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By Mary Carpenter

ONE DAY DC-resident P.W. began hearing music when none was playing —tunes that sounded a lot like the classical pieces recently featured on her public radio station. Pareidolia—also “Musical Ear Syndrome (MES)— is very common, although it can also be a sign of hearing loss or tinnitus or of mental health conditions such as schizophrenia.

The phenomenon of pareidolia—from the Greek words “para,” meaning in this case abnormal, and eidolon, spirit-image—results from the human tendency to seek patterns in randomness, writes Philip Jaekl on Nautilus.  Most likely to induce audio pareidolia are sounds from motors—air-conditioners, especially old ones; jet planes; traffic—and running water.

The more common form of pareidolia is visual, from finding animals in clouds to seeing faces—along with perceiving their emotions and personality traits, such as on the fronts of cars. Not unlike her subjects in Vienna, Austrian researcher Sonja Windhanger found those in Ethiopia described cars with a big windscreen, round headlights and a small grill as “young and feminine,” while cars with “flatter headlights and a bigger, squarer under-body appeared older and more masculine.”

Rorschach inkblot tests make use of this tendency of the brain to seek visual patterns, with the idea that an individual’s choice—for example, seeing a bunny or a vulture—represents their unconscious thoughts or feelings. Also, in a test for “implicit bias,” known as the “weapons or tools task,” participants view photos of faces, white and Black, with each one followed by an image that could be either a weapon or tool: after being shown a Black face, many people are more likely to label the subsequent image a weapon than they did when the previous photo was a white person.

With Rorschach audio, hidden messages emerge from random sounds. Major retail chains removed “Little Mommy Real Baby Cuddle ‘n Coo” dolls after a parent heard in the doll’s babbling sounds, “Islam is the light”—in 2008, an election year when media messaging frequently connected Islam and terrorism. And “electronic voice phenomena” refers to the effort to record voices of ghosts that have been heard in random electronic noises.

“Sine wave speech”—composed of sound waves with none of the frequency patterns thought to signal natural speech—used in studies at Yale University found most listeners, when told ahead of time specific words that would appear in the track, heard those words. On the other hand, several participants not told any words ahead of time still managed to pick out a sentence, suggesting that brains work quite hard to find patterns when none exist.

One explanation is “sensory activity spill-over”—from those parts of the auditory system that might recognize that the sound is coming from a motor into different areas of the nervous system responsible for processing speech and language, according to the study’s lead author, psychologist Robert Remez, now at Columbia University.

But another explanation is “top-down,” because pattern recognition involves not just finding a pattern but also assigning meaning—using prior knowledge, context and expectations from other parts of the brain to aid perception. With no actual verbal content in the sounds of an air conditioner, according to London neuroscientist Chris Frith, “our top-down unconscious expectations may be given free rein to color the sensory input.”

While pareidolias appear to be limited to vision and hearing, the sense of smell may play a role in both—at least for infants, as their “perceptual development integrates information across the senses for efficient for efficient category acquisition,” according to French researchers. In their study, infant brains found face patterns in random images more quickly in the presence of maternal odors.

Feelings of eeriness and sometimes revulsion can accompany pareidolia, notably with virtual reality and other robotic recreations as well as with lifelike dolls. “Uncanny valley” refers to the increasing strength of such feelings that can occur, paradoxically, as humanoid objects come closer to looking and sounding like real humans. But similar eerie sensations that can accompany finding meaningful connections or patterns where none exists can also be an early sign of schizophrenia.

“Anomalous auditory perceptions” is the focus of a discussion forum created by audiologist Neil Bauman at his Center for Hearing Loss in southern Pennsylvania—where participants often worry that hearing such sounds could indicate mental illness. Hallucinations refer to any sensory perception of something not really present, but perceiving voices with the knowledge that they are not real is very different from believing the voices are present —and becoming fearful or even taking steps to get out of harm’s way. Remez explains the difference between resemblance and identification—between thinking X is like Y, and believing X is Y. But, he told Jaekl, “I wish we knew more about that distinction.”

Just the experience of learning more about pareidolias and how common they are often reduces the frequency or intensity of these experiences. Although P.W.’s doctors ruled out any form of illness in her ears or elsewhere, when she found out that better understanding pareidolia might make her music fade or disappear altogether, she didn’t want to hear any more. Instead she started listening to recordings of Willie Nelson—with the hope that he might join what she calls her “mystery musicians.”

—Mary Carpenter regularly reports on topical subjects in health and medicine.

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By Mary Carpenter

PARIS-BASED lawyer L.M. credits greatly improved strength and body toning —more than she’d achieved from a daily swim of one mile, 45 minutes of hula-hooping or weight training—to twice-weekly 20-minute “EMS workouts.” Electrical muscle stimulation, delivered by what looks like a police vest plus wide bands on the arms, quads and glutes, is popular in Europe and coming slowly to the U.S.– with workouts purporting to offer the equivalent of 90 to 240 minutes of strength training in just 20 minutes.

EMS creates enough resistance to make the movements—low-impact combination of lunges, squats and planks with some weight-lifting movements; or even Pilates or yoga—feel more difficult and more quickly fatiguing. But EMS has helped “seniors with muscle atrophy” and those wishing to build back muscles after an injury as well as world athletes, according to WB20.io.

Compared to regular exercising, using electrical stimulation engages more large and small muscle fibers. The studio workouts—with a trainer who sets the electrical dose and directs the accompanying exercises—can cost from $50 to $100 a session. Research has found exercising with EMS leads to “a slight strength increase,” although the effects might be temporary and overdosing the electricity is a risk.

(EMS that accompanies workouts is different from passive electrical stimulation, called “E-stim,” used in physical therapy following injuries or surgery; and from TENS—transcutaneous electrical nerve stimulation—that works on nerves to help deal with chronic pain.)

“Life is nothing if not electrical,” writes Georgetown radiologist Timothy J. Jorgensen in his new book Spark, quoted in a New Yorker review by Jerome Groopman. Conditions like epilepsy and migraines may resemble “an electrical storm in the brain,” Groopman explains, describing the early 20^th century “medical craze for electrical treatments to address anything from headaches to bad thoughts.”

To date, body zapping is the only widely available method employing artificial stimulation of muscle and nerve tissue. But other exciting possibilities focus on neuromodulation—using electricity and magnets to alternatively stimulate and inhibit neuronal activity in the cortex. Researchers have linked neuronal damage and death in the brain to depression and neurodegenerative diseases, such as MS, Parkinson’s Disease and Alzheimer’s (AD).  Despite anecdotal evidence and good results in small groups of patients, however, most neuromodulation techniques still await documented proof of effectiveness.

Among stimulation methods, most use electrodes or magnetic coils that can penetrate bone and allow “painless stimulation of the brain”—compared to the more invasive DBS (deep brain electrical stimulation), which requires surgery to implant electrodes.

Positioning electrodes on the skin to create an electrical field has the advantage of being able to locate and excite tissues in a small target area. A device that can be used at home employs Transcranial Direct Current Stimulation (tDCS) to help treat depression, schizophrenia and epilepsy. One analysis of 12 studies on dementia patients found that tDCS improved working memory and language. And combining tDCS with cognitive training is the focus of a new study that includes participants with subjective cognitive decline—indiscernible by neuropsychological measures but suggestive of early AD, which can begin years before diagnosis of better-studied Mild Cognitive Impairment (MCI).

Another device for home use, Transcranial Electrical Magnetic Treatment (TEMT) employs magnets to create an electric field that can penetrate the entire forebrain and impact “intraneuronal” pathologic processes” —including breaking up aggregates of the  beta and tau proteins suspected of playing a role in AD. In one trial of eight patients, TEMT enhanced cognitive performance in seven of the participants.

Transcranial Magnetic Stimulation (TMS) is the most widely used and best-supported by research of the neuromodulation techniques involving artificial stimulation. Among more than 65,000 patients to date, TMS— using large magnetic coils to create an electric current in nearby neurons— has helped with severe, treatment-resistant depression in about 75%. Patients must remain immobile during the half hour or so of treatment—usually five days a week for four to six weeks.  (Popular, at-home “TMS” devices in fact use the less well-proven tDCS.)

