Can Ketamine Treat Fibromyalgia Pain?

By Pat Anson

At a time when the medical and recreational use of ketamine is coming under more scrutiny from law enforcement, a new study highlights its potential value as a treatment for fibromyalgia pain.

Ketamine is an anesthetic drug that is only FDA-approved for depression and anesthesia. But in recent years ketamine infusions are increasingly being used “off-label” for severe chronic pain conditions such as Complex Regional Pain Syndrome (CRPS).

In a small systematic review (a study of studies), researchers in Brazil found that ketamine infusions were safe and effective in relieving fibromyalgia pain. The review was small – just 6 clinical trials involving 115 patients – because ketamine has rarely been considered as a treatment for fibromyalgia due to its potency. Ketamine infusions require constant medical supervision because they put patients into a temporary dream-like state that can lead to hallucinations and out-of-body experiences.

But the Brazilian researchers found the side effects from infusions were mild and short-term, with some fibromyalgia patients experiencing pain relief that lasted for days or weeks.

Fibromyalgia is a poorly understood condition that causes widespread body pain, fatigue, insomnia, brain fog and mood disorders. The FDA has approved only three medications for fibromyalgia, two antidepressants (Cymbalta and Savella) and a nerve drug (Lyrica), but many patients consider the drugs ineffective.

Could ketamine be another option?

“Ketamine infusions might be a reasonable therapeutic approach for short-term relief of symptoms but unsatisfactory at inducing long-term analgesia in FM (fibromyalgia) patients,” the Brazilian research team reported in Advances in Rheumatology. “Future studies that evaluate the safety and effectiveness of ketamine in FM are desired for long-term follow-up. In patients refractory to conventional therapy, ketamine infusions might be a reasonable therapeutic approach.”

A recent case study suggests ketamine does have potential as a long-term treatment. A 68-year-old woman with fibromyalgia experienced “significant, widespread pain relief” after receiving several ketamine infusions over a two-week period. She continued getting infusions twice a week for the next year.    

“Pain relief has persisted under this regimen, along with a demonstrable improvement in quality of life, a reduced use of morphine, and the cessation of anti-depressant medication. This case indicates that long-term ketamine infusions show promise for chronic pain management and that more longitudinal studies on this treatment are warranted,” researchers reported.

‘Targeting and Investigating Doctors’

The positive news about ketamine is being overshadowed by the investigation into the death of actor Matthew Perry, who drowned in a hot tub last year after getting three ketamine injections in one day – none of them while under medical supervision.  Five people, two of them doctors, were recently arrested in connection with Perry’s death, including an alleged drug dealer known as the “Ketamine Queen.”

Perry had long struggled with substance abuse issues, but federal prosecutors say the defendants “were more interested in profiting off Mr. Perry than caring about his well-being.”  The two doctors charged in the case both surrendered their DEA licenses and can no longer prescribe controlled substances.      

In a recent appearance on CBS’ Face the Nation, DEA Administrator Anne Milgram likened Perry’s death to the opioid crisis, claiming that his doctors were ultimately responsible.  

“It started with two unscrupulous doctors who were violating their oath, which is to take care of their patients, and instead supplying Matthew Perry with enormous quantities of ketamine in exchange for huge amounts of money. And then it switched to the street where Matthew Perry was buying the ketamine from two drug traffickers,” Milgram said.

“Every single day, (we) are targeting and investigating doctors, nurse practitioners, others who are violating this duty of trust to their patients by over prescribing medicine or prescribing medicine that isn't necessary.”

Milgram also claimed that ketamine “has a high potential” for addiction. While experts agree the drug can be abused, ketamine is not an opioid and does not suppress respiration, the leading cause of an overdose.  

Kamala Harris’ Stepdaughter Draws Backlash for Advocating Pain Treatments

By Crystal Lindell

Ella Emhoff, the 25-year old stepdaughter of Vice President Kamala Harris, recently revealed that she has chronic back pain and shared a list of ways that she tries to address it. 

It’s a move that could give a boost to patient advocacy, especially if her stepmother moves into the White House.

Emhoff’s social media posts about pain and her lengthy list of potential treatments have gotten some pushback in the media, in part because one of the things Emhoff advocates for is ketamine infusions for chronic pain. The anesthetic has been a hot topic recently for its role in the drowning death of actor Matthew Perry. Last week prosecutors brought charges against five people who helped supply Perry with ketamine. 

Emhoff shared her chronic pain story via Instagram, where she has nearly 400,000 followers, writing that she was born with a tethered spine, which caused her back to not properly lengthen when she was growing up. That, in turn, caused kyphosis, an abnormally formed spine also known as a “hunchback.”

Emhoff said she was in and out of doctors’ offices for physical therapy for most of her adolescence, and then eventually got lower back surgery, which led to her growing taller. But she still has chronic back pain. 

After receiving a lot of responses to sharing her story, she then followed-up by sharing a link to a Google Doc list of pain management options, which she calls “The Big Pain Management List.” 

“Alright the responses have been COMING IN HOT. It's actually very comforting seeing how many people can relate to chronic pain and also very sad," Emhoff wrote, sharing a disclaimer about her list.

"These are all just recommendations made to me. These should not be taken as medical advice. I am just a girl tryna feel less pain."

INSTAGRAM

Emhoff’s list is broken down into six categories: devices, topicals, exercises, lifestyle changes and books. Most of the recommendations are probably common knowledge to anyone who's been dealing with chronic pain. But the list still offers a good, well-organized resource for anyone looking for new or old ideas to relieve pain. 

Under devices, she includes a firm mattress and red light therapy pad. For topicals, she suggests lidocaine patches and salt baths. Under exercises, Emhoff includes things like weighted squats and pilates. For lifestyle, she recommends things like shorter work days, “weed” and an anti-inflammatory diet. 

The therapies column is where she lists ketamine infusions, as well as somatic therapy and EDMR therapy. Under books, she recommends “The Pain Management Workbook" and “The Way Out.”

Personally, I find it a little disappointing that Emhoff never mentions one of the most effective pain treatments we have: opioid-based pain medication. It’s not as though she was worried about being controversial, given her inclusion of ketamine therapy. Perhaps opioids aren’t helpful for her, but they are helpful for millions of others dealing with chronic pain. 

Regardless, I’m always glad to see anyone with influence drawing awareness to the suffering those of us with chronic pain endure. My hope is that she will be able to push her powerful stepmom to advocate for broader access to some of her recommendations, such as ketamine and cannabis. 

Of course, because of Emhoff’s visibility and political connections, some publications covered her pain management suggestions as though they were controversial.  

The Daily Mail headline read: “Kamala Harris' woke step daughter pushes ketamine and shorter working days in excruciating Gen Z rant.”

The New York Post headline read: "VP Kamala Harris’ stepdaughter Ella Emhoff pushes ketamine, ‘shorter work days’ in ‘pain management’ rant."

It’s a little disappointing to see those types of headlines around the topic of chronic pain. My guess is that many of Emhoff’s followers suffer from chronic pain, and many of them may even benefit from her recommendations. But headlines like that can scare people away from trying treatments like ketamine, which is normally used for depression but some people find very useful treating some types of chronic pain. 

Thankfully, Emhoff has the ability to reach out to pain patients directly through her social media. So even if other media entities try to frame her suggestions in a poor light, she’s still able to get her message out to those who need it.

Why a Diagnosis Really Matters When You Have a Chronic Illness

By Crystal Lindell

Trying to get a diagnosis for chronic health problems is like being born with brown hair and dying it blonde your whole life because it feels mandatory. 

