want the money returned.

Nevada and Connecticut also want to use settlement money to shore up social service programs hurt by federal funding cuts; while Arizona transferred $115 million in settlement money to the state prison system to help close a budget deficit.

“I have a very high level of fear that states are going to be tapping into these settlement dollars in every creative way they can to fill some of these budget shortfalls,” national recovery advocate Ryan Hampton told KFF Health News. “It’s a grave misuse of funds and one that is going to have dire consequences.”

If you want to see how your state and local government is spending opioid settlement money, you can visit a KFF Health News database or the Opioid Settlement Tracker.

Microsoft Says Its AI Medical Tool is 4x Better Than Doctors at Diagnosing Patients

By Crystal Lindell

Microsoft is making some bold claims about the medical diagnosis tool it’s developing using artificial intelligence (AI). The company claims it is four times more accurate than a group of experienced physicians and can “solve medicine’s most complex diagnostic challenges.”.

Specifically, Microsoft’s AI Diagnostic Orchestrator – MAI-DxO for short — was able to correctly diagnose 85% of complex medical cases published in the New England Journal of Medicine (NEJM).

By comparison, when the company asked 21 practicing physicians from the US and UK to look at the same medical cases and provide a diagnosis, the human doctors were only accurate 20% of the time. 

In a demonstration video, Microsoft showed that MAI-DxO was able to order medical tests and provide the estimated financial costs for each test. It was then able to evaluate the test results and arrive at the correct diagnosis, even if the diagnosis was for an incredibly rare disease. 

“Our MAI-DxO orchestrator can handle some of the world’s toughest diagnoses with higher accuracy and lower costs. It puts us on the path to medical superintelligence - a big step towards better, more accessible care for all,” Microsoft said.

The company said it began testing its medical AI diagnosis systems with the United States Medical Licensing Examination, which is the same exam that physicians must pass to practice medicine in the United States. The test is a standardized assessment of clinical knowledge and decision making. 

But the fact that it was a standardized test made it too easy for AI. Microsoft said its orchestrator was able to get near-perfect scores within just three years. 

"These tests primarily rely on multiple-choice questions, which favor memorization over deep understanding," the company said. "By reducing medicine to one-shot answers on multiple-choice questions, such benchmarks overstate the apparent competence of AI systems and obscure their limitations."

To make its evaluations more challenging, Microsoft turned to having its AI evaluate the real-life cases published in the NEJM. 

MAI-DxO was configured to operate within different sets of cost constraints – just like in the real world when a patient’s care may be determined by what kind of health insurance they have, if any. That’s an important feature because without financial constraints, the orchestrator might default to ordering every possible test – regardless of cost, delays in care, or patient discomfort.

They also found that MAI-DxO delivered both higher diagnostic accuracy and lower overall costs than physicians or any other model they tested.   

"AI [could] reduce unnecessary healthcare costs,” the company said. "This kind of reasoning has the potential to reshape healthcare.”

Microsoft also touched on something that many patients with complex health challenges already know: the medical system is often overly reliant on siloed medical specialists. That’s another area where the company sees AI potentially improving patient care. 

With general practitioners treating a wide array of conditions and specialists focused on a single area of expertise, the hope is that AI would essentially be able to pull medical knowledge from both. 

While MAI-DxO seems to excel at tackling the most complex diagnostic challenges, Microsoft says further testing is needed to assess its performance on more common, everyday health conditions.

They also acknowledged that the clinicians in their study worked without access to colleagues, textbooks, or even AI – all tools that they may have in their day-to-day clinical practice. This was done to enable a fair comparison to raw human performance, but it also means that its unclear just how well AI actually competes against real-world physicians.

MAI-DxO is not available for commercial use yet. Microsoft said they need to do more testing to evaluate its reliability, safety, and efficacy. That could take about a decade. 

“It’s pretty clear that we are on a path to these systems getting almost error-free in the next 5-10 years. It will be a massive weight off the shoulders of all health systems around the world,” Mustafa Suleyman, chief executive of Microsoft AI, told The Guardian.

Descending Pain: A New Way to Control Severe Chronic Pain

By Dr. Forest Tennant and Ingrid Hollis

The control of severe chronic pain in medical practice today is almost exclusively based on “ascending” or “neuropathic” pain:

Ascending pain occurs when a pain signal is transmitted from the site of injury or disease up the spinal cord to the brain. Neuropathic pain is the pain that results when there is damage or dysfunction of nerve tissue in the brain, spinal cord or peripheral nerves. 