A new version of TMS called Theta-Burst Stimulation (TBS) works more rapidly and has shown good results for patients with major depression considered at risk for suicide. In a Stanford University study of 20 people who had not responded to treatment with at least one antidepressant medication, 90% “went into remission,” and 60% maintained their improvement one month later—with some patients experiencing relief from “brain chatter” during the first day.

Finally, neurofeedback is a different approach to neuromodulation that uses electrodes placed on the scalp to detect, rather than stimulate, electrical activity in the brain. The patient plays a computer game, watches a video or listens to music—and these stop whenever the patient’s brain wave patterns veer away from a pre-determined optimal range.

For one patient diagnosed with MCI, who struggled with “brain fog” for about 10 years starting in puberty, brain scans showed reduced blood flow in parts of the brain that seemed “to align with my complaints of cognitive decline,” writes Peter Fox in the Washington Post. After about 100 sessions over two years, Fox learned to “control the brain waves —by staying focused on the music for instance.”

“Neurofeedback turned the lights back on,” said Fox. In one large review study, dementia patients scored better on different cognitive tests following neurofeedback, which is slowly gaining recognition for use with epilepsy, insomnia and ADHD. But Brown University neuroscientist Laurence Hirshberg cautioned, “no area of [its] application has been fully validated.”

While EMS workouts entice with the possibility of quicker and maybe better results, driving 45 minutes to a DC-area studio seemed too much for me—only to try exercises that seem arduous enough without adding resistance.  I might experiment if a studio opens nearby—but only after hearing many trustworthy reviews.

Mary Carpenter regularly reports on topical subjects in health and medicine. 

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By Mary Carpenter

A RECENT New York Times magazine article on “strange nocturnal visions” provoked by the pandemic has inspired an update of Mary Carpenter’s post on nightmares. Her post featured Rubin Naiman, psychologist and sleep and dream specialist at the University of Arizona Andrew Weil Center for Integrative Medicine, who is also quoted in the story, who said, “We are at least as dream-deprived as we are sleep deprived.”  

A pandemic study of 100 nurses in Wuhan, China, found that 45% were having nightmares —“many times higher than among the 5% of the population which suffers from “nightmare disorder.” That disorder is one of the parasomnias, or undesirable sleep experiences, which include talking while asleep, or somniloquy, which is the most common.

Nightmares are disorders that require medical attention only if they “routinely” disrupt sleep; or cause either daytime sleepiness or major distress—such as anxiety, that interferes with functioning—or fear of recurrence that impedes going to sleep at night.

Most nightmares can seem vivid, real and upsetting and are usually related to threats, safety or survival. But nightmares can also be rich fonts of learning about yourself as well as helpful for working through difficult issues —especially if you “dialogue” and “practice courage” with your demons in those dreams, according to Naiman.

Dreams are like the stars in the sky: always there but not always visible to us, Naiman says. While dreams occur throughout the night, we are most aware of them during REM sleep—which occurs every 90 minutes or so in ever-lengthening periods until waking. Because the longest REM periods occur in the final third of the night, he is opposed to using wake-up alarms, which can snip off the end of an important dream.

“Morning grogginess is an exquisite hybrid state of consciousness,” according to Naiman: part waking, part sleep, and part dream—and arising slowly to tap into that state can help us access our dreams. And, if we are more sensitive to the importance of our dreams, he believes we will have an easier time recalling them. Naiman recommends “bridging our dream experiences and the waking world” by journaling or jotting notes about the dreams, also by talking about them with a “receptive bed partner.”

“Dream loss is the basis of the modern epidemic of depression,” Naiman contends, and traces problems commonly blamed on sleep loss to dream loss instead. Rats die in experiments where they are prevented from dreaming. He points to anti-depressants and sleep medications along with addictions and over-exposure to light at night as wreaking havoc with our dreams by suppressing them.

When we suppress REM sleep with drugs or by sleeping too little, dreams move to earlier in the night and interfere with normal sleep patterns, according to Naiman. With PTSD, nightmares come earlier and during non-REM sleep. To help counter REM suppression, he recommends melatonin, because it “appears to support REM sleep and dreams.”

Nightmares give us an important opportunity to practice courage, Naiman says, that generalizes to our waking life. Image Rehearsal Therapy (IRT) is one approach to nightmares, based on the idea that we can change our dreams. If you dream of a dragon in the closet, ask yourself what you wish to say to it, or take up a weapon or turn it into a fruit tree. Rehearse this new script during the day, or write a description of the new dream and read it over.

“Lucidity” is another approach, in which the dreamer makes an effort during the dream to remember that they are in a dream —where everything is harmless—and to maintain an attitude of “intrepid curiosity” towards the dream content.  Studies on particularly adept lucid dreamers have found more activity in the part of the brain that enables self-reflection (the anterior prefrontal cortex) than in those less skilled.

“Conciliatory dialoging” with dark dream characters is a third approach, which can turn “demonic beings into puppies,” Naiman said. He recommends treating demons as equals and asking them: who are you, who am I and why are you here? By “conciliatory,” he means friendliness—not submission—to encourage dark dream characters to transform.

Finally, shadow work is the approach Naiman employs most often. “The shadow is everything we wish not to be,” he said. For example, a woman who dreamed about a shadow figure slicing her open with a knife was struggling with fears of opening her heart. Naiman advised: “Even when it’s painful, stay in dialogue with the bad sides of yourself.”

Setting “an intention to become receptive to our dreams” can be a good strategy before going to bed —by considering beforehand that there will be something worthy of our attention in our sleep, Naiman has written.  Instead of thinking about the next morning as we close our eyes, we can consciously descend into the sea of sleep with our ‘third eye open.’

Most people have trouble remembering their dreams either because they don’t sleep well, because they allow lifestyle factors (worrying about the next day, using alarms to wake up) to get in the way or because they don’t “offer [dreams] sufficient regard.”

Sleep time affects dreaming—which diminishes dramatically for those who sleep six hours instead of eight: “You lose almost half—and exactly the dreams that will be the most vivid, bizarre and memorable,” Harvard psychiatrist Deidre Barrett told the New York Times.

And sleep timing may have a dramatic effect on heart health, according to a new study at the University of Exeter in England. Of more than 88,000 people followed over five to seven years, the heart-healthiest went to sleep between 10 and 11pm—with a 12% greater risk of cardiovascular disease for those who went to sleep between 11 and 11:59, and around 25% higher risk both for those who fell asleep at midnight or later, and for those who went to sleep before 10pm.

People who find it hard to get to sleep before 11 may find inspiration in the anticipation of dreams—as opportunities to be courageous or creative, or at least of paying attention to see the stars of dreams when they appear.

Mary Carpenter regularly reports on topical subjects in health and medicine. 

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By Mary Carpenter

DC-BASED energy consultant A.W. had surgery to remove her gallbladder—after she’d spent 20 years with a diagnosis of irritable bowel syndrome (IBS), which failed to improve despite efforts by many doctors, including five lengthy integrative health work-ups, costing hundreds of thousands of dollars.

“Once IBS is on your chart, no one listens to anything else you say,” A.W. found. She had no pain, but was exhausted and slept all the time; and had only a few foods that she could eat without feeling sick. Then she heard a dinner party guest say he’d had gallbladder surgery for similar-sounding symptoms and had felt great for the first time in years; he recommended his surgeon.

Right away, according to A.W., the surgeon diagnosed gallbladder disease, based on the symptoms and the consistency and smell of her stools—caused by the failure of her digestive system to dissolve fat in her diet. An ultrasound confirmed the diagnosis, and the surgeon removed her gallbladder. Said A.W., “I felt great right away, my fingernails and hair started growing. I had begun to absorb nutrients. And I wasn’t tired any more!”

Because IBS is a “functional diagnosis”—that is, based on self-reporting of hard-to-measure symptoms like pain that have no obvious cause —physicians often pay insufficient attention or fail to look for alternative explanations. IBS is also a diagnosis of exclusion, of eliminating conditions with similar symptoms—including gluten or lactose intolerance; and inflammatory bowel disease (including Crohn’s disease and ulcerative colitis), and gallbladder disease.

Overlapping symptoms of chronic gallbladder disease and IBS can include nausea, diarrhea and pain. Gallbladder pain arises most often in the upper right section of the abdomen, where the gallbladder is located just below the liver and stores bile produced by the liver. Following meals, bile moves through ducts into the small intestine to help break down fat from food and aid the absorption of nutrients into the bloodstream.

