Take Your Shot (Or Not)

By Mia Maysack, PNN Columnist

Modern day pandemics aside, we’re fortunate to live in an age when there are continual advances in medicine. More forward momentum in the pursuit of migraine and headache treatment has occurred within the past two years than we’ve seen in decades. New injectable drugs help prevent migraine and others promise relief during migraine attacks.

Injections for migraine are not new to me. I received about 30 Botox shots every 90 days for longer than most people even had their headaches. Let's just say, it was for an extraordinarily long time.

A few years ago, I was awaiting another round of shots to the head and noticed my tummy was in knots for some reason. The nurse came in and told me they were trying a new brand of Botox, which basically means they found a cheaper version. This meant you sometimes get a batch of the medicine you've become accustomed to and sometimes it was a mystery combo, mixed with “similar” fillers containing the "same" active ingredient of botulinum toxin.

At the last session, I'd gone in for my regularly scheduled shots and got one of the worst migraines ever instantaneously. This was out of the normal for me and it led to almost a yearlong cluster that forced me to pause my med school pursuit and nursing career. I still have yet to bounce back from it.

They claimed I could have possibly received a “bad batch,” which I accepted due to how many times I've gotten this treatment with little to no adverse effects. Things cannot always be perfect, right? 

I wonder, however, still living with the repercussions to this day, if it was an adverse or allergic reaction to something.

Adding to my doubts is that I had been waiting on the doctor for over 45 minutes. Don't mind me! I don’t have anything else happening in my life, not like they even bothered asking. 

While waiting, I looked over at all the syringes full of who-knows-what and realized it just didn't align with me, my purpose or path anymore. 

I have nothing but good things to say about Botox, as it sincerely helped me for many years. It's one of the only things that ever has. But as we all must understand, no one knows the long-term repercussions of consistent use of any treatment option. 

Honoring the fact that we would all do just about anything to lessen our pain, I willingly took well over a thousand shots out of desperation for even a small fraction of relief. But what it often boils down to is trading one problem for another, even without being aware of it at the time.

Regarding a lot of the options out today, we are the guinea pigs and lab rats. There's no way of knowing how they could interfere with our well-being over time.

Earlier that same week, I was at a different appointment and they were inquiring about medications I take. By then, I had phased myself off nearly everything and Botox was the last traditional path I hung onto.

I told the nurse that, she replied and I quote: "That's probably for the best, I cannot tell you how many have come through with liver issues and kidney failure from their exposure to consistent prescription drug use." 

I’m proud to say my approach to healthcare is entirely holistic these days. Most providers are not extensively trained on how to treat pain, that's why they call it practicing medicine. They're only human as well and everyone is different -- thereby resulting in different outcomes for everybody -- hence the one-size-fits-all approach not working.

I share my Botox experience not to suggest anything or to instill fear, but to show that we don't always know what we are doing and it's no one else's responsibility to inform us. It is your body and your life. I urge you all to take control and remain curious, ask important questions, and don't eat everything that's fed to you. 

Unfortunately, we are living in a time where our best interest comes only after a check has been written. But by that point, as in my case, the damage may have already been done. I left that office and don't plan on ever going back.

Remember that every patient cured is a customer lost. Look out for and protect yourself!

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. 

Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

Why Coronavirus Is a Modern-Day Titanic

By Dr. Lynn Webster, PNN Columnist 

The Titanic carried 20 lifeboats. Only about half of the fabled ship's 2,207 passengers and crew members could fit in them. Anyone who didn’t get a seat on a lifeboat almost certainly would not survive the icy waters of the North Atlantic.  

Women and children were saved before the men, but there was social and economic stratification, too. The policy aboard the Titanic was to look after the first-class and standard-class passengers first.  

Even when the ship was sinking and all passengers were in equally imminent danger, the highest-ranking passengers were given priority during the lifesaving efforts. Third-class passengers, who were situated farthest away from the lifeboats, were left to find their own way to safety.  

The outcome was sadly inevitable. Of the first-class Titanic passengers, 61 percent survived. Of standard-class passengers, 42 percent lived. Only 24 percent of third-class passengers made their way to safety.

Your survival depended on who you were, and on the value others placed on your life. 

Some People Are Still Marginalized

Today, we are undergoing a very different disaster, but the same disparities are still in play. Our socioeconomic status, as defined by our education, income and occupation, is an important factor in the opportunities we are given. It also determines the quality of our lives and our ability to cope with setbacks.

The fate of the Titanic passengers is a metaphor for the trajectory of the coronavirus victims today. Socioeconomic status partially determines which cities and towns get hit the hardest, which populations face the greatest risk, and who endures the highest sickness and death rates from COVID-19.

Business Insider reports that "many wealthy families are having their private chefs and housekeepers procure and sanitize their groceries." The wealthy may not worry as much about coming into contact with the virus, because they can afford to hire people to take nearly all the risk for them.

The Wall Street Journal reports that nearly one-fifth of the population in some states have lost their jobs due to the pandemic. Lower-income workers are most affected.

Essential workers, including healthcare workers, first responders, law enforcement, grocery clerks, delivery workers and others, are seen as the heroes of the pandemic. They are keeping the gears of our society running so we can all survive.

However, just like the cooks, cleaning staff and maintenance personnel on the Titanic, the humblest workers today face the greatest risk of being left behind or most exposed to the danger.

Some of these heroes have inadequate health insurance, or none at all. Less than half of the bottom 25 percent of wage earners have sick leave, and only 24 percent of them have personal leave.

Everyone Deserves a Fighting Chance

There are racial and ethnic disparities related to the pandemic as well as socioeconomic injustices. That is partly due to the inequities of our healthcare system and living conditions.

According to the Washington Post, more than 5 million native Americans are especially vulnerable to the virus because they have high rates of diabetes, cancer, heart disease and asthma -- all of which put them at a greater risk from COVID-19.  