In recent years, researchers discovered that when chronic pain centralizes, it creates a third type of pain called “descending” pain. This is a critical issue for persons with adhesive arachnoiditis and other diseases that cause severe chronic pain, because descending pain requires different medications than those used for ascending and neuropathic pain.

A person with constant pain will produce excess bioelectricity (central sensitization or centralized pain) in the glial cell matrix of the brain. This bioelectricity “descends” or travels down the spinal cord and vagus nerve. It not only produces pain, but over-stimulates the cardiovascular system. 

Descending pain is controlled by the noradrenergic receptor.  The neurotransmitter to this receptor is called noradrenalin or norepinephrine. 

Symptoms of Descending Pain

Descending pain will be present in persons who have constant, unremitting pain. Here are the symptoms:

  • Pulse rate elevates

  • Periodic hot flashes

  • Cold hands/feet

  • Excess sweating

  • Allodynia (pain upon light touch) 

Over-Reliance on Opioids and Neuropathic Agents

The lack of awareness about descending pain is one reason why high doses of opioids and neuropathic agents (i.e., gabapentin, diazepam) may be over-prescribed. Physicians may simply raise the opioid or gabapentin dosage if they are not aware that the cause is descending pain.  What’s more, the increase in dosage may be ineffective or even harmful.

This also applies to opioids in implanted pumps.  Countless persons have been treated with an implanted device or “pain pump” with the erroneous belief that no medication, except intrathecal opioids, are needed.  Patients with these devices soon learn that their pain is poorly controlled by opioids alone. 

Opioids and neuropathic agents have little effect on descending pain.  It must be treated separately.

Pain treatment and relief are based on a medicinal that activates or stimulates a specific receptor (think “action point”) that is present in nerve cells in the brain, spinal cord or peripheral nervous system. Here is how the three types of pain and their receptors can be treated:

  1. Ascending pain needs to be treated with medications that activate the endorphin or opioid receptor. 

  2. Neuropathic pain control depends on activation of a receptor called gamma amino butyric acid (GABA). 

  3. Descending pain control must activate the norepinephrine (noradrenalin) receptor.

To achieve good control of severe, chronic or intractable pain, all three of these receptors must be simultaneously activated.  Severe chronic pain is commonly undertreated, because all three receptors are not simultaneously activated.

Medication Classes for Descending Pain

Three medication classes are used to treat descending pain.  Medical practitioners and patients have choices, and can experiment to help decide which medications and supplements bring the most comfort.

  1. Bioelectric Blockers: Tizanidine, propanolol, clonidine, tapentadol (Nucynta).

  2. Receptor Activators: Modafanil (Provigil), methylphenidate (Ritalin), dextroamphetamine, amphetamine salts (Adderall), phentermine, lisdexamfetamine (Vynanse). Non-prescription activators: lion’s mane, mushroom extract, St. John’s wort, rhodiola, mucuna, whole adrenal gland.

  3. Precursor (Amino Acids) of Noradrenaline: Phenylalanine at 1,000 to 2,000mg a day. Tyrosine at 1,000 to 2,000mg a day.

When not controlled, chronic pain, inflammation and autoimmunity will deplete a number of neurotransmitters and hormones.  When that happens, noradenaline (norepinephrine) will often be depleted. 

Supplements of either amino acids (phenylalanine or tyrosine) and daily protein intake may help reduce both background and flare pains. Phenylalanine and/or tyrosine need not be taken every day, but they are highly recommended at least two days a week. They can and should be taken with a bioelectric blocker or receptor activator.

Noradrenergic receptor activators do not raise pulse rate or blood pressure in a constant pain patient like they do in a normal person.  They may actually lower blood pressure and pulse rate.  That’s because chronic pain, inflammation and autoimmunity deplete noradrenalin.

One medication, tapentadol (Nucynta), is both an opioid and norandrenergic blocker. It is highly recommended.

Descending pain is a new discovery that must be recognized and controlled to achieve relief from severe chronic pain.  A sole reliance on opioid and neuropathic agents may often provide inadequate pain relief.

To learn more about descending, ascending and neuropathic pain, you can watch a recent episode of DocToks with Dr. Forest Tennant and Friends.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its bulletins here.