Gallbladder pain, which can also come from just under the breastbone and can radiate to other areas of the chest and upper back, may be severe or mild, though many with gallbladder disease like A.W. have no pain at all. Among other gallbladder-related symptoms, a block or stone in the bile duct can cause yellow-tinted skin or jaundice, lighter-colored stools and dark urine; and an infection may cause chills or unexplained fever. Signs of chronic gallbladder disease can include acid reflux and gas; bloating after meals, particularly those with high-fat content; and chronic diarrhea.

Chronic diarrhea—defined as three or more bowel movements per day for three or more months—when not caused by a condition like Crohn’s or celiac disease, can be a symptom of either gallbladder disease or IBS. In “Habba syndrome,” a dysfunctional gallbladder produces abnormal amounts of bile causing chronic bouts of diarrhea after eating.

IBS, according to the standardized Rome classification system, must include abdominal pain recurring on average at least once a week during the previous three months; and at least two of the following: abdominal pain directly related to bowel movements, and that is associated with a change in stool frequency or in its appearance. To reflect the role of the brain as well as stress in IBS, the Rome system also refers to “changes in how the brain sends and receives” signals from the gut.

Various scans—ultrasound, CT and MRI — can help diagnose gallbladder disease, as can blood tests to check for elevated white blood cells that can indicate infection or inflammation of the pancreas. And functional scans, such as HIDA, employ injections of radioactive material to enable visualization of the gallbladder as it empties over 30 minutes following a meal.

Treatment for excess bile in the gastrointestinal tract can involve changing the constitution of bile acids to decrease the diarrhea, using drugs like Questran that bind to bile acids. And personal activity levels can contribute to the creation of gallstones: one study showed that women who sat for longer than 60 hours a week were more than twice as likely to have surgery to remove gallstones; and an observational study of more than 2,000 people found that a mere two hours of activity per week reduced risk of developing stones by 40%.

Surgery to remove the gallbladder, called cholecystectomy, can have no noticeable effect—although it can take time for the body to adjust to the altered digestion of fat. Temporary effects can include constipation as a result of the surgery; and diarrhea, because bile now flows directly into the intestines as it is produced by the liver. And excess fat or too little fiber in the diet can cause ongoing diarrhea or flatulence,

For a few months after A.W.’s surgery, “food ran right through me,” she said, but as her gut became healthier, nutrient absorption improved and difficulties disappeared. A.W.’s surgeon reported operating on five to ten people a month who had been misdiagnosed for years, some in their 80s, and who recovered to good health quickly afterwards. Many experts agree: when symptoms suggest IBS, gallbladder disease should be considered in many more cases.

Mary Carpenter regularly reports on topical subjects in health and medicine. 

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By Mary Carpenter

HONEYBEE VENOM—and the possible uses of apitoxin in bee sting therapy—has appeared in Covid news since early 2020 when a Chinese survey found more than 5,000 beekeepers who appeared immune to the infection. And while German researchers in Offenburg and the University of Jena found evidence to the contrary, they suggested bee venom could help treat Covid—if administered during the infection, “preferably at the start.”

The storied protection of beekeepers from a wide array of infections—as well as the use of bee venom in treating joint pain caused by both rheumatoid and osteoarthritis and autoimmune diseases, such as multiple sclerosis (MS)—has stimulated interest in bee venom therapy (BVT) for thousands of years. According to the theory, bee venom, or apitoxin, causes irritation and inflammation as part of an allergic reaction—revving-up the immune system, which makes it better at fighting infection. The venom also spurs an anti-inflammatory response, which in turn combats the inflammation responsible for symptoms and damage in many autoimmune diseases.

Apitherapy treats both those symptoms related to a diagnosis like MS as well as many that cannot be confirmed by conventional medical testing and thus are often dismissed by physicians. Most of these symptoms—most commonly pain, fatigue, and cognitive problems— rely on self-reporting by sufferers; therefore, so do the relief and other improvements for which sufferers credit alternative therapies.

The powerful placebo effect may play a significant role in these benefits, but conventional, rigorous scientific methods have failed to document measurable improvements. Extensive reviews of studies on MS patients concluded that bee venom was ineffective; and one study in the Netherlands on 24 MS patients found “no beneficial effects” evident on MRIs, and participants reported “no improvement in their disability, fatigue or quality of life.”

An episode of the Netflix series “(Un)Well” in 2016 renewed interest in bee venom therapy, portraying enthusiasts of its use both in anti-aging creams and in treatments using direct stings from bees. The episode follows a young woman who reports suffering for years from undiagnosed Lyme disease, as she receives treatment at California-based Heal Hive— where bees are held against her back using tweezers until each one stings and ejects its venom.

Chronic Lyme symptoms—cognitive impairment, fatigue, and vision and other complaints—may be due to the persistence in the body of Lyme bacteria, Borrelia, at levels undetectable by medical testing as well as inaccessible to antibiotic treatment. Laboratory studies at the University of New Haven showed “significant effects” of bee venom on the bacteria compared to those of antibiotics.

Among 40 patients with enduring Lyme symptoms who received BVT in a study published in the Journal of Clinical and Cellular Immunology, two recovered fully after 2.5 years; 8 recovered 85-90% after one year; and the rest showed lessening of symptoms. According to the study leader, “bee venom therapist” Amber Rose, in the control group of 20 patients who received antibiotic treatment, “Lyme symptoms worsened.”

Among active components in bee venom—enzymes, amino acids, hyaluronidase—the most active in fighting infection may be the peptide melittin, the most toxic compound in bee venom that can “induce wide anti-inflammatory effects,” according to an Overview article by researchers in France and Lebanon. In laboratory studies, melittin has protected mice exposed to “lethal doses of influenza A H1N1 virus.”

“Bee venom acupuncture” (BVA) involves injections of venom at acupuncture points relevant to specific symptoms or diseases—with the idea of adding healing effects of the venom to the mechanical benefits of acupuncture stimulation. And homeopathic preparations such as Apis mellifica employ the entire bee—ground-up and added to a solution that is then diluted to such a degree that “so many times …we are only eating the idea and the energy of the bee,” according to Healthy With Honey.

For Covid patients, bee venom ingredients can “modulate the body’s immune system and improve/facilitate healing,” according to researchers in Edinburgh and elsewhere, who contend that its “strong anti-inflammatory action…could support recovery… against Covid-19.”

The University of California at Davis, a center for honeybee therapy research, has hosted several “Covid-19 Symposiums,” during which entomologist Norman Gary called BVT “a new tool in the search for new ways to prevent infection with Covid-19.” Gary, “known internationally as “The Bee Man,” holds two Guinness World records: one for holding 109 bees inside his closed mouth for 10 seconds; and the other for creating the “bee suit,” a cluster of “more than 87 pounds of bees on a friend.”

But killing honeybees—whether using the whole bee or the venom—is a major concern with apitherapy, because these bees contribute to about 80% of the pollination of flowers, fruits and vegetables, and populations have declined dramatically in recent years. Whether venom is obtained directly from a stinging bee or extracted using an electric stimulus and then injected, the bee dies within 18 to 114 hours. (Venom from wasps, in the same order as bees, contains many of the same compounds, but not melittin.)

Apitherapy products that do not require killing the bees include royal jelly—a milky substance fed to bee larvae that could develop into the queen bee; pollen—collected in a narrow trap that removes pollen as bees return to the hive; propolis—a resin-like material, dubbed “bee glue,” collected by the bees from trees to use in creating and repairing hives; and beeswax—produced by bees’ bodies and combined with honey to create combs for hives.

When the German researchers surveyed beekeepers, they found 45 infected with Covid and two who had died but concluded that “since the antiviral effects of bee venom have been found in several studies, we cannot exclude that there could be a direct… alleviating effect when bee venom is administered during the infection.”

For an alternate explanation of the lower rates of beekeepers’ susceptibility to Covid and other infections, however, these researchers referred to a study on beekeeper personalities—which can combine two “archetypes:” “social” and, the more dominant, “predominantly investigative individuals, which means that they are quite inquisitive and curious people that often like to spend time alone with their thoughts.”

Mary Carpenter regularly reports on topical subjects in health and medicine. 