The New York Times reports that African Americans and Latinos suffer disproportionately from poverty, poor healthcare and chronic diseases like diabetes, hypertension and asthma. They have higher rates of becoming ill and dying from COVID-19 in New York City, Chicago, Boston, and other cities.  

These minority members are less likely to have primary care physicians and access to hospitals with life-saving equipment. They may have been inadequately informed about how they can protect themselves from infection, especially if English is not their primary language. They may live with multiple generations in crowded quarters, making it more difficult to maintain social distancing and self-quarantine protocols, and increasing the likelihood of spreading the virus to parents and grandparents.  

It may not be possible for everyone to be treated with equanimity, but the magnitude of the disparity we observe now will only exacerbate the inequality we see after the pandemic. The haves will continue to prosper, while the have-nots will find themselves in a deeper hole. As this occurs, the seeds for further social unrest are being sown.   

The pandemic is exposing many challenges for our society. But there is probably no greater need than to ensure that everyone has access to a lifeboat.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Long Term Risks of COVID-19

By Roger Chriss, PNN Columnist

The novel coronavirus SARS-CoV-2 is still mysterious. Although some people experience severe or even life-threatening illness, others only have a mild course and may even be asymptomatic. But emerging evidence is showing that recovery from Covid-19 may be more complicated and include long-term health consequences.

The CDC recently expanded its list of Covid-19 symptoms to include chills, repeated shaking with chills, muscle pain, headache, sore throat, and the loss of taste or smell. These symptoms generally start within five days of infection and may last for several weeks before resolution.

Long, Slow Recovery for Some

WebMD reports that for people with severe or critical cases “recovery can take up to six weeks.” Symptoms during that time can include severe fatigue and shortness of breath, making everyday activities like taking a walk or doing laundry a struggle.

Coronavirus patients who were hospitalized describe poor memory and extreme muscle weakness, often needing supplemental oxygen and physical assistance to perform basic daily tasks such as using a bathroom or getting dressed.

For people who require ICU care, recovery can take even longer. NPR reports that some COVID-19 survivors never recover completely and suffer from a condition known as post-intensive-care-unit syndrome, which can cause muscle wasting, organ damage, memory loss and post-traumatic stress syndrome.

"Unfortunately, oftentimes when they're coming off the ventilator, it's not the same person who went on the ventilator," one doctor explained.

All of this is exacerbated for people who are older and have preexisting health conditions. Recovery from any viral illness can be much harder for such people. One mathematical model predicts up to 94,000 Americans aged 65 and older who have hypertension, cardiovascular problems or lung disease could be hospitalized with Covid-19 from April to June, 2020.

Neurological and Cardiac Damage

As often happens with acute viral illness, there are long term consequences with Covid-19. Already there are reports of a link between the coronavirus and Guillain-Barré syndrome, a disorder involving rapid-onset muscle weakness caused by the immune system damaging the peripheral nervous system.

There are also concerns that Covid-19 may cause a wave of neurological illness. Gizmodo reports that on rare occasion, Covid-19 patients have developed brain swelling, strokes and seizures.

Researchers are scrambling to understand the effects of Covid-19 on the brain. Cases of the rare disorder necrotizing hemorrhagic encephalopathy have been reported, according to Wired. Some patients are experiencing loss of smell or taste, though why and for how long remains unclear. Anxiety, insomnia, and possibly even PTSD are being seen as well.

And there is emerging evidence that Covid-19 can also impact heart health. According to Kaiser Health News, a study found cardiac damage in as many as 1 in 5 patients, leading to heart failure and death even for those who have no respiratory problems.

It is clear at this point that Covid-19 is far more serious than a seasonal cold or flu. To date, the pandemic has led to over 55,000 deaths and nearly one million confirmed cases in the U.S.

Hospitals are trying to use artificial intelligence to predict patient outcomes, and researchers are struggling to better understand the full course of the illness. But there is a lot about the coronavirus that remains unknown.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

‘Sound Healing’ With Crystal Singing Bowls

By Madora Pennington, PNN Columnist

It’s 6 in the evening, on day 31 of "Safer at Home" quarantine in Los Angeles.

I am logging into a Zoom call for sound healing. The invite said:

“The great sleeping prophet Edgar Cayce noted "Sound will be the medicine of the future.” Well the future is now.

Share this link with anyone you know that is experiencing physical pain in the body. In about a half an hour that pain will be substantially reduced or eliminated. This works every time.”

The invite is from Jeff Klein, who uses "Crystal Singing Bowls" to make harmonic tones and vibrations. Jeff says his "sound therapy" helps people relax, rejuvenate and feel less pain. You can watch one of his singing bowl concerts below.

I am not in pain, but I am rather stressed out. And curious. Plus, I do love sound. Why not?

I get Zoomed in.

We have trouble getting started as our host, Jackie, isn’t close enough to the microphone and there is a strong background hum. No one can hear what she is saying, various attendees’ blast into their microphones.

Eventually Jackie figures it out and welcomes us. She’s the “surrogate,” the person Jeff will be working on, while about 30 of us watch and listen.

Jackie tells us to, “Sit into energy of gratitude and allow that into our system.”

I am not a spiritual person, but I do my best.

I have newspapers opened on the side of my screen I’d rather be reading. I am a news junkie. But Jackie convinces me to close my eyes and let go for now, and just be grateful.

This probably is a good idea.

“I am grateful,” Jackie says, with authority.

She encourages us to feel our breath, feel the warmth and experience openness.

Okay then, I can do this.

In comes Jeff, a portly man in his 60’s, who does live singing bowl concerts where he lives in Colorado, although not during coronavirus lockdown.

Jeff explains how his sound concert cured a woman’s hearing deficit, and how another man with neck pain had it permanently relieved from sound healing.

I am skeptical, but Jeff is ready to address this.

Jeff says placebos work because the heart and mind connect and healing occurs. Not a theory I had heard of.