Ingrid Hollis is a person in pain, patient advocate, and advisor to the Tennant Foundation.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Why Ice Cream May Be Bad for Your Gut Health

By David Hilzenrath, KFF Health News

It’s a marvel of food technology: ice cream that resists melting. In a video explaining the science behind it, a seller of food chemicals shows scoops of ice cream holding their shape under hot lights. The super ingredient? Polysorbate 80.

Polysorbate 80 is an emulsifier, a chemical used to control the consistency of thousands of supermarket products. Other widely used emulsifiers or stabilizers include carboxymethyl cellulose, carrageenan, and maltodextrin.

Recently, such ingredients have been showing up in scientific studies for another reason: Researchers say they may cause a variety of health problems.

Studies have found that emulsifiers can alter the mix of bacteria in the gut, known as the microbiome or microbiota; damage the lining of the gastrointestinal tract; and trigger inflammation, potentially contributing to problems elsewhere in the body.

Emulsifiers and stabilizers are among the most common ingredients in ultra-processed foods, a prime target of the “Make America Healthy Again” campaign by Health and Human Services Secretary Robert F. Kennedy Jr.

They are on the department’s radar: Their potentially harmful effects were flagged in a document HHS recently produced to support Kennedy’s drive to eliminate petroleum-based food dyes. But they illustrate the complexity of the war on food additives.

They show how, when it comes to food science, regulators are chronically playing catch-up. In the meantime, for many ingredients, regulators and consumers alike are left in a gray zone between suspicion and proof of harm in humans.

Emulsifiers’ assault on the microbiome could help explain inflammatory bowel diseases such as Crohn’s disease and ulcerative colitis, metabolic disorders, and even cancer, the studies suggest.

“There is a lot of data showing that those compounds are really detrimental for the microbiota and that we should stop using them,” said Benoit Chassaing, a research director at the French National Institute of Health and Medical Research and a co-author of several related studies.

Yet much larger and more ambitious clinical trials in humans are needed, Chassaing added.

For Lewis Rands, who has suffered from gastrointestinal illness, the research fits his own experience as a consumer. Changing his diet to avoid emulsifiers has made a shocking difference, easing symptoms that were debilitating, Rands said.

“Clinically, many patients have reported an improvement in symptoms with such changes,” said Ashwin Ananthakrishnan, a gastroenterologist and researcher at Massachusetts General Hospital.

The scientific findings come with caveats. For instance, much of the research has been done in mice, or by mimicking the human gut in a tube. There are many unknowns. Not all emulsifiers have bad effects, or the same effects, and some people are thought to be much more vulnerable than others.

Even some researchers who have co-authored papers say that the substances have not been proven harmful to humans and that it’s too soon to say regulators should ban them.

Still, the research poses a challenge for the FDA. When emulsifiers began spreading through the food supply, the agency wasn’t focusing on the gut microbiome, a relatively recent scientific frontier, researchers said.

Martin Makary, appointed by President Donald Trump to head the FDA, mentioned the microbiome at his Senate confirmation hearing in March. Though he didn’t cite emulsifiers specifically or identify chemicals by name, he said substances that affect the microbiome deserve the FDA’s attention.

“There’s a body of research now that suggests concern with some of these ingredients,” Makary said. “We have to look at those ingredients, and you have my commitment to do so if confirmed as FDA commissioner.

“These chemicals are creating an inflammatory response in the gastrointestinal tract, and with an altered microbiome lining that GI tract, kids feel sick.”

The FDA and the Department of Health and Human Services did not respond to questions about Makary’s testimony.

However, when journalist Emily Kopp asked HHS for the science behind its recent announcement that it is phasing out petroleum-based food dyes, the agency provided a compilation of information on potentially harmful compounds commonly found in ultraprocessed foods. The document, which appeared to be a draft, included a section on emulsifiers, such as xanthan gum and carrageenan. It noted that the section needed more work.

HHS subsequently provided the document to KFF Health News.

As far back as 2020, an international organization for the study of inflammatory bowel diseases advised that, for people with those conditions, it “may be prudent to limit intake” of maltodextrin, carrageenan, carboxymethyl cellulose, and polysorbate 80.

Emulsifiers are developed from a variety of sources, including plants and bacteria. Some ingredients that might affect the microbiome show up in foods because they were deemed “generally recognized as safe,” or GRAS.

“New information may at any time require reconsideration of the GRAS status of a food ingredient,” the Code of Federal Regulations says.

Ben & Jerry’s vs Häagen-Dazs

Rands, a genetic scientist, took matters into his own hands to battle severe inflammatory bowel disease. The illness caused bloating, stomach pain, cramps, frequent bowel movements, and bleeding, he said.