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Selma Blair in “Introducing, Selma Blair” / Strand Releasing/Discovery+

By Mary Carpenter

“INTRODUCING, Selma Blair” (streaming on Discovery Plus) shines a light on the challenges of living with an autoimmune disease —in this case multiple sclerosis (MS). For the actress whose MS was diagnosed in 2018, stumbling and slurred speech mark the flares—interspersed with remissions of well-being, including one that could last decades following a recent stem cell transplant.

Autoimmune diseases—in which antibodies produced by the body to counter infections and other foreign invaders turn against the body’s own cells and tissues—are on a dramatic upswing in the U.S. Prevalence has risen from about 11% of the population in 1995 to almost 16% in 2020—from about 22 million to 41 million individuals affected.  The ever-changing, most prevalent autoimmune disease list of more than 80 conditions includes type 1 diabetes, rheumatoid arthritis (RA), psoriasis/psoriatic arthritis, MS, lupus and inflammatory bowel disease (IBS, encompassing Crohn’s disease and ulcerative colitis.)

Women make up about 80% of autoimmune disease sufferers around the world: 80 to 95% of those with lupus and Sjogren’s syndrome; and about 60% with MS and most forms of arthritis (except osteoarthritis), writes medical geneticist Karen Orstavit at the University of Oslo. Estrogen levels affect the risk—with many autoimmune diseases in women starting shortly after puberty and often changing during pregnancy.

“Long Covid” shares many of the same “terrible debilitating symptoms” —heart palpitations, crippling fatigue, extreme brain fog, shortness of breath—reported by those with autoimmune diseases, according to a podcast conversation between Ross Douthat and Meghan O’Rourke, writers for The New York Times, The Atlantic and elsewhere. Long Covid symptoms have occurred in up to 30% of those infected by the virus—more often in younger patients, and in some who had mild cases of the disease.

In addition, the SARS-CoV-2 virus “triggers almost unheard of amounts of autoimmune responses in the body,” said O’Rourke—specifically, very high levels of antinuclear autoantibodies (ANA), which are considered the best physiological marker for autoimmune diseases.

ANA are the antibodies that mistakenly attack healthy cells and tissues. Higher levels often signal active autoimmune disease, but low ANA levels can be present with infections or other medical issues—and can also show up in blood samples long before symptoms of autoimmunity occur.

In ANA studies on patients beginning at Covid diagnosis, those who go on to develop long-haul Covid, as well as those who will be hospitalized with severe disease, had higher ANA numbers early on —providing hope that early ANA levels might help predict patient outcomes.

Many long Covid symptoms are similar to those of Chronic Fatigue Syndrome (CFS) – and many long Covid patients receive a diagnosis of ME/CF (myalgic encephalomyelitis/chronic fatigue). While CFS sufferers may have biomarkers of inflammation and a sustained immune response, CFS has lacked other indicators of autoimmunity, notably identification of the specific organ or organs involved.

Better understanding of both individual susceptibility and the role of environmental risks are increasing along with the prevalence of autoimmune diseases. Environmental triggers of autoimmunity include antigens—viruses and bacteria—but also pollutants and even specific foods that activate the immune system. Gluten is the trigger for Celiac disease; the Epstein-Barr virus for both MS and CFS; and cigarette smoke for rheumatoid arthritis.

“Environmental triggers” can act by turning on inherited genes that make some individuals more susceptible to developing autoimmunity—with several diseases such as RA more prevalent in people with various forms of the HLA-B gene. One form, HLA-B27, is present in more than 80% of patients with ankylosing spondylitis (a kind of arthritis) and to a lesser degree in those with IBS, reactive arthritis and one form of uveitis.

“America’s hidden chronic illness epidemic” is how the podcast conversation described high numbers of patients today reporting autoimmune-like symptoms, such as those of CFS—which generally arise slowly and often have no clear cause. But with Covid, Douthat said, “suddenly tens of thousands of people who weren’t sick before are sick with something new in the span of three to six months.”

The result: “the medical system as a whole [is] much more responsive to long Covid than it has been to other chronic illnesses,” said Douthat. But, maybe more important, “so many doctors either got sick with Covid or know someone who got sick with Covid.” As one doctor told Douthat, “these are my colleagues…And they were able to report on and be detectives about their symptoms in a way that might have been harder for a person who didn’t have medical training.”

Patients with autoimmune-like symptoms—including those without a formal diagnosis, notably for CFS-like symptoms—who have difficulty getting medical attention can find help in functional or integrative medicine, writes Austin-based functional medicine specialist Amy Myers on Huffington Post. Strategies include optimizing the diet to reduce inflammation and help repair the gut— by eating organic foods, filtering air and water and reducing use of plastic; healing infections like herpes; and relieving stress.

Even with an autoimmune diagnosis like MS, some patients do not respond well to mainstay treatments. For them, recent innovations in biologic medications made from living cells have offered new hope. Results with biologics can be as good or better than those from stem cell transplants such as Selma Blair’s, but without the side effects or risks: a new clinical trial aims to compare the two.

On the other hand, one patient who had a stem cell transplant in 2002 has not taken any “disease-modifying drugs” in the almost 20 years since. While the chemotherapy needed for the transplantation has side effects such as early menopause, gradual milestone achievements for this patient went from grocery shopping without fatigue to returning to work; and from using a wheelchair and walker to swimming, kayaking and downhill skiing.

—Mary Carpenter

—Mary Carpenter regularly reports on topical subjects in health and medicine.

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By Mary Carpenter

NEW REPORTS of what has been dubbed “Havana syndrome” are coming in from American embassies around the world—from “at least 200 CIA, State Department and Pentagon personnel stationed overseas,” according to the Harvard Gazette. But debate continues about the cause of complaints— odd clicking sounds inside the head followed by ringing in the ears, headaches, nausea, visual disturbances, sleep problems and memory loss. Two theories are taking center stage.

“The brain is being seen as the 21^st-century battle scape,” Georgetown neurologist and Pentagon advisor James Giordano told the BBC. According to the first theory, Russian agents have employed “weaponized microwaves” to surveil or disrupt diplomatic communication, or to stress or create fear that might disable embassy personnel. Giordano noted that research is underway around the world to explore “ways to both augment and damage brain function.”

The alternate theory points to a “functional neurological disorder” (FND) —similar to what Freud called “conversion disorder” — that can occur when fear, anxiety and other stressors are expressed as physical symptoms. The “psychogenic” component of the diagnosis, however, indicates a role for psychological factors that are making sufferers worry that their complaints are not being taken seriously.

Recently, a “growing trail of evidence has focused on microwaves as the most likely culprit,” according to the BBC’s account. Also, a 2020 report by the National Academies of Sciences concluded that directed, high-energy, pulsed microwaves were “most likely responsible for some of the cases.” In animal studies, brain tissue injuries at “nanoscale, subcellular levels” could explain symptoms in U.S. embassy personnel, as well as similar, persistent problems in those with traumatic brain injuries.

While health complaints from the Havana diplomats began in 2016 soon after the U.S. opened its embassy there, recent cases occurring in Serbia, India, Germany, Austria and Vietnam have made it possible to test sufferers quickly after symptoms appeared. “Some of the cases this year showed specific markers in the blood, indicating brain injury,” the BBC reported. “These markers fall away after a few days and [in earlier cases] too much time had elapsed to spot them.”

Traumatic brain injury is now the most common diagnosis, according to former CIA Senior Operations Officer Marc Polymeropoulos, speaking at the Harvard Kennedy School. During a trip to Moscow, Polymeropoulos woke up with his ears ringing and nausea, and has since received a diagnosis at Walter Reed of occipital neuralgia—chronic head pain that begins in the neck and spreads upwards. Earlier diplomatic cases received diagnoses of damage to vestibular organs in the inner ears.

Another believer in the microwave weapons theory, University of Illinois bioengineering expert James Lin has studied what is known as “microwave hearing.” When delivered in high-energy pulses—rather than the low-power continuous form used in microwave ovens—microwave energy can cause heat that is absorbed by soft brain tissue. The waves produce sounds inside the head—often compared to a chirping bird or a zipper—but no external noise.

In 2018, embassy personnel in Guangzhou, China, recorded high levels of radiation, according to Beatrice Golomb, who researches health effects of microwaves at UC San Diego. According to Golomb, independent studies have reported negative health effects from non-ionizing radiation, specifically that caused by pulsed microwaves. (Non-ionizing radiation from micro- and radio waves has always been thought too weak to cause cell damage—in contrast to the higher-frequency radiation used in diagnostic scans and intervention therapies.)