“We are here to raise consciousness and vibration,” Jeff tells us. “Physical mental and emotional healing can happen, just like that,” as he snaps his fingers.

He instructs us to sit back, close our eyes, relax and be ready to receive.

Nothing I object to yet, except for his description of placebo effect.

And the sound quality. Zoom is not the best for a sound healing demonstration, with the chronic, scratchy, feedback audio. It’s so abrasive, I have to turn my volume down.

Jeff is fun to watch as he maneuvers the bowl like a master pastry chef. Swirling the rod around the rim to make sound, also swirling the bowl over Jackie’s body. I wish I were her right now. I’ll bet that feels good. At times, Jackie twitches on the table.

But I can multitask. Peeking out from behind my Zoom screen is the world map of coronavirus outbreaks from the New York Times. There’s a relaxation killer.

Jeff gets a bigger bowl, this one of stainless steel. I haven’t seen bowls like this before. Jeff has strong arms. Jackie twitches a lot with this one.

I stop watching. I let the sound play. It’s beautiful, layers of reverberations without a melody or structure. It makes it easy to let go.

I read about the failure of hydroxychloraquine on the side of my screen. Who didn’t see that coming? Then on to other headlines:

Italy’s poorer south suffers under lockdown, and fears a second blow from the virus.

The number facing acute hunger could double this year, the World Food Program says.

A port city in Ecuador has become an epicenter of the outbreak in Latin America.

Yet, I feel relief in my head and body from listening to these bowls, even over dreadful sound quality.

I must hunt down music like this on Sonos. I do a search for “Tibetan Singing Bowl.” Oh good, a playlist exists.

Then I remember: Don’t I own a Tibetan singing bowl myself? Got it in Santa Monica years ago. Oh yes, it’s in my living room. I should bang it daily. Since it has mercury in it (or is it lead?), I don’t like to touch it. It’s made of seven metals, some toxic.

I read all the news during the Zoom sound healing: The Los Angeles Times, New York Times and Washington Post. Yet, I feel relaxed. I was not in pain, but if I had been, I think I would feel better.

Managing pandemic anxiety has been a challenge. My technique has been to cognitively challenge distorted thoughts. I question what I am thinking and if it is valid, since it’s making me uneasy. At the end of quarantine, I think I will emerge a saner human. But this bowl stuff was really relaxing and requires way less effort.

When it ends, Jeff invites us to share. I want to tell him this was much better than I thought and I might attend again, but I’m not really a joiner.

Other participants chime in. They talk about the mystical (or are they hallucinatory?) experiences they had: tingling sensations, warmth, visions of light. They sound happy and relaxed, like I feel. I didn’t have those phenomena happen, but I wasn’t really trying.

I will definitely add this music to my day. I’m convinced this will help me get through the pandemic, and it has less calories than wine.

I have to think relaxing and letting go probably would help pain, at least temporarily. This is an easy way to do it.

More soothed than I have been in weeks, I’m hungry for the chicken and dumplings a friend made for us. I’ll steam some green beans, too.

Madora Pennington writes about Ehlers-Danlos Syndrome and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

Low Dose Naltrexone Saved Me from a Lifetime of Pain

By Madora Pennington, PNN Columnist

The first place I felt a ripping pain in my body was in my feet, when I was 14 and growing fast. But that’s only because I don’t remember the severe abdominal hernias I was born with. They probably felt the same. After I screamed for the first two months of life, a surgeon repaired them. I still have the scars.

In adolescence, very soon after my feet began to fail me, I was distracted by the snapping of my kneecaps. More trouble walking. Next came the low back aching. Carrying my schoolbooks and sitting in class became unbearable.

My merry-go-round of symptoms could have driven me mad, I suppose, but I was overtaken with such debilitating fatigue, I did not have the energy for big emotional reactions. My clique of junior high friends were agony, isolation and loneliness that I was too tired to accept or reject.

Then my abdomen herniated again. That pain was drowned out by everything else, to be repaired years later when surrounding tissue got caught in it, requiring an emergency operation.

In spite of exhaustive doctor visits throughout my life, no one gave a me a name for what was wrong with me until I was 33: Ehlers-Danlos Syndrome (EDS). Ah, so that’s what the other kids had that I lacked: stable collagen. My life began to make sense.

EDS was named for the doctors who first noted it in the medical literature. If it had been assigned a descriptive name, it would be called Contortionist Syndrome.

If I had joined the circus, my job would have been freaky back bender. My spine is impressively loose and a particular source of torture. I spent the last half of my 20’s begging for a guillotine to make the pain in my neck and head stop. No one obliged. Rib dislocations have been another problem. Is this what it feels like to get stabbed in prison? I am in prison in my body, so that would be consistent.

Before you feel too sorry for me, or recoil in horror that a human could be born so flimsy, note that my story has a happy ending. By the end of my 30’s, I got experimental treatment that made my body produce better collagen, strong enough to end my life of disability and begin a new one, functioning in the world.

Pain Changes the Brain

It was one thing to have a more stable body, but I still had a problem. Pain creates a disease state of its own. I had been in chronic pain for about 25 years.

Pain signals danger to the body: Do something because you are getting hurt! But what happens when the pain never stops or cannot be adequately relieved? The more a brain experiences pain, the better it gets at experiencing it. That is how brains are. They get good at what they practice.

Ongoing, unrelieved pain causes a downward spiral of maladaptive changes. Chronic pain triggers fatigue and depression. Sufferers tend to avoid activity, often quite legitimately, out of fear of injury or pain aggravation. Chronic pain also seems to induce troublesome changes in learning, memory, and body perception that are similar to emotional disorders. As pain changes the brain, sufferers are likely to feel less motivated and become less able to initiate or complete goals.

These brain changes are real. Researchers have noted widespread abnormalities in the brain, such as “grey matter density, in the connectivity of the white matter, as well as in glutamate, opioid and dopamine neurotransmission.”