Then, after one dye job too many, you start to lose your hair in chunks, so you decide it’s time to get some help. But by then, everyone is invested in you being a blonde. 

You go to the doctor and they look at your dyed blonde hair, which you’ve been maintaining because of societal expectations. And they say, “Umm, you don’t look brunette?” 

Then, despite your very visible brown roots, the doctor accuses you of just wanting the label of “brunette” as a fad. You wonder if he’s right, while your hair falls out from bleach damage.

It took 5 years for me to get an official diagnosis of Ehlers-Danlos syndrome (EDS) after I started having serious health problems. The kind of health problems that cause you to go from an independent overachiever with 2 jobs and an active social life down to one job, moving in with your mom and spending so much time in her basement that your vitamin D drops to dangerously low levels.

It took me 5 years even though a couple years before I was diagnosed with EDS a doctor added  “benign hypermobility” to my chart. A notation that should have almost immediately led to the Ehlers-Danlos syndrome diagnosis, seeing as how I was clearly having issues that were not benign! 

It honestly makes me want to scream obscenities just remembering it. How casual they were about my life. How dismissive it all feels in retrospect. 

Lurk around any chronic illness patient group online, and you’ll see a similar refrain: Doctors don’t like to diagnose complex chronic health conditions. In fact, patients often have to figure out what they have themselves, and then find a way to present it to the doctor without offending them. I suspect this is why it takes an average of six years to get a diagnosis for a rare disorder. 

Or, if you want to torture yourself, spend time on the Reddit boards for verified medical professionals. There you’ll see the doctors confirming your worst fears: They do think you’re hysterical. They do think you just want attention. They do think the diagnosis that fits your condition is just a fad.

I want to make those doctors understand why none of that is true. I desperately search for the words to make them understand why a diagnosis matters so much when you’re suffering. Even if there’s no cure. Even if it doesn’t change the course of treatment. Even if you’ve already diagnosed yourself.

I grasp at metaphors that fall through the overextended joints in my fingers, desperately trying to make them understand the importance of a diagnosis.

I want to make my case so bad. To use logic and poetry to explain why naming things does actually matter. More than that, I want to make the case for the other patients who are suffering without even being granted the words to explain why.

My pleas fall to the ground though, because doctors don’t listen. Their minds are already made up. It’s all in our heads. And even if it’s not, they say, there’s no point in labeling it. 

They accuse you of just wanting a label to feel special, as though they — as doctors and nurses with their very own set of special letters after their names — aren’t obsessed with labels that make them feel special. 

Worse though, I suspect that somewhere deep down, the doctors know what I know: If a diagnosis did not matter, they wouldn’t be so stressed about not handing them out.

Naming things empower you. It gives you a sense of control over something that’s usually very uncontrollable. But more than that, it gives you the ability to explain it to others. To connect to another human being about your experience.

So yes, a diagnosis does matter. It matters immensely. I just wish I had a single word to explain exactly why. 

A Neurosurgeon’s Explanation of Why He Quit His Job Goes Viral

By Pat Anson

A former neurosurgeon who quit his job due to stress, anxiety, and a growing awareness that he wasn’t helping patients has become an internet sensation this summer.

“Dr. Goobie” (not his real name) posted a video on YouTube last month, explaining why he abandoned his practice and lucrative career performing surgeries on patients with chronic back problems.

“I had good partners. I had good hospitals that I worked at, but something was not right. I was very unhappy. On the surface, it didn't make sense. I was getting paid very well. It was a very well-respected job. I had good colleagues, had good support, but I was the most unhappy that I've ever been,” says Goobie, while on a hike swatting away mosquitoes with snowcapped mountains in the background.

Goobie’s video has gone viral with over 11 million views and nearly 64,000 comments, most of them expressing support for his decision to leave a high stress job in healthcare. His story is also a cautionary tale for anyone considering spinal surgery.

Goobie doesn’t give many personal details, but says he is 40 years old and lives in Washington state. He went to undergraduate school at the prestigious Massachusetts Institute of Technology (MIT), where he studied the potential for robotic arms and legs. When Goobie saw that wasn’t practical as a career, he enrolled in medical school to study neurosurgery.   

“Your job is to relieve suffering,” one of Goobie’s professors would say, an idealistic view of medicine that he shared and aspired to.

In practice, however, after his residency and nine years of performing surgeries, Goobie became disillusioned. It dawned on him that most of his patients with chronic back problems, like degenerative disc disease and spinal stenosis, weren’t getting better.

“I had learned all these fancy spine surgery techniques to do all this incredible surgery work through tiny cuts. It's called minimally invasive spine surgery,” Goobie explained. “I helped a lot of people out, but there were way more people that I couldn't help.

“There are so many people with back problems; neck pain, back pain, nerve pain down their arms and legs. Surgery might make them better for a little bit, but it didn't address what caused that disc to wear out, or the disc to bulge, or the joint to get loose, or the disc in between the bones to disappear, or the bones rubbing on each other. Surgeries don't address that.”

The Leaky Roof Problem

A colleague likened Goobie’s dilemma to a house with a leaky roof. Rain will ruin drywall and cause extensive water damage. You can replace drywall, take out moldy insulation and clean up the interior of a house, but if you don’t fix the leaky roof, the same problem will keep repeating itself.

“That's what I was doing. And the way I realized that is that I could do a perfect surgery, and some people would get better, some people would stay the same, and some people would get worse,” said Goobie.

“Some people would get better before I could operate on them. Even with gigantic bulging discs, they would get better. If I scheduled the surgery a month out, they would sometimes call me a week before surgery and say, ‘Hey Doc, you know my nerve pain is gone. Do I still need to do surgery?’ And that was very confusing to me.”

Why did some patients get better without surgery? Goobie started asking patients detailed questions about their lives and learned the ones who got better had low-stress, healthy lifestyles. They slept well, exercised regularly, had diets low in fat and salt, didn’t smoke, didn’t drink much, and had strong social networks.    

“DR. GOOBIE”

“And I saw that the people who did that, they would heal so quickly that I couldn't operate on them. I mean, sometimes I could, but if I was booked three or four weeks out, a lot of times people who were doing that, they would heal before I could do the surgery,” Goobie said.

“And the opposite was true. The patients that smoked like a chimney. They sat on the couch and they ate hot dogs all day. They had no friends. They were super stressed out. And they didn't sleep well. Those patients, I could do a really good surgery and I would get them temporarily better, but six months or a year later, the same part of their back would have a recurrent problem. Or a different part, a different joint in their back, would have a similar problem. And I would operate on them, and they might get better for six months, and then the same thing would happen. This is the leaky roof problem.”

The problem with the healthcare system, according to Goobie, is that it’s not designed to fix leaky roofs. It needs sick patients who stay sick.

“I'm not knocking any hospital or group that I worked with. I had the privilege to work with really amazing people in amazing hospitals, amazing institutions. But the way that everything is set up is that the hospital needs to make money. They need to grow economically,” said Goobie.

“The problem there is that if you figure out a way to help patients heal, in a way that doesn't include a pill or a surgery, then the hospital and the doctor are in big trouble. Because if you figure out a way to help people heal and you can't charge them for it, then you've just worked yourself out of a job.”

Hero or Snake Oil Salesman?

Other doctors applauded Goobie’s video, calling him “courageous” and “a hero” for speaking out.