For a vulnerable subgroup of people, exposure to these lower-frequency waves can produce “negative, even life-threatening consequences,” says Golomb, making the comparison to those with peanut allergies.

In support of the alternate theory, a new book called The Sleeping Beauties, by Suzanne O’Sullivan, dismisses sonic weapons as well as clinical papers documenting brain injuries.  Instead, O’Sullivan asserts that all disease is “biopsychosocial”—but the social component is often ignored, and “Havana syndrome was a powerful sociopolitical issue.”

The title’s sleeping beauties refer to “resignation syndrome,” the name for an epidemic among refugee children in Sweden who fell into coma-like states—which automatically qualified a family for asylum—with no evidence of brain disease; and symptoms often disappeared when asylum was granted. In the U.S., “cheerleaders’ disease,” in several groups of high school girls, included Tourette’s-like tics and movements.

“Functional disorders appear to hijack the normal neurological mechanisms by which we experience our body,” writes Dan Hurley in the New York Times. Reporting that “dozens of leading neurologists, psychiatrists and psychologists agree that the diplomats’ symptoms are primarily psychogenic,” Hurley categorizes the confluence of neurological processes as damage to the brain’s software—with no evidence of effects on the hardware.

Symptoms of a functional disorder are inconsistent, varying even during the course of one examination, writes Hurley. In addition, while symptoms from physical injuries to the brain slowly subside over time, many of the diplomats’ symptoms remained steady or worsened over a period of months—long-term effects generally seen in psychogenic disorders.

Describing some forms of FND as disorders of perception, University of Edinburgh neurologist Jon Stone told Hurley that these are “giving us a window into how perceptions go wrong.” And a 2016 study on functional disorders co-authored by neurologist Mark Hallett, specialist in movement disorders at the National Institute of Neurological Disorders and Stroke, found “decreased functional connectivity from a region of the brain involved in self-agency—the perception of having control over your actions.” In another study of those with FND, Hallett found more gray matter in emotion-regulating parts of the brain and less in areas that control movement.

As reports of symptoms began coming in from around the world, the motive may have changed.  According to the BBC report, “The mystery of Havana syndrome could be its real power. The ambiguity and fear it spreads [make it] harder for spies and diplomats to operate overseas.”

Renewed interest from the Biden administration should lead to better coordination of symptom reports as well as to more rapid, thorough testing of sufferers—leading to hope that better evidence will clarify the issues. At the same time, though, shining a spotlight on this condition could add to any psychological effects related to stress and fear.

—Mary Carpenter

—Mary Carpenter regularly reports on topical subjects in health and medicine.

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By Mary Carpenter

ABOUT one-quarter of new medications approved in recent years are “biologics” — large, complex molecules made from living cells — of which a recent entry is Regeneron’s monoclonal antibody treatment for Covid. Also for Covid, last week Merck submitted an application to the FDA for its new antiviral, the “small-molecule” – i.e., traditional — drug molnupiravir.

The Regeneron drug (REGN-COV2) highlights issues surrounding most biologics that have emerged since the first one, “human insulin”—developed using recombinant DNA in the early 1980s: higher effectiveness along with much higher price tags. For insulin, the average list price increased 11% annually from 2001 to 2018, with average annual per person insulin costs now approaching $6,000.

Among other recently approved biologics, two (Praluent and Repatha) have dramatically lowered LDL cholesterol—and the corresponding risk of heart attack and stroke—in patients for whom statins proved insufficient. And Aduhelm (aducanumab) may help with the treatment of early-stage Alzheimer’s disease. Most biologics require administration by injection or infusion “because they are proteins that are quickly digested and inactivated if given by mouth,” according to Medicine Net.

Biologics provide “precision” or “personalized” therapy because they target a single step in the inflammatory process— a specific antibody, molecule or cell — and thus can avoid unwanted side effects of more broadly acting medications. On the other hand, some side effects of biologics include higher risk of common infections—upper respiratory, urinary tract and skin infections —as well as of non-melanoma (basal and squamous cell) skin cancers.

Most candidates for biologics are people with moderate to severe forms of certain, usually chronic diseases, who have been insufficiently responsive to standard or traditional drugs.   These diseases, such as, asthma; many autoimmune diseases such as rheumatoid arthritis, psoriasis, Crohn’s disease and ulcerative colitis, and multiple sclerosis; and cancer, can be difficult to treat because they present differently in each patient.

In “allergic asthma”— afflicting about 70% of asthma patients —inflammation occurs when inhaled allergens and pollutants interact with cells in the airway, leading to activation of several components of the immune system that can differ for each individual.

For the 5% of these asthma patients with uncontrolled, severe disease, the most commonly prescribed biologic is omalizumab, which targets the allergy antibodies known as IgE. Asthma specialist Michael Wechsler at National Jewish Health in Denver told the New York Times: “Everyone’s asthma is a little different, with different underlying mechanisms…It is now considered a syndrome with many different characteristics.”

All five biologics currently approved for treating asthma are cocktails of monoclonal antibodies —biologics distinguishable by the suffix “-mab” at the end of the generic names. The other two categories of biologics are non-MAB products and vaccines. The worldwide bestselling biologic —and one of the best-selling drugs regardless of category —is Humira (adalimumab), used to treat the inflammation that wreaks havoc in autoimmune diseases, including rheumatoid arthritis, Crohn’s disease, ulcerative colitis and several kinds of psoriasis. Humira cannot reduce the overproduction of TNF (tumor necrosis factor) that causes inflammation, but instead binds to and blocks the action of TNF in the cells.

Humira is also a leader in high price tags for biologics—costing more than $50,000/year, with some staying on the medication for years but others able to stop after several months.  Insurance covers anywhere from as low as 10% to 99% of these specialty drugs. A “biosimilar” —like generics for drugs, but for biologics —expected in the next few years could topple Humira from the top, as could a new biologic called Keytruda, used for treating many kinds of cancer.

Biologics account for only 2% of all prescriptions written in the U.S. but are responsible for 37% of drug spending. Although biosimilars have been approved for many biologics, their market penetration is poor in the U.S.—compared to Europe — because of messaging from drug companies and affiliated groups that it is “potentially dangerous to switch patients [to biosimilars],” writes Joel Lexchin, community medicine physician at the University of Toronto, on Jama Network.

For Covid, a good alternative to the Regeneron biologic is the new antiviral from Merck—because the drug, molupiravir, is taken by pill versus the hour-long infusion of Regeneron, which is cumbersome for physicians’ offices. Also, molnupiravir could cost the government about one-third as much as the biologic —about $700 vs. over $2,000. In trials, the antiviral was less effective than Regeneron but still reduced by half the risk of hospitalization or death from Covid.

The best description for molnupiravir is “high risk, high reward,” writes Derek Lowe in Science.  Like the other antiviral drugs on the market—used to treat HIV and Hepatitis C — the Merck formulation interrupts replication in the body’s cells that is critical for RNA viruses in order to reproduce and cause infection.

On the other hand, antivirals risk altering the body’s DNA, although Merck has said its drug is not capable of inducing genetic changes in human cells; and it can be cytotoxic, causing damage to cells in the liver, kidneys and other organs. Current authorization for molnupiravir would cover only “high-risk adults”—those over 60 or younger people with underlying conditions; and fully-vaccinated individuals may also be ineligible because they were not included in the clinical trial.

Like all current medications for treating Covid, molnupiravir has a limited timespan for administration–within the first five days after the onset of symptoms, which can be a problem because of difficulties getting tested for Covid. The Regeneron drug must be given within ten days of diagnosis; and the earlier antiviral drug remdesivir, requiring I.V. administration, is approved only for Covid patients already in the hospital.

Despite the drawbacks, mostly of high cost, biologics are making enormous contributions.   There is new vocabulary: first, the updated group name for medications — to include both drugs and biologics, both small and large molecules —is “new molecular entities” (NMEs); and, “antisense” refers to strategies of biologics, which block the communication between cells resulting in production of unwanted proteins.