How Naltrexone Works

One promising treatment for disrupting and rehabilitating the vicious cycle of chronic pain is an off-label use of an old drug: Naltrexone. Naltrexone treats opioid addiction by blocking the opioid receptors so drugs like heroin cannot take effect.

However, given at much smaller doses, naltrexone blocks the opioid receptors only slightly. This creates a stimulating, re-regulating effect The result: relief and even healing. Even better news, naltrexone is one of the safest drugs around.

How does low dose naltrexone (LDN) have such a profound effect? Opioid receptors are not just in the brain, they are spread throughout the body in the guts, blood, joints, skin and nerves. The hypothalamus and adrenal glands produce hormones with opioid-like effects, creating a complex hormonal feedback system that governs everything from immunity, pleasure and pain, to how connected we feel to others. Naltrexone in low doses gently interrupts these inter-body communications, which can cause a cascade of healing.

Dr. Linda Bluestein is a pain doctor at Wisconsin Integrative Pain Specialists and host of the Bendy Bodies podcast. She often prescribes low dose naltrexone for her chronic pain patients.

“LDN acts on microglial cells and is a novel CNS anti-inflammatory agent,” says Dr. Bluestein, adding that LDN works well not only on persistent pain (fibromyalgia, complex regional pain syndrome, migraine, irritable bowel syndrome, etc.), but also for autoimmune diseases, inflammatory conditions, neuropathic pain, chronic fatigue syndrome and myalgic encephalomyelitis.

“Results are very positive. Many patients get outstanding pain relief. The remainder get moderate pain relief,” said Bluestein. “Some don't really observe much pain relief but want to continue taking the medication because the incidence of infections is lowered. This is because naltrexone given in low doses (1.5 to 4.5 mg) can act as an immunomodulator benefiting both autoimmune diseases and immune function.”

As for side-effects, Dr. Bluestein notes that a patient must be off opioids to take LDN.

“The most common side-effect is vivid dreams. Occasionally a patient will have GI issues, abdominal pain, or even more rarely, loose stools. Cost is sometimes a barrier as insurance rarely covers LDN. Access is another occasional barrier as it must be obtained from a compounding pharmacy,” she explained.

Back to my story, my life of pain interrupted. I have been taking low dose naltrexone for years now. In spite of healthier connective tissue, pain had ravaged me. LDN went far to undo that. Results took time, but were well worth the wait. I would say LDN gave me my personality back, which chronic pain (and also long-term opioids) had altered.

As someone with Ehlers-Danlos, my body is overly-sensitive and overly-perceptive. Activity that is moderate, normal, and completely safe can cause alarm bells of injury and trauma to my brain, even though I am not actually injured.

Why this happens with EDS is not understood, but in my experience, LDN keeps this phenomena from becoming a downward spiral of more pain, depression, fatigue and dysfunction.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

The Pros and Cons of Telehealth

By Barby Ingle, PNN Columnist

The coronavirus lockdown has many providers now offering telehealth or telemedicine – ways to connect with a doctor without actually seeing them in person. Telemonitoring and concierge medicine are also becoming more popular.

The tele-words are often used interchangeably, but they have different meanings. How do you use them? What are the pros and cons?

Telehealth is the distribution of health-related services and information, usually over the phone or online. It allows long-distance patient and clinician contact, care, advice, reminders, education, intervention, monitoring and remote admissions.

Telemedicine is the practice of medicine using technology to deliver care at a distance. A physician in one location uses telecommunication to deliver care to a patient at a distant site.

Telemonitoring refers to the transmission of health data, such as heart rate, blood pressure, oxygen saturation, and weight directly to providers by phone, online or some other electronic means.

Concierge medicine is a relationship between a patient and a primary care physician in which the patient pays an annual fee or retainer. Be sure to check with your insurance to see if they cover concierge medicine or it can be pricey.

Ken (my husband and caretaker) and I have been using telehealth and concierge medicine for more than 5 years. We didn’t choose concierge medicine, but when our primary doctor decided to go that route, we looked into it heavily and made a decision to stay with him.

Our doctor joined MDVIP, a national network of primary care physicians who treat fewer patients and focus on personalized medicine. We can visit him in his office or by phone, text, email and video calls. He offers a wide range of preventive care that is covered in his fees.  And because he works in a network with other providers around the country, if we are traveling and have an emergency, we can see another doctor and it is covered.

Studies published in peer-reviewed medical journals show patients in concierge medical practices receive more preventive services and enjoy better control of chronic conditions than patients in traditional practices. Other studies show concierge patients are hospitalized and readmitted less often, and visit urgent care and emergency rooms less often.

I love having a true partner on my health team.  When you can’t leave home, you can still get that one-on-one service with a provider.  Transportation issues, taking time off from work, and finding child care are no longer an issue for routine visits and follow-up care. Yet, we still have the option for in-person visits when lab tests and other diagnostic tools are needed.

Providers who use telehealth can benefit from the streamlined reimbursements, improved patient satisfaction and retention, reduced no shows and cancellations, and boost the efficiency of their staff and themselves. Providers who use telehealth are also exposed to less virus and bacterial spreading — so its an important safety measure for them, as well as patients.

There can be a few drawbacks to telehealth. If you are not a “tech person,” your first few video calls can be an issue. A recent visit I had with a doctor by video was harder for him than me since I was only his second video appointment ever. For telehealth to work, the patient and provider need to have good internet connections, and some remote places in the U.S. still don’t have that.

If you are using telemedicine services that are not always with the same care team, you could also get a reduction in care quality. What might stand out to your longtime doctor or nurse may not be significant to a provider who doesn’t know your medical history. There is also a lack of personal touch.

Telemedicine is more for cases that don’t require a physical exam.  Telemonitoring is beneficial for chronic patients and the elderly. Concierge medicine is a great combination of telemonitoring, telemedicine and keeping the relationship strong between the patient and provider.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.  