“I really commend his approach to medicine and his goal of putting patient care and his own health first. That is not easy to do,” said Dr. John Y.K. Lee, who specializes in brain surgery.   

But some took offense at Goobie’s video, saying he made “numerous false claims” about the effectiveness of spinal surgery.

“He claims that degenerative spine changes can all heal with rest and nutrition, which is simply wrong,” Dr. Tyler Cole, a spinal neurosurgeon, said in a YouTube video of his own. “We all experience degeneration that can be delayed with good health, nutrition and exercise. But it is not magically reversed. You can’t regrow a disc that’s been worn down, despite what a YouTube snake oil salesman tells you.

“The biggest red flag is that he said his patients didn’t do well. If his patients aren’t doing well, it’s his own fault. Not every patient improves, but if a doctor is discouraged about many of his patients doing poorly, to the point of burning out, the doctor is to blame. It’s not some conspiracy to the point of making people sick.”

Goobie is currently unemployed and uncertain about his future. But he’s lost weight, sleeps better and feels much happier. He spends a lot of time outdoors hiking in the Cascade Mountains with his dog, Doobie.

He’s even launched a YouTube channel – appropriately called “Goobie and Doobie” -- in which he shares dozens of beautiful nature videos that feature bubbling streams, mountain meadows and high-altitude hiking..

“There are an infinite number of ways to go up the mountain and reach the peak. But there is only one peak,” Goobie explains. “We are all trying to get to the same place. It's okay to take different paths. We can all learn from each other.”

Goobie hopes his videos will help people sleep better, relax and refocus. It’s the prescription he learned from patients for his own healing.

“I found that hearing those nature sounds really helped; helped me feel better, helped me process what was going on better, be more present and aware, and release that stress and anxiety’” Goobie says. “That's how I came to where I am now. By letting go of neurosurgery, I am able to be outside and be healthier. My dog is able to live a fuller life, and I figured out a way that I can help relieve people's suffering.”

Just like his professor told him.

A New Therapy Can Help Relieve Painful Emotional Trauma

By Laurel Niep

If you’ve been to a therapist’s office in the past few years, there’s a good chance you’ve heard of eye movement desensitization and reprocessing, or EMDR, therapy.

Most commonly used for treating long-standing and acute traumas, EMDR is also being shown to help with some kinds of chronic pain.

A growing body of studies shows that EMDR can be used to effectively treat a variety of conditions, such as substance abuse, specific phobias and anxiety that occurs alongside symptoms stemming from a trauma. More studies are needed, but results so far are encouraging.

I’m a trauma therapist who was trained in EMDR in 2018. Since then, I have consistently used this approach with dozens of clients to work through trauma and deeply held negative core beliefs.

EMDR and Traditional Therapy

Eye movement desensitization and reprocessing was developed in 1987 by Dr. Francine Shapiro after she discovered that moving her eyes from her left foot to her right as she walked – in other words, tracking her feet with each step – resulted in lower levels of negative emotions connected with difficult memories, both from the more recent frustrations of the day and deeper events from her past.

Conventional treatments, such as cognitive behavioral therapy or dialectical behavioral therapy, rely on extensive verbal processing to address a client’s symptoms and struggles. Such therapy may take months or even years.

Depending on the trauma, EMDR can take months or years too – but generally, it resolves issues much more quickly and effectively. It is effective for both adults and children, and can be done remotely.

EMDR is an evidence-based therapy that can help people process trauma in ways that other forms of treatment cannot.

EMDR has the capacity to work faster by targeting negative thoughts and emotions in combination with what is called bilateral stimulation – that is, the use of eye movements, tapping, audio or tactile sensations to process the emotions.

The most common form of bilateral stimulation is when the patient holds their head steady and uses their eyes to follow the therapists’ finger movements back and forth. Patients may also wear headphones that alternate music from ear to ear, or a tone that goes back and forth. Another common technique is having the patient hold a small buzzer in each hand that alternates vibration back and forth. Sometimes, therapists alternate tapping on each of the client’s hands or knees.

Some practitioners equate it to adding conscious thought to what the brain is trying to do during rapid eye movement, or REM, sleep. During this stage of sleep, the eyes go back and forth under your closed eyelids as you’re dreaming.

How EMDR Works

Researchers are still working out exactly how and why EMDR is effective at helping patients heal from trauma.

Trauma is a physiological and psychological response to an event where one perceives a threat to their safety – or to someone close to them – that is so severe, it overwhelms their capacity to cope.

The traumatic event can give rise to various symptoms that affect daily life, such as anxiety, depression, mood swings, intrusive thoughts, hypervigilance, difficulty sleeping or changes in appetite or weight. Sometimes, the person has thoughts of self-harm or suicide.

The trauma can also leave one with various triggers – sights, smells, sounds, locations, phrases – that bring up memories of the event. This causes the person to relive the emotions or reactions they had when the trauma initially occurred, as if it’s happening again.

For example, on a stroll through a crowded mall, someone who had been assaulted months earlier might catch a whiff of the same cologne the perpetrator was wearing. As the smell of the cologne triggers them, they suddenly feel like they’re experiencing the assault again, including physical sensations and seeing images of the event.

Dislodging Trauma

Memories of traumatic events often become stuck in the brain’s limbic system, where the fight, flight and freeze response resides. This is not the place where memories are intended to be stored. Here, the memory is triggered by various experiences in daily life – a similar sound, smell, sight or sensation – that can make the client feel as if the trauma is happening again in that moment.

Targeting the traumatic memory while engaging in bilateral stimulation during EMDR allows the brain to highlight and move the memory from the limbic system – where it cannot effectively connect to other critical information or memory networks – to the prefrontal cortex and other cortical brain regions where the memory is better able to be processed and supported.

Certain places, disturbing noises or large crowds can trigger traumatic memories.

EMDR therapy is a multistep process. Together the patient and therapist first identify targets, meaning the specific traumatic memories to be addressed during the reprocessing phase.

Next, the patient is asked to associate the event with a negative thought about themselves linked to the trauma. For example, I might say, “And when you think about the worst part of that event, what is a negative thought you have about yourself?” Often something comes up along the lines of “I’m unlovable,” “I’m worthless” or “I’m not worth protecting.” The patient is also asked to identify and locate any physical sensations they might be having in the body.

Then the therapist will ask the client to focus on all three of those things – the specific trauma memory, the negative thought about themselves and where they feel it in their body – while applying some form of bilateral stimulation.

EMDR in Practice

Although trauma therapy is a very individualized experience, research shows that 80% to 90% of clients can process – meaning resolve – a singular traumatic event with only three sessions of this therapy. In one initial study study from 1998, past experiences such as post-traumatic stress disorder from combat were resolved in 77% of participants after 12 sessions. Other research suggests that for patients who have suffered chronic trauma or abuse, more treatment time is likely needed to resolve the symptoms stemming from the trauma they survived.

In this context, resolve means that the target thought or memory has been cleared and the impact should be greatly reduced – not that the person will no longer have any negative thoughts or emotions about it.

If a patient has multiple traumas, I’ll ask them to identify the memories that stand out the most. The therapist will start with the earliest of those memories and work toward present day. One memory at a time is focused on, and once it has been completely processed – there’s no more disturbance in the body when thinking of the memory – then the therapist and patient move on to the next one.

One of my patients had struggled with devastating childhood memories of verbal, emotional and physical abuse by their parents. This consistently affected their relationships with family and peers into adulthood. After working with EMDR, the patient was able to process the haunting memories, gain insight on setting boundaries with others, and provide comfort and guidance to the young child they once were.