But the greatest contribution of biologic medications may be hope for anyone confronting diseases, both chronic and deadly, that have no better alternative for treatment. While Covid and cancer are scary, other diseases in their severe and intractable forms have presaged a lifetime of misery—before the advent of biologics to offer new hope.

—Mary Carpenter

—Mary Carpenter regularly reports on topical subjects in health and medicine.

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By Mary Carpenter

PERPETUATING THE myth of the “addictive personality”—along with magnifying the stigma that accompanies it—is one of the more egregious wrongs committed by Purdue Pharma, makers of the heroin-like painkiller OxyContin. According to Empire of Pain by Patrick Radden Keefe, Purdue countered blame for OxyContin addiction and deaths that occurred even among those with legitimate prescriptions by denouncing everyone affected as having serious prior personality disorders.

As happens with other mental health disorders—among which addiction is officially classified —stigma creates significant barriers to treatment (albeit serving Purdue well because untreated users remained desperate for its product). According to the National Institute on Drug Abuse (NIDA), “stigma may stem from antiquated and inaccurate beliefs that addiction is a moral failing instead of what we know it to be—a chronic, treatable disease from which patients can recover.”

“Although addiction was originally framed by both Alcoholics Anonymous and psychiatry as a form of antisocial personality or ‘character’ disorder, research did not confirm this idea,” according to a book excerpt by Maia Szalavitz in Scientific American. Instead, longitudinal studies of addiction risk have pinpointed alterations in three major pathways in the brain that are responsible for self-regulation and are affected by the brain chemical dopamine, which is involved in reward and motivation.

The high likelihood of relapse for addiction is similar to that for other chronic diseases, notably those with both physiological and behavioral components. For hypertension and asthma, relapse occurs in 50 to 70% of cases. For addiction, the official number is 40 to 60% of cases— although counting the many relapses of each addicted person could bring that number closer to 99%. Explains Harvard psychologist Gary Sachs, “treatment of chronic diseases involves changing deeply imbedded behaviors,” and “no single treatment is right for everyone.”

Efforts to alleviate stigma recently prompted NIDA to update its vocabulary, for example, replacing “abuse” with “misuse.” And the latest description of “substance use disorder” (SUD) in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, fifth edition) eliminates not just “abuse” and “dependence” but also “addiction”— because the word “carries too much negative connotation and is ambiguous,” according to Addiction Center, a clearinghouse for patients seeking treatment resources.

(Ambiguity afflicts many words associated with addiction. “Dependence,” for example, can occur with many prescribed medications: the body naturally adapts and then experiences sometimes-unpleasant readjustments when the regimen ends. Even when dependence does indicate addiction, it can refer to mental or physical changes, or both. “Tolerance,” referring to the need to take ever-higher doses of a drug to get the same effect, is a clearer indicator of addiction, because it occurs rarely with medications taken as prescribed (OxyContin is a notable exception).

Also to reduce stigma, recent descriptions create a spectrum of addiction-related problems in place of the all-or-nothing diagnosis. In the DSM-5, SUD can range from “mild” to “severe,” based on the number of diagnostic criteria present—out of a list of 10 or 11 possibilities (different depending on the substance) that includes tolerance as well as “craving, or a strong desire or urge to use the substance” and “use..recurrent in situations in which it is physically hazardous.”

For NIDA, the spectrum starts with “misuse” and extends to “addiction”—defined by changes in behavior, specifically the “inability to control the impulse to use;” along with “changes in brain function.” The physiological changes further support the claim that addiction is “a brain disorder, not a personality issue,” according to Healthline.

Genetics may account for 40 to 60% of the risk of addiction, with a role in affecting the brain processes responsible for self-regulation. “Environment” is another risk factor: having someone with an addiction in the household both creates easier access to addictive substances and  models addictive behaviors. Other risks include experiencing abuse or other trauma as a child or adult; and ongoing mental health issues such as depression, anxiety and bipolar disorder.

Along with updated descriptions, NIDA has published a long list of “terms to avoid.” One is “addicted baby” —because “addiction” has a behavioral component, and because a baby’s symptoms are those of withdrawal, not addiction. Another is “habit,” which implies that a person can choose to stop as well as undermining the seriousness of the disease. Also on the to-avoid list are “alcoholic,” “drunk” “junkie” and “addict” —which should be replaced by “person-first language,” such as “people who are addicted to…”.  And terms like “abuse,” “dirty” and “clean” have problems with accuracy as well as stigma.

Responsibility for the terrible toll from OxyContin belongs not just to Purdue Pharma but also to the FDA, which continued to approve the drug for “broad use” despite a dearth of research.  The FDA also approved labeling that indicated the formulation reduced abuse liability and that addiction was rare, both allowing Purdue to market the drug as much safer than any opioid competitor.

When the original Oxycontin patent was about to run out in 2010, Purdue slightly altered its formulation, successfully obtaining a new patent but also making the pills more difficult to crush for injection. These changes coincided perfectly with the new, massive importation of cheap heroin from Mexico that contributed to an ongoing explosion in overdoses and deaths attributed to opioids.

Also ongoing is the difficulty for people who have no personal experiences with addiction— in themselves, or among friends or family—to stop perpetuating the stigma. Even with such personal experiences, I still struggle to remember that addiction begins with or becomes changes in the brain that control behavior — and to remember not to blame those who are addicted, but instead to support them by avoiding or arguing against the language of stigma.

—Mary Carpenter regularly reports on topical subjects in health and medicine.

By Mary Carpenter

MAINTAINING long-term relationships may be one of the biggest challenges for adults with Attention Deficit Hyperactivity Disorder (ADHD), according to Jessica McCabe, ADHD YouTube channel creator. In this population, more than 80% remain undiagnosed and untreated—more in the case of women than men; and among children, girls are less likely to receive the diagnosis. (Although the H in ADHD indicates hyperactivity, ADHD is the acronym often used to include everyone with attention deficit disorders, rather than the simpler ADD.)

On the other hand, adults make up one third of those prescribed ADHD-related medications.  And in recent years, more adults have discovered ADHD at the root of their depression or extreme anxiety—while, conversely, anxiety is often misdiagnosed as the hyperactivity related to ADHD.

For adults with ADHD, about 80% will have at least one other psychiatric disorder in their lifetime, which in many cases is a result of living with ADHD—about 30% have depression, and about 50% have an anxiety disorder, such as OCD. ADHD-related problems such as executive functioning deficits —inability to organize and plan ahead—can cause difficulties at school or work, which contribute to problems sleeping and further increase anxiety.

A self-taught sufferer of the condition, McCabe created the YouTube channel “How to ADHD” in 2016 (the average age of subscribers is now between 18 and 34) with videos on an array of issues challenging adults with ADHD. A popular topic is the challenges of long relationships, and of being tempted by the closest new “human of the desired gender because they’re there and you’re bored,” as McCabe puts it.

The paucity of ADHD studies on adults—fewer than half as many as those on children—means that ADHD issues for adults are poorly understood and in turn rarely lead to ADHD diagnoses. As West Chester, Pa. psychologist Ari Tuckman told the New York Times, “It’s adults who are often overlooked.”

On the other hand, adults may be less likely to either seek or benefit from a diagnosis, because they have greater freedom than children to choose activities better suited to their interests— and to find “situations that are a better fit for their novelty-seeking behavior,” according to Richard Friedman, psychiatrist and pharmacologist at Weill Cornell Medical College in New York.

For adults with ADHD, significantly fewer dopamine receptors in the brain make their reward circuits less sensitive compared with healthy controls. As a result, explains Friedman, they respond better to anything varied and unpredictable, and can find repetitive and routine tasks so unrewarding as to become “painfully boring.”

Having a relative with an ADHD diagnosis is an important variable for diagnosing the condition—so that many women recognize their own ADHD for the first time when they have a child who is diagnosed. In one study, among parents of 79 children with ADHD, 41% of mothers and 51% of fathers had the disorder. On the other hand, for an ADHD diagnosis, symptoms must have been present in some form since childhood—before age 12.

Lack of focus is “the most telltale symptom of ADHD,” according to Healthline, and it can include finding it hard to listen to others, overlooking details and not completing tasks or projects. With the opposite problem, hyper-focus, it’s possible to become so engrossed in a task as to lose all awareness of time, as well as of other people.