It left him in a constant state of anxiety and stress, he added, wondering where the nearest bathroom was and whether he’d reach it in time. Even taking a walk around the block with his wife and baby near their home in Australia was problematic.

Then, on the advice of a dietitian, Rands began avoiding foods with emulsifiers: chemicals such as carboxymethyl cellulose, carrageenan, guar gum, xanthan gum, and maltodextrin — plus other additives.

For instance, instead of eating Ben & Jerry’s ice cream, he switched to Häagen-Dazs ice cream that is free of the substances at issue. The relief was dramatic.

“It’s a huge difference,” Rands said. “To me, it’s made more of a difference than any drug.”

He has been able to scale back or stop taking several drugs, which is an added relief — not least because some can have harmful side effects, and, he said, one was taking its toll.

Rands said he used a scientific approach, isolating variables in his diet and logging the results. Avoiding artificial sweeteners helps, he said, but most of the benefit relates to avoiding the emulsifiers.

Ben & Jerry’s did not respond to a request for comment.

‘Science That Hasn’t Been Done Yet’

The Consumer Brands Association, which represents makers of processed foods, stands behind use of the chemicals.

“Food safety and protecting the integrity of the food supply is priority number one for the makers of America’s food and beverage products,” Sarah Gallo, the group’s senior vice president of product policy, said in a statement. “Emulsifiers and thickening agents play an important role in improving food texture and consistency, and have been studied by the FDA through a rigorous scientific and risk-based process.”

Asked for specifics on how the FDA had analyzed potential effects on the microbiome, the group did not respond.

Chassaing said the chemicals were “never considered for the potential effect on the microbiota.”

Robert Califf, who led the FDA under Presidents Barack Obama and Joe Biden, said in an interview that scientists are just beginning to understand the microbiome. He compared it to where the field of genomics was 20 years ago, only much more complicated — “multiplied by a thousand dimensions.”

He said the substances “fell within the standards” when they were greenlighted. “But hopefully most people agree that the standards need to be upgraded,” he added.

“This is different than traditional food safety thinking about, ‘Does it cause an immediate problem?’” Califf said. “We’re talking about long-term health outcomes here.”

And has the FDA evaluated those?

“How could it? There was no way to do it,” Califf said. The answers will vary depending on the emulsifier, and “proving whether it’s bad or good is going to require rigorous science that hasn’t been done yet.”

More recent scientific capabilities expand the possibilities, he said.

‘A Lot of Confusion in the Field’

For a consumer, trying to steer clear of emulsifiers can be difficult. Without realizing it, people can consume a variety of emulsifiers from a variety of foods — and the same chemicals from multiple sources.

Polysorbate 80 was listed as an ingredient on the labels of 2,311 products as of May 12, according to an online database posted by the Environmental Working Group using information from NielsenIQ. Carrageenan was listed on 8,100 product labels; maltodextrin, 12,769; and xanthan gum, 17,153.

Some emulsifiers have multiple names, making them harder to recognize. Some names can apply to more than one emulsifier. And some chemical names that appear on product labels don’t appear in the FDA’s “Substances Added to Food” inventory.

Carboxymethyl cellulose — not to be confused with methyl cellulose — is also known as carboxymethylcellulose  and cellulose gum. Maltodextrin can be derived from substances such as cornstarch, rice starch, and wheat starch — but the FDA doesn’t consider it synonymous with the term “modified food starch.”

The naming practices can frustrate efforts to track the chemicals in food, to measure how much of the stuff people are taking in, and even to figure out precisely which chemicals a scientific study evaluated, researchers said.

“There’s a lot of confusion in the field,” said Christine McDonald, a researcher at the Cleveland Clinic who has studied maltodextrin. She called for more consistent naming of additives in the United States.

The very term “emulsifier” is problematic. By strict definition, emulsifiers create an emulsion — a stable blend of liquids that would not otherwise mix, such as oil and water. However, the term is used broadly, encompassing chemicals such as maltodextrin that thicken, stabilize, or alter texture.

Gummed Up

Emulsifiers can be found in foods marketed as natural or healthy as well as ones that look artificial. Some products contain multiple emulsifiers.

Products sold at Whole Foods, for instance, list a variety of emulsifiers on their labels. 365 brand Organic Vegan Ranch Dressing & Dip contained organic tapioca maltodextrin and xanthan gum.