CDC Seeking Comment from Pain ‘Stakeholders’

By Roger Chriss, PNN Columnist

The Centers for Disease Control and Prevention has made an unusual request for public comment about the use of opioids and the management of acute and chronic pain.

In a notice published last week in the Federal Register, the CDC said it wants to “obtain comment concerning perspectives on and experiences with pain and pain management, including but not limited to the benefits and harms of opioid use.”

Comments are being sought from patients with chronic or acute short-term pain, their family members, caretakers and healthcare providers – what the agency bureaucratically calls “stakeholders.”

“Public comment will help CDC's understanding of stakeholders' values and preferences regarding pain management and will complement CDC's ongoing work assessing the need for updating or expanding the CDC Guideline for Prescribing Opioids for Chronic Pain,” the agency said.

To leave a comment in the Federal Register, click here.

The CDC doesn’t always seek comments from the public. The agency’s 2016 opioid guideline was initially drawn up without any public hearings or input from patients. It was only after a public outcry that hearings were held and comments were sought in the Federal Register. Over 4,000 people responded, most of them opposing the guideline.

Since then, the federal government has continued to get an earful from patients, providers, medical organizations and various panels about how harmful the guideline has been for pain sufferers and why a “one-size-fits-all approach” to pain management doesn’t work.

For instance, in May 2019, the Pain Management Best Practices Inter-Agency Task Force issued a long-awaited report on pain management, emphasizing the “importance of individualized patient-centered care in the diagnosis and treatment of acute and chronic pain.”

In December 2019, the National Academies of Sciences, Engineering, and Medicine issued another report outlining “a framework for prescribers and others to develop their own plans for acute pain.”

At present, the National Institute of Health’s HEAL Initiative is developing web services for chronic pain management, along with working on research to predict pain.

Moreover, physicians like Dr. Stefan Kertesz have written about the need for nuance in pain management. And pain psychologist Dr. Beth Darnall has written about the need for patient-centeredness in chronic pain, while also working on clinical best practices at the Patient-Centered Outcomes Research Institute.  

Patients themselves have drawn attention to the problem, from TED talks by advocates like Kate Nicholson to nationwide rallies by the group Don’t Punish Pain.

Nearly one year ago, the CDC finally recognized that the opioid guideline was being widely misapplied and issued a long-overdue “clarification” urging policymakers to stop treating its voluntary recommendations as law.

The American Medical Association said it was about time.

“The guidelines have been treated as hard and fast rules, leaving physicians unable to offer the best care for their patients,” said AMA President Patrice Harris, MD. “The CDC’s clarification underscores that patients with acute or chronic pain can benefit from taking prescription opioid analgesics at doses that may be greater than the guidelines or thresholds put forward by federal agencies, state governments, health insurance companies, pharmacy chains, pharmacy benefit managers and other advisory or regulatory bodies.”

Patients and providers have been sharing their perspective and experiences for years, with little evidence to suggest that the CDC has been paying much attention. Not a word of the guideline has changed, although the agency is working on an “update” that may be done in late 2021.

As the number of pain stakeholders continues to rise and their care is complicated by COVID-19, the CDC needs to look seriously at the many years’ worth of clearly expressed “values and preferences.” If the CDC needs even more information, so be it. But it’s hard to figure out how much more clearly all the stakeholders can speak.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

Why Can’t We Find a Cure for COVID-19 More Quickly?

By Dr. Lynn Webster, PNN Columnist

Americans love to hate Big Pharma, its greed and self-interest is evident. Nearly doubling the price of insulin makes it unaffordable for many, and the 5,000% price increase for the infection-fighting drug Daraprim are just two examples of avarice that have fueled the loathing of the pharmaceutical industry.

However, if we are going to find a cure for COVID-19, it will come from Pharma. These days, we hear fewer complaints about greed and more inquiries about speed. Why can’t we find a cure for COVID-19 more quickly?

Understanding the process of drug development may not change anyone’s attitude towards Pharma, but it can help us understand why we’ll be waiting awhile for COVID-19 treatments and vaccines.

Phases of Drug Development

Drug development begins with trying to find a substance that has the potential to treat or prevent a disease. This is called the discovery process. Once a drug candidate is chosen, it must be studied in animals to determine its potential risk to humans. If the risks appear acceptable, human clinical trials can begin.

When a candidate therapy is ready for a Phase I human trial, it must be approved by the U.S. Food and Drug Administration. Initial doses given to volunteers are very low. Then they are gradually and methodically increased until side effects develop. This allows researchers to determine a reasonably safe potential therapeutic dose.

Phase I trials for COVID-19 drugs and vaccines are frequently discussed in the news as if these tests can determine their effectiveness. However, Phase I studies only evaluate safety. They don't reveal how well the drug will work.

If a drug appears to be reasonably safe on the basis of a Phase I study, it moves to Phase II. This is the first time a drug is given to see if it has a signal for efficacy. Unfortunately, most drugs fail to demonstrate safety in Phase I and in Phase II trials.

The few drugs that survive Phases I and II advance to Phase III. Most Phase III trials involve testing approximately 1,000 subjects, and usually take 1 to 2 years to complete.

How many drug candidates survive this long process? Only about 14 percent of drugs that enter Phase I clinical trials are ultimately approved by the FDA.

Fast-Tracking Drugs to Beat the Pandemic

If drugs successfully pass all three test phases, the results of the studies are submitted to the FDA for approval.

On February 29, the FDA established an accelerated process for potential COVID-19 therapies and vaccines. In addition, drugs can also be accepted for study via the FDA's "Fast Track" path.

The graphic below shows the average length of time it takes to conduct the normal phases of drug development (up to 15 years) compared to the Fast Track process (up to 5.5 years). The new accelerated path for COVID-19 therapies should be much shorter.

The graphic also shows how many research studies for COVID-19 treatments were in each stage of development as of April 11, 2020.  

The National Institutes of Health (through clinicaltrials.gov) reports there are 156 COVID-19 treatments in the pipeline, some of which could take up to 5.5 years to produce a viable treatment. That doesn’t sound very helpful for today’s crisis.