Another patient was a high school student, afraid to leave the house after enduring an assault on the way home from school. Concrete, visible changes began after the second session. School attendance became more consistent; grades improved. “I don’t understand what’s happening,” said the patient. “It’s like magic. I’m not so scared anymore.”

But EMDR is not magic. It is a unique strategy that allows the client to approach the trauma in a different way. The client is able to think about the events they are affected by and engage with the support of the therapist without having to verbalize each detail of their trauma.

Finding EMDR Specialists

If you’re considering trying out eye movement desensitization and reprocessing therapy, find a therapist who is trained or certified for this treatment. The EMDR International Association website has a list of them, though there are many other qualified therapists not affiliated with that organization, and you could ask about a clinician’s credentials before beginning treatment with them.

If you’re struggling daily with past trauma or deeply held negative beliefs about yourself, are willing to delve into those difficult emotions and would like to try a different type of therapy backed by research, I would strongly recommend giving EMDR a chance.

Laurel Niep, LCSW, is a Trauma Therapist and Senior Instructor with the Stress, Trauma, Adversity Research, and Treatment (START) clinic in the Department of Psychiatry at the University of Colorado School of Medicine.

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

The Pride and Prejudice of Living with Disability

By Mia Maysack

July was Disability Pride Month, and as much as people with disabilities deserve recognition, I could not help but have mixed feelings about it.

Disability awareness should not be a one-time event, something that is condensed to a single month, week or day on a calendar. I find that borderline hypocritical. We don't need support when it's convenient, fits neatly into a schedule, checks off some sort of box, or simply looks good.

What we're truly in need of is life-giving care, resources, accessibility and validation --- every single day. I believe the difficulty in achieving those goals comes down to adequate funding and the attitude of the general public, who more often than not separate themselves from the most vulnerable among us.

The overall health and well-being of a society is a collective responsibility that we all have a role to play in. Until we actively participate, we'll remain dependent on systems that are rigged against us, often due to distractive barriers such as class, sex, race and ableism.

Many of us who live with a disability understand that all it takes is a slight shift in circumstance to completely alter or change your life. Each of us are only an accident or diagnosis away from a completely different and more challenging existence.

Why is it we must wait for those challenges to happen to us personally, or to someone we know and care about, before we genuinely begin to give a damn? 

On the one hand, I am proud as hell to be a part of this disabled demographic. We not only continue to choose life, but we do so under scrutiny and circumstances that countless others don't have to worry about or take into consideration.

We not only cope, but face obstacles that more able-bodied individuals don’t even think of, such as the lack of wheelchair ramps, mobility obstacles, lack of transportation, or even the successful completion of the most mundane and basic chores of living.

On the other hand, what is it that I am supposed to be “proud” of exactly?  That it took me three attempts to complete one bathing session? That I was exhausted afterwards to the point of needing to spend the rest of the day recuperating?  Am I to be prideful that I exist in a country that persistently claims not to discriminate, but blatantly does so? 

Is it pride-worthy that I’m essentially punished for being unwell, while also being expected to someday improve -- without being granted adequate or proper accommodations to do so?  

Are we to figuratively jump-for-joy over the fact that we have to beg, plead and consistently “prove” the legitimacy of our disability, while simultaneously being condemned, doubted, judged and looked down on as burdens on society? 

Should I celebrate the fact that if I find work, fall in love or get married -- or God forbid make a dollar over my government allowance -- that I run the risk of my disability benefits being terminated?

If we don’t work at all, we are lazy bums. And if we get a job, then we were faking it! 

These are egregious injustices that keep us dependent. We’re treated as if we should be thanking our lucky stars for the ability to merely exist, with little awareness of the demands that it requires or the extensive toll that it takes.

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

The Best Advice for Someone New To Chronic Pain: Sleep

By Crystal Lindell

If you’re new to chronic pain, try your best to get some sleep. 

Whether you use a pill, a sick day, a babysitter, or some combination of all three — your first priority is to get a really good, restful night of sleep. 

Nothing can be dealt with before that happens, but everything will feel more manageable when you wake up. 

As someone who writes about chronic illness, people often reach out to me when they or someone they love suddenly finds themselves dealing with a new health issue. And my first piece of advice is always the same: YOU NEED TO SLEEP. 

Chronic illness – especially chronic pain – has a way of eating away at your sleep like a party full of toddlers grabbing chunks of birthday cake. Even if you lay in bed all night long, true sleep can easily evade you. 

Lack of sleep will make you crazy so much faster than you think it will. It will make every problem you face impossible. And it will make every interaction you have with humans or pets infuriating. 

When I first started having chronic pain at age 29, I did not understand any of this. At the time, I was working two jobs, with one requiring a daily hour-long commute each way. I was secretly proud to be living on as little sleep as possible, long before I started having serious health issues.

I thought I was the type of person who could easily live on little-to-no sleep. But there’s a big difference between getting five hours of sleep, going to work, then coming home to crash for 10 hours versus getting less than two hours of sleep a night for multiple nights in a row.

I didn’t realize how much sleep my new pain was stealing from me. And I didn’t realize just how quickly it would start destroying my will to live.

During one early pain flare, before I had any of the tools I have now to manage such things, I was awake for like five days straight. I say “like” because that week is kind of a traumatic blur. It was only a few days, but it felt like a month. 

After one of the first rough nights, I showed up at my primary care doctor’s office before it even opened, begging for help. Another day, I went to an urgent care clinic. By the end of the week, I was laying on my living room floor planning ways to kill myself. 

It doesn’t take long to reach really dark places when you aren’t getting enough sleep. And lack of sleep will make almost any physical pain worse too. Combine those two things, and it’s easy to mistakenly start convincing yourself that being alive is the wrong choice. 

Eventually, a pain doctor gave me a strong antidepressant and sleeping aid called amitriptyline, and I finally got some real rest. Of course, like any strong sleep aid, it came with a lot of side effects. It made me very tired in the morning, sometimes making it impossible to get up for work. It made me gain unwanted weight. And it left me groggy throughout the day. 

But after going days without sleep, those were all side effects I was happy to accept. 

Bodies need the power reset that sleep is supposed to provide, both mentally and physically. When you don’t get that, things get scary glitchy fast.

So if you’re new to chronic pain, do whatever you need to do to get some sleep. And if you aren’t able to get the sleep you need with the tools you have at home, do not hesitate to go to the doctor or even the emergency room. Sleep is that important. 

After a few nights of real rest, then you can start to tackle the rest of the ways your newfound health issues are affecting you. Because trust me, there'll be plenty of time for all that in the morning. 

Patients and Providers Say Cannabis Helps Reduce Opioid Use

By Crystal Lindell

More than half the pain patients certified in New York state’s medical cannabis program say they’re using cannabis as an alternative to opioid medication. 

That’s great news for patients who see real benefits from cannabis, but we have to be careful to avoid further demonizing opioids when data like this is released. Using something as an alternative doesn’t show that it’s necessarily more effective or more helpful. Often, it just means that something is more accessible. 

The data comes from the New York State Office of Cannabis Management’s 2023 Patient and Provider Survey Report, which was recently released. This was a large survey that collected responses from 10,781 patients and 265 providers enrolled in the state’s medical cannabis program. 

“Findings from both the patient and provider surveys demonstrate that medical cannabis is effective for pain management and has the potential to reduce the use of opioids,” the report found.