Pacific Seafood Starfish brand Cornmeal Crusted Fishsticks — marked as wild-caught and MSC-certified (sustainably sourced) — contain guar gum. Flour tortillas by 365 included monoglycerides of fatty acids and “stabilizer (guar gum, xanthan gum, carrageenan).”

At a Safeway supermarket, Healthy Choice Grilled Chicken Pesto With Vegetables listed modified potato starch, modified corn starch, carrageenan, xanthan gum, and guar gum.

The label on Newman’s Own Caesar salad dressing said the product contained no artificial preservatives or flavors, no colors from an artificial source, and was gluten-free. The ingredient label listed, “as a thickener,” xanthan gum.

In response to questions for this article, Whole Foods Market said it prohibits more than 300 ingredients commonly found in food.

“Our experts evaluate ingredients for acceptability in all food products we sell based on the best available scientific research,” the company said in a statement provided by spokesperson Rachel Malish.

Safeway’s parent company, Albertsons Companies, did not respond to inquiries. Nor did Pacific Seafood, Newman’s Own, or Conagra Brands, which makes Healthy Choice.

A Growing Body of Research

Research on emulsifiers has been building in recent years.

For example, a study published in January by the Journal of Crohn’s and Colitis concluded that a diet low in emulsifiers is an effective treatment for mild or moderate Crohn’s disease. The eight-week clinical trial, which tracked 154 patients in the United Kingdom, focused on carrageenan, carboxymethyl cellulose, and polysorbate 80.

A study published in February 2024 in the journal PLOS Medicine found that higher intakes of carrageenan and mono- and diglycerides of fatty acids were associated with higher risks of cancer. The study observed 92,000 French adults for an average of 6.7 years.

A study published in September 2023 in The BMJ, formerly known as the British Medical Journal, found that intake of several types of emulsifiers was associated with the risk of cardiovascular disease. The study observed more than 95,000 French adults for a median of 7.4 years.

A series of earlier studies found that emulsifiers “can promote chronic intestinal inflammation in mice”; that two in particular, carboxymethyl cellulose and polysorbate 80, “profoundly impact intestinal microbiota in a manner that promotes gut inflammation and associated disease states”; and that, based on a laboratory study of human samples, “numerous, but not all, commonly used emulsifiers can directly alter gut microbiota in a manner expected to promote intestinal inflammation,” as recounted in a 2021 paper in the journal Microbiome.

Other findings diverge. A study from Australia, published in February in Alimentary Pharmacology and Therapeutics, followed 24 Crohn’s patients over four weeks and concluded that, in the context of a healthy diet, the emulsifier content had “no influence over disease activity.”

The authors declared conflicts of interest, including payments from PepsiCo, drug companies, and Mindset Health Pty, which promotes hypnosis-based therapy. One of the authors, gastroenterology professor Peter Gibson of Monash University in Australia, said the conflicts of interest “have nothing whatsoever to do with the study.”

“It is important not to overinterpret results of studies,” he said, adding that his team’s report “does not mean that emulsifiers are good for you or that there are no health benefits in avoiding emulsifiers.”

Häagen-Dazs ‘Keeps It Real’

Häagen-Dazs touts the absence of such chemicals as a virtue. “Keeping it real, the way it should be,” it said in an online plug for its vanilla ice cream. “No emulsifiers. No stabilizers.”

However, at the company that makes Häagen-Dazs in the United States, Dreyer’s Grand Ice Cream, there are limits to that approach.

Under other brand names — such as Edy’s, Dreyer’s, and Drumstick — it markets products that contain emulsifiers or stabilizers. The company did not respond to questions. In addition, a spokesperson for Nestlé, which markets Drumstick and Häagen-Dazs brands internationally, did not respond.

Drumstick Vanilla Caramel Sundae Cones have no artificial flavors or colors, the package says — but they feature an array of other ingredients, including soy lecithin, guar gum, monogylcerides, and carob bean gum.

The cones, the company’s website says, offer “one incredibly creamy experience.”

But the creamy filling doesn’t melt. Instead, over 24 hours on a KFF Health News reporter’s kitchen counter, it bled a caramel-tinged fluid and shrank into a sticky white foam that could be cut with a knife.

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

RFK Jr. Wants Everyone To Use Health Wearables. Should Patients Be Worried?

By Crystal Lindell

Call me a conspiracy theorist if you want, but I’m skeptical about a governmental push to get everyone to use health wearables. 

How much day-to-day or even minute-to-minute data do we really need about patients? And how much health data do we really want stored in the data cloud in the sky, for anyone to access? 