However, some already-approved drugs can be studied for new applications. This usually occurs in Phase IV studies. Hydroxychloroquine, remdesivir, and tocilizumab are three examples of drugs approved for other uses that are currently being studied as possible treatments for COVID-19. Results from studies using already approved drugs can be available within a few months.

But we need to know that, when these drugs are repurposed, they are safe for the new use. That is not always the case. For example, Brazil ended a recent chloroquine study because the drug seemed to be causing coronavirus patients to have irregular heartbeats.

Currently, there is no cure or vaccine proven to be effective against COVID-19. There simply hasn't been enough time to conduct the required research. However, there is a gallant worldwide effort to find effective treatments and vaccines.

Now is the time for Pharma to use its extraordinary expertise to provide the world with effective treatments for this pandemic. Although antipathy toward Pharma may remain, this is the time to cheer for their success. Our lives may depend on it. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

A Pained Life: A Tortured Wait

By Carol Levy, PNN Columnist

I just heard a woman on TV talk about her recovery from the coronavirus. “I am feeling absolutely horrid, but at least I know there is an end in sight,” she said.

This came on the heels of an episode of Law and Order I was watching. A woman who was tortured had bandages on all of her fingers.

“This man showed up in my apartment. I don’t know who he was. But he wanted information,” she said. “He burned my fingertips. I would have told him anything to make the pain stop.”

Many years ago, I saw an ophthalmologist. It was after the start of my trigeminal neuralgia. Any touch to the affected area of my face, even a strand of hair or a wisp of a breeze, triggered horrendous pain.

I reminded him, “Please warn me before you touch my face so I can prepare myself for the pain.”

He turned to another doctor and said, “This is how you do torture. You reduce their tolerance so all you have to do is touch them to cause pain.” Then he proceeded to touch my face and set off an explosion of pain.

Pain is horrendous. It is something we are biologically programmed to avoid. But there is no end in sight for those of us with chronic pain. Torture is a fact of life for us.

Tell someone you have pain from a sprained finger, a broken foot or a stiff neck, and rarely will you not get understanding and sympathy. Tell someone you have chronic pain and often the reply is, “Guess you have to learn to live with it.”

It is bad enough in normal times, but right now is anything but normal. Many of us with chronic pain have an added stress to the normal stress of living with pain.

My new brain implant is causing more pain than before the surgery. I cannot see my neurosurgeon. His office canceled two upcoming appointments.

I will probably not be able to see him until June or July at the earliest. The patients who can see him now are those who may have a brain tumor or another serious illness.

Once self-isolation ends, as a person in pain I will be close to the end of the line in terms of when I will be seen. I get it. It makes sense. But it adds to my feelings of aloneness. I have no doctor to help me and fear the pain will get worse. There's nothing I can do.

“Learning to live with it” is even harder when the normal resources are out of reach. The one thing we can count on is what the coronavirus patient said: “There is an end in sight.”

For us, that ending will be when we can see our doctors again and get our medications, therapies and treatments without being turned away.

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

Now It’s Our Turn

By Dr. Lynn Webster, PNN Columnist

These are hard times. When our emotions are intense and frayed, it’s often helpful to share those feelings.

Pain News Network, in collaboration with the International Pain Foundation and the Chronic Pain Association of Canada, is conducting a survey to see how the coronavirus pandemic is affecting people with chronic pain and chronic illness — who are most at risk from the virus.

They want to hear about your worries, concerns, and how you are trying to find meaning and purpose in a time of crisis. The survey is one way in which you can stay connected with others.

I encourage you to take the survey and share it with as many people as possible. Click here for the link.

The survey findings will be sent to those who request them. Hopefully, seeing the results will reassure you that you are not alone.

Other Pandemics

History shows us again and again that we are not alone. The world has always experienced widespread traumas — and now, it seems, it is our turn.

Fortunately, COVID-19 is not the Plague of Justinian, which killed half the people in the world, or the Black Death (bubonic plague), which killed at least one-third of Europe’s population. Projections for COVID-19 are nowhere near as deadly.  

Our forebears have been through other crises, although they were not of the magnitude of the two plagues. Many of them lived to tell their children and grandchildren about them, as we’ve experienced in our own families.

My paternal grandfather was my lifelong hero. He was strong and selfless, and he worked hard to take care of his family. He did everything necessary and more, without ever questioning why or complaining about the unfairness of life.

He and my grandmother lived through the 1918 Spanish Flu pandemic, which sickened and killed tens of millions of people during World War One. Doctors had no anti-viral medications or vaccines at the time.

Social distancing worked, fortunately, for the cities that practiced it. However, there were few other tools society could count on to cope with the pandemic. Beyond social distancing and masks, survival was a matter of luck more than anything else.

My parents endured the stock market crash of 1929 and the Great Depression. They also lived through World War II. Like all Americans, they experienced rationing of "luxury" items such as meat, sugar and gasoline. They hoped and trusted that their children, and their children's children, would never have to suffer the terror and deprivation they had faced.  

They hoped in vain. My siblings and I experienced the Vietnam War and the first Gulf Conflict in 1990. We saw the Twin Towers fall on September 11, 2001 and watched that lead to wars in Afghanistan and Iraq,

We lived through the AIDS epidemic. We saw a mass shooting at Columbine in 1999, and then we watched as Sandy Hook and other schools in the United States also became scenes of carnage. We witnessed thousands of people needlessly lose their lives.  We also experienced two major stock market declines, the first in 1987 and the second in 2008.

My wife and I assumed, perhaps as you did, that we would never face life challenges as great as those our parents and grandparents endured. We were wrong. Along with our children, grandchildren and the rest of the world, we now face a pandemic that has already caused over 100,000 deaths, closed businesses and created mass unemployment.  