Adults with ADHD also have problems with forgetfulness, often mistaken for carelessness; and impulsivity—which can take the form of interrupting conversations, impulse-buying and binge-eating. “A disorder of performance” is how spokeswoman for the Attention Deficit Disorder Association, Kylie Barron, described her ADHD: “always unintentionally messing up, sticking your foot in your mouth and doing the wrong thing at the wrong time.”

Disorganization and time management skills can look like lack of motivation and procrastination. And fatigue can result from sleep difficulties as well as from the constant effort required for focusing. A list of questions from the Anxiety and Depression Association of America includes: “Do you have a hard time keeping your temper or staying in a good mood?”; and “Have you had these problems since you were a child?”

But criteria listed in the DSM (Diagnostic and Statistical Manual of Mental Disorders) are subjective—with the important distinction being frequency: which behaviors happen “often,” said Dr. Martin Teicher, psychiatrist and editor of the Harvard Medical School guide on adult ADHD. Screening questionnaires cannot provide a diagnosis but can be helpful for recognizing signs—which range from serious challenges to minor inconveniences.

Jessica McCabe describes less familiar, ongoing issues for adults, such as the need to set up workspaces, closets and even refrigerators to make it easier to see important items. McCabe suggests organizing refrigerator shelves to make nutritious foods more visible.

A few years ago, a realtor touring my house called what others have criticized as clutter a “very understandable need” to spread out the clothes in my closet and the work on my desk in a way that makes immediate needs more visible. In high school, I struggled to read some textbooks and other lengthy, assigned books—although I raced happily through Peyton Place—but had fewer problems when I could select my courses in college. And over the years I have found strategies to help with time management, but I’ve also learned that the much-maligned procrastination can provide time for reflection—albeit often aided by playing Words With Friends.

—Mary Carpenter regularly reports on topical subjects in health and medicine.

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By Mary Carpenter

“NEUROLOGICAL journals are littered with studies that contradict each other,” wrote L.A.Times reporter and Parkinson’s disease (PD) sufferer Joel Havemann in his 2002 book, A Life Shaken. Havemann is referring to the quest for underlying causes of the depletion of the neurotransmitter dopamine that causes PD symptoms. He ends the book on a hopeful note, writing that “Parkinson’s research is bursting”—but there has been little progress in the intervening 20 years.

What has changed is the numbers. Generally thought to be rare and to occur mostly in the elderly, PD is still most common among those over age 80, and more common among men than women —but is on the rise among all ages, including those under 65.

Most recently, following Covid infection, several younger adults (who had no previous clinical signs of PD and no family history) have developed PD symptoms—which supports earlier evidence for the role of viral infections and immune system activity in causing the disease, according to Patrik Brundin, director of the Center for Neurodegenerative Science in Grand Rapids, Michigan.

“Neurological disorders are now the leading source of disability globally, and the fastest growing…is Parkinson disease,’ write University of Rochester neurologist Ray Dorsey and others in the Journal of Parkinson’s Disease. From 1990 to 2015, the worldwide number of people with PD doubled to over six million, the authors write, “fueled by aging populations, increasing longevity, declining smoking rates, and the by-products of industrialization.”

Data from Blue Cross Blue Shield on the “commercially insured population” showed a 50% increase in the prevalence rate of PD among ages 30 to 64 in the five years from 2013 through 2017, according to its “Health of America” Report. The Report also noted higher rates in northeastern and midwestern states—with the highest in Vermont  (9.9 people/100,000), compared with the lowest in Missouri and Montana (5/1/100,000).

In the rising rate of PD, an estimated 12% is due to increasing longevity, 10% to decreased rates of smoking and about 10% due to environmental factors, according to the Dorsey paper. Prominent among environmental risks is the solvent trichlorethylene—with global use increasing by two percent each year in the semiconductor industry.

PD is the only neurological disease with an incidence that increases along with per capita GDP and along with decreased rates of smoking. Both cigarettes and caffeine have potential neuroprotective effects but their role in PD has not been proven; nor has that of other likely risk factors, such as previous head trauma and having close relatives with the disease.

Nailing down risk factors as well as early biomarkers for PD could help with earlier diagnosis of disease, which currently depends on observation of PD symptoms. But by the time of a PD diagnosis, there has been a 50 to 70% reduction of the brain’s production of dopamine, and a 30 to 50% loss of neurons in the brain that rely on dopamine—deficits that interfere with brain signaling involved in movement.

Movement-related symptoms of PD include tremor, slowed movement (bradykinesia), rigid muscles (dystonia), loss of automatic movements like swinging the arms while walking and changes in speech and writing–although in younger adults, PD symptoms more often begin with dystonia (stiffness or cramping in the muscles or limbs) or dyskinesia (involuntary body movements).

Previous reports of influenza patients experiencing Parkinson’s-like symptoms (tremors and walking disturbances) revealed a possible role in PD for viral infection and specifically of the inflammatory reaction of the body’s immune system.

And the increase in immune system cells in the brains of PD patients are similar to aggregates of those cells found in the brains of patients with autoimmune diseases, such as rheumatoid arthritis, according to German neuroscience researchers at Erlangen University. In lab experiments, “aggressive” T cells in skin samples from PD patients killed “a large number of nerve cells” —compared to cells from healthy test subjects.

In addition, a sleep disturbance that can arise before a PD diagnosis—along with other non-motor symptoms that include constipation, depression and loss of smell—provides early evidence of dopamine depletion accompanying increased inflammation in the brain. With Rapid Eye Movement Sleep Behavior Disorder (RBD), patients physically enact their dreams using vocalizations and movements.

Among patients with RBD —of whom approximately 90% will receive a diagnosis of a Parkinson’s-related disorder within 10 years—alterations in immune cells in the blood, called monocytes, may provide early signs of PD. Explains Marina Romero-Ramos at Denmark’s Aarhus University, the blood indicators suggest the possibility of early PD treatment using immunotherapy “that modulates cells in the blood, which subsequently would stop or delay the changes in the brain.”

In the cases of PD in younger Covid patients, three cases published to date, ages 35, 45 and 58, and a fourth unpublished, brain imaging revealed classic signs of Parkinson’s, and two of the patients responded to drugs given for PD. Among many possible explanations, these patients may have had undetected or pre-symptomatic PD, an ongoing neurodegenerative process that was accelerated by Covid, explains Brundin.

But the “known association between inflammation and an increased risk of Parkinson’s disease” suggests that the immune response to a Covid infection could potentially trigger Parkinson’s,” according to Brundin and colleagues. Another connection: some research suggests that the progression of Parkinson’s disease may begin in the olfactory system—often affected in Covid patients, who lose their sense of smell and taste—indicating that the Covid virus could access the same brain pathways associated with Parkinson’s disease.

“The Parkinson pandemic is preventable, not inevitable,” write Dorsey and colleagues, who encourage activism along the lines of other pandemics including polio, breast cancer and HIV.  Prevention should include reducing or eliminated chemicals known to increase the risk but also improving understanding of root causes including both environmental and genetic.

While experts have long suspected some role of the immune system in PD, researchers are still working to nail down causes and better treatments in much the same way they were by the time Joel Havemann died from PD a few years ago. But for the rest of his life, Havemann continued to talk, in the same way he concluded his 2002 book, about “what the disease has meant to me…a new respect for the human mind…a deep appreciation of family. Reverence for nature… Admiration for humanity.”

—Mary Carpenter regularly reports on topical subjects in health and medicine.

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By Mary Carpenter

“THERE IS nothing worse than finally seeing the light, only to be plunged again in darkness,” is a saying from the Balkans quoted in Jelena Kecmanovic’s Washington Post article on stress relief. For the stress arising anew from the Covid pandemic in autumn, 2021, Kecmanovic offers practical strategies, including several that involve ice.

And “Be Here Now” is back, along with other popular mantras for repeating throughout the day, to create calm by focusing on the present. Pandemic-related stress can come from feelings of dread and having little control — in the face of a threat that was at first new and unfamiliar and is now both worrisome and  confusing, according to Every Memory Deserves Respect, written by trauma survivor Michael Baldwin in conjunction with Cambridge, Mass. psychotherapist Deborah Korn.

But for people who have experienced serious trauma—especially the psychological trauma of early childhood—reading about patients dying can trigger unresolved grief. The authors write: “For individuals with significant trauma histories… the sense of vulnerability, uncertainty and terror [triggers] memories of previous adversity, loss” – and of powerlessness, isolation and loneliness from their childhoods.