Health wearables is a broad category that typically includes everything from Apple Watches to blood glucose patches. And Robert F. Kennedy Jr., Secretary of Health and Human Services, has launched a new initiative to get everyone to use them. 

He spoke about it during a recent hearing of the House Subcommittee on Health, as reported by ABC News. 

"It's a way … people can take control over their own health," Kennedy said. “They can take responsibility. They can see, as you know, what food is doing to their glucose levels, their heart rates and a number of other metrics as they eat it, and they can begin to make good judgments about their diet, about their physical activity, about the way that they live their lives.

"We think that wearables are a key to the MAHA agenda -- Making America Healthy Again. My vision is that every American is wearing a wearable within four years."

It might sound good at first. After all, a continuous glucose patch is more convenient for a diabetic than having to constantly prick their finger for their glucose readings. 

But I think patients should remain skeptical of such a push for more health wearables – especially when it's coming from the government. 

First, I do think there’s such a thing as too much data. Most people don’t need to know exactly what their blood glucose level is at every moment of the day. I have relatives who’ve used glucose patches, and not only were the readings often inaccurate, but the very expensive patches were also hard to apply and fell off early.

In other words, having continuous data does not inherently make a health monitor better than alternatives. 

Also, having access to how many steps you’re taking daily or what your heart rate is during a workout can quickly turn into an obsession, trying to get arbitrary numbers to show up on your device. 

Can Tech Be Trusted?

Beyond that though, I do think people should be skeptical about multiple stakeholders having access to a bunch of our health data. 

Tech companies that create the devices can’t be trusted to use the data responsibly or to keep it private. They already routinely hand over cell phone data to law enforcement agencies

Recently a bankruptcy judge approved the sale of 23andMe's genetic data on 15 million people to a research institute. Many of those users are now scrambling to delete their data before the sale is completed. 

I’m also not convinced health care providers can be trusted with it either. I can imagine a world where doctors look at heart rate data from your Oura Ring and declare that it’s too steady, and thus you must not really have chronic pain. 

Patients will never win though, as I’m sure doctors will be just as likely to dismiss data that would show that your pain is legitimate as “some gimmicky” information from a tech company. 

And God forbid they create a mass-produced device that can measure something like opioid use through our sweat and then make pain patients wear it to show doctors if they’re using their medication exactly as prescribed.

That’s not so far-fetched. Years ago, a tech company developed an experimental wristband device that tracked skin temperature and movement, and tested it on ER patients given opioids for acute pain. The theory was that opioid users are more likely to fidget or show restless activity when they feel it’s time for another dose, so that would be an easy way to track their opioid use.  

More recently, another company has been developing a smartphone app that can evaluate your health and vital signs just by analyzing a selfie image taken by the camera on your phone.

But again, it’s the fact that this whole push for more wearables is coming from a government agency that should really alarm people.

If they gain access to it, they could use it to kick people off programs like Medicaid, increase insurance premiums, and potentially even arrest people. I especially worry that low-income patients could be coerced into using health wearables in order to continue to qualify for benefits and access to services. 

Remember the COVID vaccine conspiracy theory that the government was using the vaccines to inject small microchip trackers into everyone? It was obviously untrue, but now the government literally wants everyone to wear health trackers. That should alarm anyone who was ever concerned about governmental surveillance.

My advice to patients is to resist using too many health data trackers. Yes, they can be helpful in some cases. But there is a point where both the wearer and the monitors have too much access to data. 

At the end of the day, the real question is, who will be tracking the health trackers?

Poor Pain Treatment in ER Raises Risk of Opioid Misuse Later

By Pat Anson

Patients with acute pain who are dissatisfied with their pain treatment in emergency departments are more likely to misuse opioids three months later, according to a new study. The findings are particularly true for black patients, who are more likely to be unhappy with their treatment and to be sent home without an opioid prescription.

“While a great deal of studies on opioid misuse focus on overprescribing, this study flips the script by showing that under-prescribing—or more precisely, ignoring a patient’s pain treatment preferences—can also lead to harmful outcomes, especially when patients are dissatisfied with their care,” said Max Jordan Nguemeni Tiako, MD, an assistant professor at the David Geffen School of Medicine at UCLA and lead author of the study in the Journal of General Internal Medicine.

Previous studies have found disparities in pain treatment between white and black patients in emergency rooms, with white patients 26% more likely to get opioid medication. This new study has similar findings, but went a step further to see what the long-term consequences of poor treatment could be.