What Lies Ahead

It may be too early to predict the eventual toll this will take on human lives. The resultant economic disaster could lead to another depression. Some estimate that the U.S. could see more than 30% unemployment -- far exceeding the joblessness of the Great Depression. For those who survive, it may take years for their personal finances and retirement savings to recover. 

This feels different from everything we have read about in history books. Tragedies are only stories until they happen to you. 

People with chronic illnesses, those who are under-insured or uninsured, and healthcare workers who are on the front lines risking their lives every day will likely be hit the hardest. However, this horror affects all of us. We find ourselves socially isolated, financially challenged, frightened for our loved ones, worried about the unknown, and perhaps dealing with serious illness.  

The lack of access to healthcare, medications and even the basic necessities of life will impact our physical and mental health. Even if we ourselves aren't suffering, people we care about certainly are. 

However, it is times like this that can bring us together to fight a common enemy. The acts of decency, bravery, creativity and generosity we see everyday should inspire us. If you follow #upworthy on Instagram, you can see hundreds of examples.  

Someday, our children’s children will read about COVID-19 in history books. Surveys are one way we can record our challenges, feelings and responses to these extraordinary days. Please take this survey and share the link widely. Thanks, and be well. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

I Was Lied to by My Pharmacist

By Colleen Sullivan, Guest Columnist

I wrote an article years ago titled "Humiliated by a Pharmacist" about how difficult it is to be a chronic pain patient and to get prescriptions filled for pain medicines.

I would love to report things are better now, but sadly the truth is they aren't.

I was diagnosed with Mixed Connective Tissue Disease (MCTD) in 2001. Having MCTD basically means a person has two or more overlapping autoimmune conditions. Mine are dermatomyositis, rheumatoid arthritis and psoriatic arthritis. These are all very painful conditions to have.  

Since I've been dealing with MCTD for so many years, I've dealt with a lot of different pharmacists and learned a few things.

Whenever I enter a pharmacy for the first time, I like to speak with the manager, explain my conditions and what I need from them. Then, I ask what they need from me and if they are willing to work with me. I just want to make sure we understand each other and are on the same page. 

Picking up my prescriptions went smoothly for awhile. It was still stressful and scary to approach the dreaded pharmacy counter and hand over my prescription for an opioid. They still looked at the Rx and up at me with judgmental eyes. They still had an attitude and no empathy whatsoever.  

COLLEEN SULLIVAN

But I managed to find a place and a head pharmacist who was willing to work with me. It was a small pharmacy that wasn't part of a big chain and I thought they weren't going to be the "med police" like Walgreens. You know what I mean: Pharmacists who think they know more than your specialist and that it's somehow their job to judge if you're worthy of your medicine or not. 

This pharmacy is located in the same building as my pain specialist, which I thought was great.  First, if they have any questions or problems, my doctor is right upstairs. Second, it's super convenient being one floor below. I already have to drive 4 hours round trip to see my doctor in Homestead, Florida because there are no doctors in the Florida Keys willing to treat any pain patients. 

So, I went to this place and spoke to the owner and head pharmacist, Claude, who said it'd be no problem at all and he'd be happy to work with me. He assured me they have a special relationship with a drug distributor and a backup vendor as well. I was finally able to relax and not have a flare up every month from the stress of going to a pharmacy.  

Things were good for six months or so, but then suddenly the whole staff started acting weird towards me. Here we go again, I thought. They started insisting I call them days in advance every month to remind them I'm a customer of theirs and to order my medication. I didn't mind doing that, but the more I thought about it, isn't that their job?

They'd assure me on the phone that everything was good, they ordered it, and it'd be there for me when I needed it.  

Then one day I made the two hour drive there and handed over my prescriptions. They went to the back and whispered to one another. That made me extremely anxious. Then, they came up and said, "Sorry, we don't have it." 

I stood there frozen in disbelief before asking, "Don't you remember talking on the phone with me and assuring me you had it?"  

Claude just shrugged his shoulders and said, "I can't help you. Sorry. I can order it now." 

Order it now? That means I would have to make the 4-hour round trip drive the next day just to pickup a prescription.  

This happened from then on, almost every month. When they didn’t have my meds, sometimes Claude would nonchalantly say, "Just drive around and look for it."  

JUST DRIVE AROUND AND LOOK FOR IT?

If you walk into a new pharmacy with an opioid prescription, it never goes well.  They look at it, look back at you and say, “We don’t have it.” They don't look in the back. They don't check the computer. They just say no. 

One thing you should know about me is I really hate confrontation. Stress makes my conditions worse, so I try to avoid it at all costs. I never argue with them. I meekly walk away and, out of desperation, cry in my car. 

I kept trying to get my prescriptions filled at this small pharmacy, because each time they'd apologize profusely and say it was an oversight and won't happen again.  

One of the last times I went there, I called in advance again. Claude says, "No problem. I ordered it and it's here. I'm looking at it. No worries."  

I get there and he says "Nope, we don't have it. It’s a problem with the distributor. Wait a couple of days and they'll get it." The whole time he's talking, I'm thinking, “You lied to me. Why did you lie?” 

So I wait. Three days later, I call and Claude says he can't get it. I end up having to go to Walgreens -- and that's a whole other story -- but eventually Walgreens gets it for me that month with stipulations.   

But now I'm three days behind in my medication. I have to get infusions every month on a particular day and Claude is well aware of that. Being three days off means two 4-hour round trip drives a month instead of one.

The next month. I called a week ahead because Claude had assured me he would work it out. But on the call he says, "Sorry, it's still a problem with the distributor."  

Out of curiosity, I asked who was the distributor. He tells me it's Cardinal Health.  

I decided to call Cardinal myself and within 20 minutes I find out there is no issue on their end and they can ship it to that pharmacy within a day. I think, this is great! Problem solved and I don't have to keep bothering Claude.

I called the pharmacy to tell Claude the good news and he was furious that I called Cardinal. He's literally yelling at me over the phone saying, "How dare you!" and "Who do you think you are?"  