About 57% of the patients were pain sufferers, making pain the top condition for using cannabis, followed by post-traumatic stress disorder (24%), neuropathy (19%), spasticity (11%), rheumatoid arthritis (11%), inflammatory bowel disease (10%) and cancer (8%).

The survey found that 66% of patients think medical cannabis helped reduce their use of opioids for pain management.

The providers were largely in agreement, with 83% saying “medical cannabis should be used to reduce the use of opioids for pain management” and 75% saying cannabis poses less risk than opioids. 

However, this is where I start to raise my eyebrow a bit. 

It makes me nervous that so many providers see cannabis as being safer than opioids. The fact that 25% of them don’t is also a telling statistic. It means the data on this is unclear.

All substances have side effects. Both patients and providers understand this. In a just world, patients should be able to make the choice about which substances or medications they use, after factoring in their own preferences for what side effects are acceptable as a tradeoff for pain relief. 

Even if it was proven that cannabis is significantly safer than opioids for managing pain, that doesn’t mean it’s just as effective as opioids. Personally, I don’t find cannabis to be very effective at all for treating my pain. I also really dislike how sleepy it makes me. For my life and my needs, opioids remain a much better option. 

I’m lucky enough to have a recurring prescription for opioid medication. But for patients who can’t get an opioid prescription, they don’t truly get a choice or “alternative.” Cannabis may be their only legal option. 

The New York State report also shows me that it’s long past time to make cannabis legal at the federal level. It’s clear now that classifying cannabis as an illegal controlled substance never had any foundation in health concerns. Clearly, cannabis can help treat a large number of medical conditions. And many people get health benefits from using it. 

A lot of drugs that are classified as harmful controlled substances can still be obtained by prescription. And some that are not “controlled” are potentially more dangerous than cannabis. That doesn’t make any sense, but that’s how the system is set up under the Controlled Substance Act. 

The way that cannabis has been slowly legalized across the country should make us take a long look at all of our drug laws. There are many illegal substances, such as psychedelics, that could potentially help people manage health conditions – but only if they had access to them in the same way most Americans can now access medical or recreational cannabis. 

If nothing else though, cannabis’ slow legalization has given me some hope. I can remember even 25 years ago, being in college, listening to guys in dorm rooms ramble on about how cannabis would be legalized someday. I confess I didn’t believe them. At the time, it felt impossible. 

Turns out, I was wrong. Now I just hope we don’t stop at cannabis. 

FDA Flip Flops (Again) on Kratom

By Pat Anson

The Food and Drug Administration can’t seem to make up its mind about kratom.

Just 10 days after publishing an initial notice in the Federal Register seeking public comment on a study about the risk and safety of kratom and psychedelic substances, the agency abruptly withdrew its request.

“FDA no longer intends to proceed with the proposed study as described because circumstances occurred necessitating changes to the scope of the study,” the FDA said in a brief statement, without explaining what “circumstances” changed.

Kratom is an herbal supplement made from the leaves of a tree in southeast Asia, where it has been used for centuries as a stimulant and pain reliever. In recent years, millions of Americans have discovered that kratom can be used to treat pain, anxiety, depression and addiction. The FDA takes a dim view of that, because it has not approved kratom for any medical condition.

“Notably, kratom's unapproved status does not appear to have diminished its growing popularity, with people using kratom to reportedly ‘treat’ certain health conditions. Its chemical affinity with opioid and use among patients with opioids use disorder as a ‘treatment’ is of public health concern for the Agency,” the FDA said in its August 2 notice. “The use of this substance, that has yet to be tested and determined safe for use in human population by the Agency, is a significant concern.”

The FDA seems particularly interested in studying how consumers buy kratom or psychedelic substances, what benefits they get from them, and whether “marketing strategies nudge purchase and affect use demand.” The FDA hired a market research firm, the Brightfield Group, to conduct an “Exploratory Behavioral Economics Study” to see what motivates kratom and psychedelic users.

The agency could have saved itself some time and money by looking at the findings from a PNN survey of 6,150 kratom users. Over 90% said kratom was “very effective” at treating pain and other medical conditions, and 98% didn’t believe kratom was harmful or dangerous.

‘Embarassing Mistake’

Kratom advocates say the FDA’s withdrawal of the study notice was the “latest embarrassing mistake” the agency has made about kratom.

In 2016, the FDA joined with the DEA in proposing that kratom be classified as an illegal Schedule I controlled substance, a request that was later withdrawn due to the “significant risk of immediate adverse public health consequences” if kratom was banned nationwide. A top federal health official said FDA staff based their scheduling request on “embarrassingly poor evidence & data.”

“The FDA’s few anti-kratom staff are repeatedly undermining the Agency’s credibility on harm reduction strategies,” Mac Haddow, Senior Fellow on Public Policy at the American Kratom Association (AKA), said in a statement. “The FDA remains trapped in the web of their own making that unfairly demonizes products like kratom and psychedelics that, when properly used, are helping people who struggle with addictions and mental health issues and that are saving lives.”

Others disagree about kratom’s safety. The Brightfield Group is tracking social media posts about kratom and is reportedly seeing more online discussions about its risks and addictive properties. While hundreds of deaths have been linked to kratom use, most cases involve other drugs and illicit substances, making it difficult to determine the exact cause of death.  

“Describing kratom as a ‘benign botanical supplement’ is dangerously misleading. Kratom has documented risks, including addiction potential. Downplaying these risks does a disservice to consumers,” says attorney Matt Wetherington, who represents the family of Ethan Pope, a Georgia man who died after consuming a potent kratom extract called Black Liquid Kratom, made by Optimized Plant Mediated Solutions (OPMS).  

Pope’s family has filed a wrongful death lawsuit against OPMS, as well as the AKA and other kratom vendors. The FDA issued a recent alert urging people not to ingest Black Liquid Kratom, a warning the AKA has characterized as a “coordinated effort” by trial lawyers to drum up more clients for a class action lawsuit.  

“The AKA's overall combative tone towards the FDA and trial lawyers is counterproductive. Constantly framing regulators as enemies undermines opportunities for constructive dialogue that could actually benefit kratom users,” says Wetherington. “No one but the FDA actually knows why they withdrew the request to study. Speculating beyond their stated reason is a fool’s errand.”

A New Study of Opioid Addiction Only Muddies the Water Further

By Pat Anson

Over the years, hundreds of studies have been conducted to determine how common it is for a pain patient on long-term opioid therapy to become addicted. Estimates range from less than 1% to more than 80% of patients developing opioid use disorder (OUD), also known as problematic pharmaceutical opioid use (POU).

The wide variation in estimates is largely due to conflicting definitions, terminology, study design and biases. Is a patient misusing or abusing prescription opioids? Do they show signs of dependence or withdrawal? It literally depends which study you read.

New research that tries to settle the matter may have only muddied the water further.

A team of researchers at the University of Bristol conducted a meta-analysis of 148 clinical studies involving over 4.3 million patients in North America and the UK who were treated with opioids for chronic non-cancer pain. The 148 studies were all that was left from nearly 5,300 that were initially screened and rejected for various reasons — which should tell you a lot about the quality of studies that are out there.

“Clinicians and policy makers need a more accurate estimate of the prevalence of problematic opioid use in pain patients so that they can gauge the true extent of the problem, change prescribing guidance if necessary, and develop and implement effective interventions to manage the problem.  Knowing the size of the problem is a necessary step to managing it,” said lead author Kyla Thomas, PhD, Professor of Public Health Medicine at the University of Bristol.