Nguemeni Tiako and his colleagues analyzed data for 735 ER patients treated for acute back or kidney stone pain, and surveyed them about their experiences 90 days later. The survey asked a series of questions about their medication use, appointment problems, emotional/psychiatric issues, and drug misuse --- and then assigned a current opioid misuse (COMM score) based on their answers.

Researchers found that black patients (21.8%) were more likely than white patients (15%) to have an “unmet opioid preference” when they were discharged from the ER. They were also more likely to be dissatisfied with their pain treatment overall.

Black patients with poor satisfaction and unmet opioid preferences had higher COMM scores compared to white patients. Both blacks and whites who were highly satisfied with their pain treatment had low risk of opioid misuse.

“The finding that unmet opioid preference had a unique effect on opioid misuse risk among Black participants is consistent with our prior analyses of this cohort, in which we found that receiving a prescription for opioids at discharge was associated with lower odds of reported non-prescribed opioid use,” researchers reported.

“Similarly novel to our study is the finding that satisfaction with pain treatment significantly mediates the impact of unmet preference on opioid misuse, especially among Black participants.”    

While an unmet preference for opioids may lead some patients to seek relief through nonprescribed opioids, researchers think other factors in the ER could mitigate such risks, such as more empathy by providers, more patient-centered communication, and patient education about effective therapies and opioid risks.

Brain Receptor May Hold Key to Treating Neuropathic Pain  

By Pooja Shree Chettiar and Siddhesh Sabnis  

Pain is easy to understand until it isn’t. A stubbed toe or sprained ankle hurts, but it makes sense because the cause is clear and the pain fades as you heal.

But what if the pain didn’t go away? What if even a breeze felt like fire, or your leg burned for no reason at all? When pain lingers without a clear cause, that’s neuropathic pain.

We are neuroscientists who study how pain circuits in the brain and spinal cord change over time. Our work focuses on the molecules that quietly reshape how pain is felt and remembered.

We didn’t fully grasp how different neuropathic pain was from injury-related pain until we began working in a lab studying it. Patients spoke of a phantom pain that haunted them daily – unseen, unexplained and life-altering.

These conversations shifted our focus from symptoms to mechanisms. What causes this ghost pain to persist, and how can we intervene at the molecular level to change it?

More Than Just Physical Pain

Neuropathic pain stems from damage to or dysfunction in the nervous system itself. The system that was meant to detect pain becomes the source of it, like a fire alarm going off without a fire. Even a soft touch or breeze can feel unbearable.

Neuropathic pain doesn’t just affect the body – it also alters the brain. Chronic pain of this nature often leads to depression, anxiety, social isolation and a deep sense of helplessness. It can make even the most routine tasks feel unbearable.

About 10% of the U.S. population – tens of millions of people – experience neuropathic pain, and cases are rising as the population ages. Complications from diabetes, cancer treatments or spinal cord injuries can lead to this condition. Despite its prevalence, doctors often overlook neuropathic pain because its underlying biology is poorly understood.

There’s also an economic cost to neuropathic pain. This condition contributes to billions of dollars in health care spending, missed workdays and lost productivity. In the search for relief, many turn to opioids, a path that, as seen from the opioid epidemic, can carry its own devastating consequences through addiction.

GluD1: A Quiet But Crucial Player

Finding treatments for neuropathic pain requires answering several questions. Why does the nervous system misfire in this way? What exactly causes it to rewire in ways that increase pain sensitivity or create phantom sensations? And most urgently: Is there a way to reset the system?

This is where our lab’s work and the story of a receptor called GluD1 comes in. Short for glutamate delta-1 receptor, this protein doesn’t usually make headlines. Scientists have long considered GluD1 a biochemical curiosity, part of the glutamate receptor family, but not known to function like its relatives that typically transmit electrical signals in the brain.

Instead, GluD1 plays a different role. It helps organize synapses, the junctions where neurons connect. Think of it as a construction foreman: It doesn’t send messages itself, but directs where connections form and how strong they become.

This organizing role is critical in shaping the way neural circuits develop and adapt, especially in regions involved in pain and emotion. Our lab’s research suggests that GluD1 acts as a molecular architect of pain circuits, particularly in conditions like neuropathic pain where those circuits misfire or rewire abnormally. In parts of the nervous system crucial for pain processing like the spinal cord and amygdala, GluD1 may shape how people experience pain physically and emotionally.