Especially vulnerable are those who missed out on early close attachments to caretakers. “The attachment system can be thought of as the psychological version of the immune system,” the book quotes Harvard psychology professor Karlen Lyons-Ruth. “Without this foundation of security, people are more vulnerable to getting derailed by trauma…handicapped in their ability to self-regulate and recover.”

Explaining how early trauma lives in the body and is thus unreachable by “talk-therapy,” the book describes a therapeutic treatment called EMDR (Eye Movement Desensitization and Reprocessing) that can help reduce the vividness and emotion of traumatic memories. EMDR helped Michael Baldwin recover from debilitating phobias traced to a psychologically damaging childhood (which both authors believe was ignored in his six previous therapies because Baldwin’s privileged background “effectively kept his therapists from seeing the signs of his past abuse and neglect”). Another possibility—recently suggested for use in combination with EMDR, as well as with talk therapy and Cognitive Behavioral Therapy (CBT)— is virtual reality (VR) immersion therapy, similar to exposure therapy. Reproducing the original trauma with images seen in a VR visor —along with sounds and smells —while the wearer is in a safe environment can make traumatic memories more manageable. VR treatment has also been helpful for coping with phobias, and for reducing anxiety and other mental health issues.

Among accessible strategies for coping with stress, Acceptance and Commitment therapy (ACT) advocates “reconnecting with your values,” Robert Walser, psychology professor who teaches ACT at UCBerkeley, told the Wall Street Journal.

Walser suggests an exercise that begins with thinking of a happy memory, then figuring out what in that event meant most to you and naming it, and then acting: for example, if a memory of a day at the beach makes you think of “connection,” phone an old friend or family member.

“Acceptance is the opposite of getting stuck,” University of Michigan neuroscientist Ethan Kross told the WSJ.  Kross suggests “linguistic distancing”—talking to yourself as another person might, in the third person —because our brains access different resources and we make wiser judgments when we think of someone else’s circumstances rather than our own.

Slowing down— pausing when you finish a task to take three breaths or doing small tasks at half your normal speed can help calm the physiological stress response and make it easier to move forward. Repetition of the mantra “Be Here Now” comes up among those suggested by ACT to affirm the value you place on slowing down.

Among Kecmanovic’s suggestions, submerging your face in ice-cold water while holding your breath activates the diving reflex, “your inner dolphin,” which diminishes anxiety by redirecting blood away from the periphery of the body toward the heart and other vital organs and slowing the heart rate. Using ice can move attention into the present and away from ongoing fears to help allow for a reset, Kecmanovic writes.

An icy alternative involves holding ice packs against the eyes, upper cheeks and temples while leaning over and holding your breath. In either case, the recommended time is 15 to 30 seconds —with the caveat that those with low blood pressure or heart problems should get prior medical clearance.

Holding ice cubes in the hand is among sensory distractions suggested to provide a psychological break from stress—along with chewing a hot pepper and smelling a pungent cheese. Sucking on a lemon, even in the imagination, can make you salivate—which engages the parasympathetic nervous system and in turn leads to relaxation, according to New Market, Ontario psychotherapist Sheri Van Djik.

Another stress-reducing mantra involves reciting alphabetical lists — colors, flowers, car models, names of states. Value-affirming mantras, on the other hand, can offer mood boosts along with distraction—for example, listing three recent accomplishments, no matter how small, such as making a dental appointment.

One mantra that has helped me with stressful situations, such as some family visits, comes from a former therapist: “I love what I do—my life, my work my friends, my life.” But now I look forward to trying ice, which has helped me with difficulties such as sore joints and cold sores, in the hopes of channeling that inner dolphin.

—Mary Carpenter regularly reports on topical subjects in health and medicine.

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By Mary Carpenter

TO AVOID Chagas disease, I learned when living for a few months in Venezuela, don’t sleep in mud or thatched huts. In substandard housing — officially, homes of poverty—triatomine bugs, called “kissing bugs,” which are the vectors, emerge at night and infect humans with the T.cruzi parasites that cause Chagas.

Travelers in Latin America, especially in Brazil, should also avoid unpasteurized acai juice, or any sugar cane juice, because triatomine bugs can contaminate the fruit or cane during processing and storage. The bug earns its nickname because it often bites an exposed area of the skin or mucosa membrane (notably around the lips, also the eyes) and then defecates nearby, after which victims smear the bug’s feces into the bite.

In the U.S., kissing bugs are present in Delaware and Maryland, as well as in the southern United States —but not all triatome bugs are infected with T.cruzi. Even if a bug carries the infection, the likelihood of getting Chagas disease from a single triatomine bug in the U.S. is low, according to the CDC. Most of the 300,00 in the United States people living with Chagas disease had the infection before emigrating from Latin American countries, where chronic Chagas affects anywhere from six to eleven million people.

The Kissing Bug, a new book by Chilean author Daisy Hernandez, describes her childhood fear of the triatomine bug —along with “’the great epi divide,” medicine’s neglect of illnesses that mostly affect people in developing countries. Chagas is on the list of “diseases of poverty” — of which the “Big Three,” responsible for 10% of global mortality, are tuberculosis, HIV and malaria. Diagnoses of these diseases have decreased during the Covid pandemic, but public health experts fear that all are likely on the rise.

As the most prevalent communicable tropical disease in Latin America, Chagas disease appears on the WHO list of “neglected tropical diseases” and other lists of “neglected parasitic infections”—helping to bring attention and resources to stopping its spread. Case numbers for Chagas disease increase each year—in the Amazon region, causing disability in infected people and more than 10,000 deaths per year.

Chagas is rarely the result of a single encounter. Following a bite, the first visible sign can be swelling, called a chagoma, or rash; or purplish swelling or conjunctivitis in one eye. The acute infection, which can also cause mild fever, aches and other symptoms, responds to anti-parasitic drugs. Left untreated, active infection can progress to the chronic stage.

T.Cruzi parasites can live in the human body for years or decades, causing chronic Chagas, which in 30% of cases leads to severe heart and gastrointestinal disease. Ten percent of cases result in death, most often due to heart disease.

The parasites that cause Chagas disease (also known as American trypanosomiasis) belong to the same family of pathogens–trypanosomatids—as those responsible for African Sleeping Sickness (African Trypanosomiasis), transmitted by the tsetse fly; and Leishmaniasis, which causes skin sores and can affect internal organs, transmitted by sand flies, also primarily in Africa. Over time, so many people have become tolerant of these parasites that the majority of those contaminated are considered “healthy carriers.”

Of the Big Three diseases of poverty, tuberculosis is the leading cause of death from infectious diseases around the world—and when occurring in tandem with HIV, each can make the other infection more virulent. Like Chagas, TB has two forms: active and latent. Latent TB— in someone whose immune system keeps a reduced level of bacteria in the body and thus prevents active infection—is not contagious and causes no symptoms.

But of those individuals with latent TB, 5-10% will develop active TB disease at some point in their lifetime. In 2019, the U.S. reported fewer than 1,000 active TB disease cases, and 13 million cases of latent TB.

Also like Chagas, TB rarely occurs after a single or brief encounter. With TB, the bacteria spread through the air, and most often infect those with repeated exposure to someone with active disease, who is coughing or sneezing. Infection can occur either soon after exposure, before the immune system revs up to combat the bacteria, or at any point afterwards, even years later, during periods of weakened immunity. Anyone who has been exposed to active TB is a candidate for one of several TB treatments.

Protection against TB first requires awareness of infected people around you. To protect against Chagas disease in the U.S., the key is to identify the bugs, also known as the eastern bloodsucking conenose bug, a member of the family called assassin bugs.  Most adults range in size from ¾ to 1 ¾ inches in length, have an elongated cone-shaped head and have red-orange banding on their stomach.

With a suspected triatomine bug—as with the deer tick that carries Lyme disease—a lab or health provider must make the identification. For collection, avoid touching or squashing the bug by placing a container on top and sliding the bug inside; and then fill the container with rubbing alcohol or freeze the bug in the container until it can be identified.

But the advice I kept getting during my youthful months in 1970s Latin America, usually said with a wink at the innuendo: be careful where you spend the night away from home.

—Mary Carpenter regularly reports on topical subjects in health and medicine.