Thomas and her colleagues included studies in their review that reported any sign of POU, such as abuse, tolerance, addiction, dependence, misuse, substance use disorder or “aberrant behavior.” The latter includes seemingly benign behavior like a patient being poorly dressed or unkempt in appearance, canceling or missing an appointment, asking for a specific drug, or even just complaining about their pain.

In some studies, “misuse” was defined so broadly that it included patients who stopped using opioids because their pain went away or they took a pill less often than recommended. A patient like that might be suspected of hoarding or even selling their unused medication.     

In other words, the researchers cast a pretty wide net on what constitutes OUD. And they hauled in a lot of fish.

Their findings, recently published in the journal Addiction, estimate that nearly one in ten pain patients (9.3%) are dependent on opioids and have OUD.

Nearly a third (29.6%) have “signs and symptoms” of dependence and OUD, and over one in five (22%) displayed aberrant behavior.

“Prescription painkiller misuse and addiction are widespread in chronic pain patients” is how the University of Bristol trumpeted the results in a press release, with the lone caveat that “these findings should be interpreted with caution.”

‘OUD Is Everywhere’

Critics of the study were quick to point out that equating dependence with opioid use disorder is misleading at best – the equivalent of a diabetic dependent on insulin being labeled with “insulin use disorder.”

“This is just one more paper, one of zillions, that seizes upon some outcome measures that have poor or no basis in science and that are not in any way indicative of addiction,” says Stephen Nadeau, MD, Professor of Neurology at the University of Florida College of Medicine. “As is so common, it favors the ridiculous notion that OUD is everywhere.”

Nadeau says any patient on daily opioids will experience symptoms of dependence or withdrawal if their medication is suddenly stopped. Neither is a clear sign of addiction or substance use problem, just as a patient asking for a higher dose is not necessarily a symptom of OUD.

“There is never any recognition of the ubiquitous phenomenon of pseudo-addiction: a patient in desperate pain asks for an increase in dosage. Instead of the request being interpreted at face value, the patient is branded with the diagnosis of OUD and booted from the clinic,” Nadeau told PNN.

Being “branded” or stigmatized is something that chronic pain patients like Brett Bradford are all too familiar with. He thinks the new addiction study will only result in more patients being taken off opioids.

“All physicians coming out of med school are being taught these hyper anti-opioid policies. This is only going to fuel things to get worse,” said Bradford. “This madness will not stop until opiates are totally off the market and nobody will be able to get any pain meds for any reason, short of being on their death bed. Maybe. If they are lucky.”

An Insider’s Perspective on CDC’s ‘Disastrous War on Opioids’

By Pat Anson

Dr. Charles LeBaron is a medical epidemiologist who worked for 28 years at the Centers for Disease Control and Prevention. LeBaron was not directly involved in developing the CDC’s 2016 opioid guideline, but knew colleagues who did and largely supported their efforts to rein in opioid prescribing.

Then LeBaron developed crippling pain from a meningitis infection and learned firsthand how the CDC guideline was harming patients. While hospitalized, he screamed into his pillow at night because a nurse -- following the CDC’s recommendations -- gave him inadequate doses of oxycodone. The pain relief only lasted a couple of hours, and then he had to wait in misery for the next dose.

“I hadn't experienced the pain that so many patients feel, so I hadn't had the level of sensitivity to the issue that would have benefited me. It took full personal experience to straighten me out,” said LeBaron. “You'd rather be dead than in pain. In that bubble of pain, it really is life changing.

“Once you experience that, you tend to view things very differently through a very different lens. At least that was my experience. There was nothing like being in acute pain.”

LeBaron eventually recovered from the infection and no longer needed oxycodone. He also didn’t become addicted. That lived experience made him wonder if the CDC -- his longtime employer – made mistakes in developing the guideline. He came to recognize that the CDC’s push to limit opioid doses was based on weak evidence and the false presumption that many patients quickly become addicted.

Most of all, he was shocked at how quickly the CDC guideline was adopted throughout the healthcare system. He’d never seen anything like it, in all his years at the agency.

“Most of the recommendations we come out with, that people should eat right, exercise or whatever, no one ever bothers doing. We have a tough time getting people to do things. This recommendation? They just had remarkably fast implementation,” LeBaron told PNN.

“I've never seen a recommendation that got implemented that fast and that hard by so many actors. Normally, it’s like herding cats in public health, trying to get everybody involved. And for prescription medications, there are a million cats. There are pharmacies, benefit managers, physicians, insurance and so forth. This thing just took off.”

Now retired, LeBaron decided to write a book about his personal experience with pain, along with a critique of the CDC guideline. “Greed to Do Good: The Untold Story of CDC’s Disastrous War on Opioids” gives a rare insider’s look into how the agency works and thinks.

The word “greed” may suggest there were financial motives behind the CDC guideline, but LeBaron says it’s more a matter of pride and hubris that borders on institutionalized arrogance.

The agency was so caught up in its reputation as the “world’s premier public health agency” -- one that defeated polio, smallpox, HIV and other infectious disease outbreaks -- that it developed an outsized belief that it could do no wrong.

According to LeBaron, that was the mindset that Dr. Tom Frieden had when he was named CDC Director during the Obama administration. While serving as New York City’s health commissioner, Frieden led ambitious campaigns to stamp out tuberculosis, ban smoking in public places, and limit unhealthy trans fats served in the city’s restaurants.  

At CDC, LeBaron says Frieden became “the driving force” behind a campaign to limit opioid prescriptions as a way to reduce rising rates of opioid overdoses.

“I would not attribute vicious and evil impulses to the people who were involved,” says LeBaron. “I think they were gravely mistaken, but not driven by the desire to harm. They conceived of themselves as wanting to do good in a very emphatic fashion.

“The problem here was not the motivation, the notion that if you can kind of reduce prescription opioids, maybe you'll reduce subsequent addiction. The problem was not looking at the thing sufficiently quantitatively and then not checking the consequences, or at least responding to the consequences when they're brought to your attention.”

People working in public health are normally careful about tracking the outcomes of their policies. But before and after the CDC guideline, the agency turned a deaf ear to a chorus of complaints that it was forcing millions of patients on long-term opioids into rapid tapers that resulted in uncontrolled pain, withdrawal and even suicide.    

Worst of all, the number of fatal opioid overdoses doubled to over 80,000 annually after the guideline’s release, an outcome that demonstrated CDC had gone after the wrong target at the wrong time and with the wrong solution.

“The typical person who's having an overdose is a 30-year-old male taking illicit medication. The most typical person who's getting chronic opioids for pain would be a 60-year-old woman with a variety of rheumatological conditions. So you're aiming at a completely off-center target,” LeBaron explained.

“Then subsequently the data started coming in that, in effect, you are worsening the situation. If you take people who really need pain control off their meds, in a sense, it normalizes illegal acquisition.

“If somebody is really in terrible pain, needs opioid medication and can't get it through the legal system, pain is a remarkable motivator. Very few motivators are as strong as pain. And ultimately, somebody will come up to you and say, ‘I know a guy.’ And sure enough, then you end up with completely uncontrolled, unregulated stuff.”

Not until 2022 did the CDC revise its original guideline and give doctors more flexibility in prescribing opioids. By then, its 2016 recommendations were so ingrained in the U.S. healthcare system that the revisions had little, if any, impact.