Fixing the Misfire

Across our work, we found that disruptions to GluD1 activity is linked to persistent pain. Restoring GluD1 activity can reduce pain. The question is, how exactly does GluD1 reshape the pain experience?

In our first study, we discovered that GluD1 doesn’t operate solo. It teams up with a protein called cerebellin-1 to form a structure that maintains constant communication between brain cells. This structure, called a trans-synaptic bridge, can be compared to a strong handshake between two neurons. It makes sure that pain signals are appropriately processed and filtered.

But in chronic pain, the bridge between these proteins becomes unstable and starts to fall apart. The result is chaotic. Like a group chat where everyone is talking at once and nobody can be heard clearly, neurons start to misfire and overreact. This synaptic noise turns up the brain’s pain sensitivity, both physically and emotionally. It suggests that GluD1 isn’t just managing pain signals, but also may be shaping how those signals feel.

What if we could restore that broken connection?

In our second study, we injected mice with cerebellin-1 and saw that it reactivated GluD1 activity, easing their chronic pain without producing any side effects. It helped the pain processing system work again without the sedative effects or disruptions to other nerve signals that are common with opioids. Rather than just numbing the body, reactivating GluD1 activity recalibrated how the brain processes pain.

Of course, this research is still in the early stages, far from clinical trials. But the implications are exciting: GluD1 may offer a way to repair the pain processing network itself, with fewer side effects and less risk of addiction than current treatments.

For millions living with chronic pain, this small, peculiar receptor may open the door to a new kind of relief: one that heals the system, not just masks its symptoms.

Pooja Shree Chettiar and Siddhesh Sabnis are neuroscience PhD candidates at Texas A&M University.

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

When Doctors Don’t Care: The High Cost of Untreated Pain

By Neen Monty

I just returned from seeing my GP.

I explained to her what happened while she was away — that the doctor who filled in for her refused to prescribe the full amount of my pain medication. As a result of being shortchanged, I went through four days of untreated, severe pain.

My GP said nothing.

I asked why the other GP said she couldn’t prescribe. My GP responded with, “I can’t comment on that.”

I was wondering who was lying to me, and assumed it wasn’t my GP. My GP believed my medications would be prescribed, in good faith.

They weren’t. The other GP lied to her.

And in doing so, she knowingly left someone with a painful, progressive, incurable disease to suffer in agony. Because she could. That’s not medicine. That’s abuse.

That GP should not be practicing.

The most fundamental job of a doctor is to relieve suffering. To relieve pain.

We are now in a world where doctors refuse to treat pain -- and most other doctors say nothing about it. There are no consequences for being derelict in their duty of care.

We’re in a world where people with long-term diseases and permanent disability are being left in agony, discarded by a medical system that sees us as burdens, not as patients. We are not being treated, we are being tortured.

Doctors who refuse to treat pain in people with serious, documented illness are not neutral. They are sadists. And they have no business practicing medicine.

I’m not talking about someone with a mild headache or a sore knee. I’m talking about severe, constant, intractable pain. Pain from MS, RA, Parkinson’s, adhesive arachnoiditis, spinal cord injuries, cancer, and many, many more horrible diseases. Diseases that destroy lives.

And yet, doctors are allowed to ignore us. Abandon us. Deem us unworthy of relief.

Like I was.

My own GP, who knows me and knows my history, did nothing. She simply "fixed" the problem by giving me the rest of my prescription: 90 tablets. Enough for 14 days.

But where was her anger? Her outrage? She promised I’d be looked after while she was away. I wasn’t.

She was betrayed by this other GP as much as I was. But she said nothing. She will accept that this other GP decided not to treat my pain and won’t mention it at all.

And next time my GP goes away? What then? I can’t see the other GP again.

Insult to injury is that I’ve now had to pay for three GP visits this month. That’s $180 I didn’t have.

I endured four days of relentless, unmanaged pain. Because one GP decided I don’t matter.

Because she looked at me and saw garbage. Not a person. Not worthy of her time. Her disgust and disdain towards me were open and palpable.

And no one held her accountable. No one will hold her accountable. She is a law unto herself.

If you ever wondered what it feels like to be dehumanized in real-time, to be made invisible because you're sick and in pain, to be deemed worthless, this is it.

I am very unwell. And I’m in a lot of pain. When pain goes untreated for many days in a row, it is not so easy to get it back under control again.

Treating pain patients like garbage has to stop!

Neen Monty is a writer and patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”