Frieden left the CDC in 2017. LeBaron says Frieden’s two immediate successors did little to address the overdose crisis and the harms created by the guideline. But he does have hope for the agency’s current director, Dr. Mandy Cohen, because she has experience in public health and a better understanding of the primary role played by illicit fentanyl and other street drugs in the overdose crisis.

Asked if the CDC guideline should be scrapped or withdrawn completely, LeBaron is circumspect. He thinks a review of the guideline is in order, as well as a return to public health policies that are checked and double-checked to make sure they have outcomes that actually work.

“The difficulty here, in my opinion, is many of the same problems continue to exist, even though the personalities are completely different, and there are still significant restrictions on people in chronic pain for no apparent benefit. There continues to be very high rate of overdoses,” LeBaron said.

“I'm kind of a diehard public health guy. I want to see whether anything good happens. Nothing good happened. Time to reconsider.”

Research Confirms What Women Already Know About Sex Bias in Pain Care

By Crystal Lindell

There’s a new study showing that doctors take pain reported by male patients more seriously than female patients. And I have to say – why are we still doing studies on this? 

Anybody who’s been paying attention already knows this is the case. We have known it’s been true for decades. What we actually need are studies on what can be done to effectively fix this sex bias. 

For the sake of relaying this important information one more time though, let’s look at the study, which was published in the journal PNAS. The researchers did an analysis of emergency room patient data in the U.S. and Israel, which showed that there is medical bias against female patients in pain management decisions.

They analyzed more than 21,000 patient records and found that female ER patients across every age group were consistently less likely to receive pain medication compared to male patients with similar complaints. 

Depressingly, this bias persists across different ages, pain levels, and even physician gender. Which means female doctors are just as guilty as male doctors.

"This under-treatment of female patients' pain could have serious implications for women's health outcomes, potentially leading to longer recovery times, complications, or chronic pain conditions,” says Shoham Choshen-Hillel, PhD, Associate Professor at The Hebrew University of Jerusalem.

Yeah – and pardon my French here, but – no shit. Like I said, anyone who’s been paying attention has known this for a long time. Many of us have already been living with the so-called “serious implications.” 

Way back in 2014 – a full decade ago – I wrote about my experiences as a woman in pain. At the time, I wrote: 

“Being in pain every day, all day, is hard. But when you’re a woman, there’s a whole extra layer to the situation that makes everything that much harder… 

Like did that male doctor just give me Aleve for my level-10 pain because he really thinks that’s going to help? Or did he just think that, as a woman, I was probably exaggerating?”

Now that I’m 10 years older, and 10 years more experienced as a patient with chronic illness, I can answer my own question: Yes. He definitely thought I was exaggerating. 

But I’m not the only one who’s been talking about sex bias in pain care for a long time. 

The advocacy organization for women in pain, “For Grace” was founded in 2002 – more than 2 decades ago! Their mission is “to increase awareness and promote education of the gender disparity women experience in the assessment and treatment of their pain.” 

A 2001 study of gender bias in the Journal of Law, Medicine & Ethics was given the headline "The Girl Who Cried Pain: A Bias against Women in the Treatment of Pain." 

And here's another one from the last century (1996) in The Journal of the International Association for the Study of Pain titled, "Gender variations in clinical pain experience"

The fact that female pain isn’t taken as seriously as male pain is not new! 

Solutions Needed

Researchers behind the latest study do call for solutions, asking for “urgent policy interventions to address this bias and ensure equal pain treatment regardless of sex.” 

Specifically, they recommend training programs for healthcare professionals to recognize and counteract sex bias, and say pain management protocols should be revisited to ensure fair and adequate treatment for all patients.

All great ideas. But not really new ones. 

Now we need new training programs to undo the ingrained patriarchal bias among doctors. Because whatever they’ve been trying clearly isn’t working. 

Continuing to do more and more research showing that what women have been complaining about for decades is true doesn’t help anyone. We need solutions. 

This is where I’m going to get a little bit radical. Because personally, when it comes to pain treatment, I already have a very good solution: A lot more pain medication needs to be sold the same way alcohol is – over the counter. We cannot trust doctors – even female doctors – to give it to women when we need it.

This would not solve the problem of female pain being ignored, but it would at least provide some immediate relief for women, as well as others, who often have their pain ignored because of sexism, cultural bias, racism and classism. 

This is also a large part of why I believe pain control and access to pain medication is a “my body, my choice” issue. Until we have medical training that can actually undo thousands of years of sexism, we should all have the legal right to treat our own pain when doctors refuse to take it seriously.  

In the meantime, we don’t really need more studies showing that there’s a sex bias in pain treatment. They’re essentially a waste of time at this point. What we need are solutions to a problem that millions of people have been aware of for a very long time.

Telehealth Offers More Convenience and Options to Rural Patients

By Crystal Lindell

I live in rural northern Illinois, near the Wisconsin border, which means like a lot of people in my area, I cross the state line to get most of my medical care. 

My location also meant that when telehealth appointments became more common post-2020, I wasn’t allowed to do the call from my house. Hospital administrators told me that I had to be within the state of Wisconsin to see my doctor. 

Thus, anytime I had a telehealth video call, I got in my car and drove about 45 minutes north across the Wisconsin border – all so I could park my car at a truck stop and call the doctor. 

My doctor’s actual office is another 45 minutes away, so this method was still preferable to driving 90 minutes each way to see him in person. But it wasn’t ideal, especially in the winter. I remember being completely bundled up with a hat and a hood covering my head, trying to tell my doctor about my current health status as horns from semi trucks blared in the background. 

Yes, I probably could have just lied and taken the telehealth call closer to my house, but aside from the fact that I don’t like lying, I also didn’t know if the hospital’s telehealth software had GPS that could locate where I was. I didn’t want to risk it. As a patient who takes a controlled substance medication, I don’t have the luxury of bending rules, lest I get in trouble and potentially even risk my prescription.  

Thankfully, after doing this driving slog for a few telehealth appointments, something was worked out between Wisconsin and Illinois to where I am now able to do telehealth appointments from my home. And because a lot of doctor appointments for my chronic health condition are just check-ins, I have to tell you – telehealth is amazing. 

I truly love that it not only saves me from a long drive for appointments, it also means I don’t have to be exposed to whatever germs may be circulating at my doctor’s office. If there was any good to come from COVID, it’s that it finally pushed telehealth into the mainstream. 

Of course, with each advancement comes consequences. A recently updated study published in the Review of Financial Studies found some potentially bad news about telehealth: It hurts rural hospitals and medical providers, many of whom are already struggling.  

The researchers found that as rural patients opt for telehealth appointments with urban healthcare providers, rural healthcare systems lose patients. Then things start to spiral downward, as the loss of patients means they have less money to invest in both capital and staffing, which means they offer even fewer services. Then they lose even more patients to urban telehealth providers. 

“Rural hospitals are losing, on average, a lot of money,” says co-author Zihan Ye, assistant professor of finance at the University of Tennessee at Knoxville.

Ye says patients who choose remote healthcare primarily because of convenience should consider the long-term financial ramifications, as should policymakers who have the power to influence which providers can afford to offer telemedicine at all.

However, I have to point out, that’s a big ask for sick people. It should not be the job of patients to consider the “long-term financial ramifications” of providers. 

I would love to have a healthy, functional rural healthcare provider closer to me, but I also would counter that rural healthcare abandoned us long before we resorted to telehealth. 

I don’t drive 90 minutes each way to see my doctors because I enjoy road trips. I have been doing it since 2013 – long before telehealth appointments were a feasible option. 

And I do it because I tried and failed to find a doctor closer to me, who could handle the complex medical needs that come with having a chronic illness. Even if I could have found a primary care doctor near me, there aren’t many specialists in my area and there haven’t been for a long time.  

Ideally, governments and hospital systems will work to expand rural healthcare networks over the coming years. But patients, unfortunately, can’t count on that happening. Until we see real progress, the answer seems pretty straightforward: Using the tools we have right now to solve the problems we face today. 

For many rural patients, that means using telehealth appointments to their full potential. Even if it means sometimes attending them in a truck stop parking lot. 

'Screaming Woman' May Have Died in Agony 3,000 Years Ago

By Pat Anson

The ancient Egyptians were well practiced in using natural substances as medicine. Opium was used as an analgesic and to help people sleep. Willow tree bark (later used to develop aspirin) was used as an anti-inflammatory and pain reliever. Extracts from carob trees were used as antidepressants. And they rubbed moldy bread on infected wounds centuries before penicillin was discovered.

“The range of conditions treated and the various conservative and surgical treatments used are astounding,” a German oncologist wrote after spending a year studying the history of Egyptian medicine.

But those ancient remedies failed when it came to treating a middle-aged Egyptian woman who apparently died in agony 3,000 years ago. Her mummy was discovered in 1935 and soon became known as the “Screaming Woman” because her mouth was wide open, as if locked in a permanent scream.

Only recently have researchers used CT scans and other advanced imaging techniques to “virtually dissect” her body and learn more about her life and death. Their findings were recently published in Frontiers in Medicine.

“The Screaming Woman is a true ‘time capsule’ of the way that she died and was mummified,” said lead author Sahar Saleem, MD, a professor of radiology at Kasr Al Ainy Hospital of Cairo University.

Saleem and her colleagues estimate the woman was about 48 years old at the time of her death and suffered from mild arthritis of the spine.

Her body was unwrapped and in good condition – for a mummy – laying on her back, with her legs extended and her hands folded over her groin, with no obvious sign of injury or trauma.

Unlike other mummies, the woman still had all of her internal organs, including the brain, heart, lungs and kidneys, which are normally removed during the embalming process. She was missing several teeth, which were apparently removed before her death because her mouth had time to heal.

“Teeth lost during life may have been extracted. Dentistry had originated in ancient Egypt, with Hesy Re the first recorded physician and dentist in the world,” said Saleem.

Access to a dentist and the fact that the woman was embalmed in juniper and frankincense -- costly materials that were imported -- suggest she came from a wealthy family. She was wearing two gold and silver rings when her coffin was found and had a lengthy wig made from palm fibers. 

Researchers were unable to determine a cause of death, but speculate that she died during extreme physical or emotional pain that made her scream. Rigor mortis may have quickly set in after her death, locking her facial muscles and ligaments in place.

“The mummy's screaming facial expression in this study could be read as a cadaveric spasm, implying that the woman died screaming from agony or pain,” said Saleem.

Cadaveric spasm is a rare form of muscular stiffening, typically associated with violent deaths under extreme physical conditions and intense emotion. Other academics might dispute that interpretation, because decomposition or embalming could also alter a body’s facial expression.

“The true history or circumstances of the death of the woman… are unknown; hence, the cause of her screaming facial appearance cannot be established with certainty,” researcher concluded.

FDA Warning About Kratom Death Challenged by Critics

By Pat Anson

The FDA is warning consumers not to ingest a liquid kratom extract after the death of one person and “many reports” by users of other serious adverse events, including withdrawal, addiction, anxiety and aggressive behavior.

The FDA’s July 26th alert about Black Liquid Kratom, which is made by Optimized Plant Mediated Solutions (OPMS), contained no details about the death or any of the adverse events. It was soon challenged by the American Kratom Association (AKA), which said the “mistaken and misguided safety alert” should be withdrawn until the FDA independently verified claims about the death.   

In recent years, kratom has become a popular supplement in the United States, where it is used by millions of people to self-treat their pain, anxiety, depression and substance use problems. Although legal in most states, kratom has never been approved for medical use by the FDA.

“Products containing kratom have been marketed as foods, including dietary supplements, or drugs with claims of therapeutic benefits. However, the FDA has not approved any prescription or over-the-counter drug products containing kratom or associated compounds, mitragynine and the more potent metabolite, 7-OH mitragynine,” the alert warned.

“The FDA recently received an adverse event report of a person who died after using OPMS Black Liquid Kratom. This is one of many reports of serious adverse events individuals have reported experiencing after consuming OPMS Black Liquid Kratom.”

The agency released no other information about where or when the death occurred. Only one death involving 7-OH mitragynine is recorded on the FDA’s Adverse Events Reporting System. That case was reported in 2023, but the death may have occurred earlier.

In 2021, a Georgia man died after consuming Black Liquid Kratom. An autopsy concluded that 23-year old Ethan Pope died from cardiac arrest due to mitragynine intoxication. Pope’s family has filed a wrongful death lawsuit against OPMS, the AKA and other kratom vendors.

Kratom is normally sold as a dry unadulterated powder, but Black Liquid Kratom is a highly concentrated 50:1 extract containing up to 375mg of mitragynine — an alkaloid that acts on the same receptors in the brain as opioids.

A kratom vendor that sells Black Liquid Kratom warns the extract is “too strong for use on a daily basis.”

If the 2021 Georgia death is the one FDA is referring to in its safety alert, it raises questions about why the agency waited so long to warn consumers about the extract or why it was never recalled. Black Liquid Kratom can still be purchased from a number of kratom vendors.

"The consistently unreliable and often false statements about kratom issued by the FDA over the past decade, which is a part of its relentless and misguided pursuit of banning kratom products that is not supported by reliable science, are wrong and Commissioner Califf should hold his agency fully accountable," Mac Haddow, Senior Fellow on Public Policy at the AKA, said in a statement.

"The various autopsy reports that have claimed that kratom is the sole cause of deaths have been thoroughly refuted as incomplete, poorly documented, hastily concluded, or demonstrably incorrect."

Alert ‘Coordinated’ by Trial Attorneys

In 2016, the FDA and DEA tried unsuccessfully to ban kratom products nationwide by listing it as a Schedule I controlled substance. An Assistant Secretary for Health in the Trump administration withdrew the FDA’s scheduling request in 2018, saying it was based on “embarrassingly poor evidence & data.”

The AKA characterized the FDA’s alert as another effort to demonize kratom that was being “coordinated” by trial attorneys seeking to cash-in on product liability lawsuits. A New York law firm even cites the alert on its website, telling kratom users that it was “ready to represent you in your injury case.”

“Plaintiff’s trial attorneys have been openly encouraging clients and other anti-kratom advocates to submit complaints to the FDA on alleged deaths over the past few months and have taken to social media platforms to solicit others to do so. The FDA ‘safety alert on kratom’ appears to be the result of a coordinated effort by those trial attorneys who have a financial interest in litigation against the very company the FDA’s safety alert identifies,” the AKA said.

A 2020 study funded by the National Institute on Drug Abuse concluded that kratom is an effective treatment for pain, helps reduce the use of opioids, and has a low risk of adverse effects. Hundreds of deaths have been linked to kratom use, but in the vast majority of cases other drugs and illicit substances were involved.  

A toxicology test on Ethan Pope found antihistamines and antidepressants in his system, but no illegal drugs or alcohol. The Georgia Bureau of Investigation classified his death as an accident.