I thought I wasn't just helping myself, but the pharmacy as well with the distribution problem they kept telling me about. Claude then refuses to receive the shipment from Cardinal and says they no longer want my business because it's "too much work.” He says he's done with me and tells me not to come into his pharmacy again. 

After hanging up and crying for 20 minutes, I start to realize there never was a distribution problem. It was all just a lie and he’s angry at me because I figured it out. Keep in mind this is two days before I'm supposed to refill. Because of his lies, I now had 2 days to restart the process of finding a whole new pharmacy. 

Honesty, it's sad that chronically sick people are being treated like this by medical professionals. All Claude really had to do was be honest and say, "I'm not comfortable working with you anymore. I will fill them for you one more time, so you'll have a month to figure something else out."  

If he could've just been professional and told the truth, there would have been no problem.  

Colleen Sullivan lives in Florida.  

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org. 

Finding Resiliency in a Pandemic

By Mia Maysack, PNN Columnist

This pandemic has broken my heart for multiple reasons, aside from the obvious ones. Knowing so many are displaced, unemployed, and losing things they've worked their lives for.

Being aware of the impact, watching the number of those infected or lost rise, as well as repeatedly witnessing countless people flat out ignoring the simple rule of staying home, has exposed multiple layers of the broken foundation that our country is built on.

If we don't address these issues, it's my belief that this crisis is only just the beginning.  

Many believe that “healthcare is a basic human right." Though I couldn't agree more with the ideology, why is it this statement carries more weight when proclaimed by healthy people, yet chronic pain patients beg regularly to be seen, heard, treated or even believed?

The changes in the healthcare system in response to the coronavirus have been astounding. Suddenly telehealth is in vogue and physicians are returning phone calls. The AMA wants the rules waived on opioids and other controlled substances. And complimentary healthcare resources and advice are being released on endless platforms. Does it really take a pandemic in order to do right and join forces?

So be it.  Instead of remaining perturbed, I've chosen to rejoice over the fact these things are possible. And I definitely plan on remembering this when the immediate threat blows over. Understanding, flexibility and convenience should remain part of our healthcare system when we re-navigate our new normal.    

Those who are healthy have been complaining about boredom, not being able to do what they want, feeling isolated and overwhelmed by changes they've been forced to make.

Welcome to everyday life for people living with chronic pain and illness!

Many who've tested positive for COVID-19 have recovered, which is something I’m grateful for -- though personally, I am unable to relate to.

There's deeply rooted disappointment in our government. The fact it took so long to create an action plan, on top of the fact the main hang-up revolved around saving the economy, not people. I suppose that isn't anything new, but it gifted us with the exposure of national shortcomings and has been a wakeup call.

There’s a saying used in politics that originated from Winston Churchill: “Never let a good crisis go to waste.”

There’s not much that is ‘good’ about this, other than the fact it is demanding we grow as individuals and come together, cultivating a greater comprehension and sense of awareness. If handled properly, many lessons can be learned from the crisis and we can implement changes in everyday life as we know it.

As people living with chronic illness or pain, we have proven that resiliency is a very real part of who we are. Remembering that can assist in calming our nerves and help us focus on what matters most.  

Toilet paper alone won't save us.  

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

Are You Back on the Pain Chain?

By Ann Marie Gaudon, PNN Columnist

Societal messages constantly tell us that we need to control any and all pain before we can be happy.

What happens when this is not possible? I’ve said it before: In order for me to be pain-free, I would have to be rendered unconscious.

Control of “clean pain” -- biological pain that can’t be fixed --  is very attractive, but in a never-ending quest to control it, we end up with the pain controlling us. That’s when “dirty pain” begins -- we focus too much attention on the negative thoughts and feelings associated with pain.

One form of dirty pain is called “Mental Scripts.” These include what our mind tells us about our pain experience. Here are some examples: 

• Searching for reasons you’re in pain: You might say to yourself, “I told you not to lift that. You know what happens when you aren’t careful!” 

• Yelling epithets to yourself in your head: Your mind might be shouting, “You hopeless idiot! You’re such a failure at life!”   

• Reciting rules you’ve established for yourself around your pain: You might tell yourself, “Exercise is not an option while I’m in pain,” or “I cannot live a good life with pain.” 

A second type of dirty pain is called, “Avoidance Behaviours.” This means anything you do or avoid doing in order to try not to feel pain. This behaviour can be particularly perilous because the act of avoiding an experience due to some feared outcome does not always reduce pain, it can actually increase pain. Here are some examples: 

• Using medications in an attempt to avoid pain altogether rather than to dampen your pain enough to live your life.  

• Refusing to exercise altogether because you are in pain. 

• Refusing to work or volunteer in any capacity because you are in pain. 

A third type of dirty pain we subconsciously engage in is called “Values Discrepancy.” This means choosing avoidance and moving far away from the life that you want to live.  

When you are knee-deep in Values Discrepancy you are living the antithesis of a life that you value. For example: 

• Giving up on a higher education because you fear the pain will not allow you to concentrate. 

• Quitting your dream job because of the pain you felt when you were there. 

• Choosing not to have a family because parenting could be difficult if you are in pain.

Avoidance behaviours (a form of trying to control) are indeed very seductive. They look like the answer. Have you ever seen an advertisement for any type of pain control? The patient takes the magic pill or treatment, the pain is completely resolved, and the patient is seen happily playing tennis or rolling around in the grass with their child.

Western culture rarely if ever shows us reality. The control paradigm is such that the more choices we make attempting to control the pain, the smaller and less meaningful our lives end up. We become stuck on the “Pain Chain.” For chronic pain patients, the manifestation of dirty pain typically looks like this:

The more we struggle against what is uncontrollable, the more we will suffer. The good news is that no one is fated to suffer from dirty pain for the rest of their lives. If you find yourself suffering from any of these symptoms, find yourself a qualified therapist in chronic pain management.

When chronic pain is part of our lives, we need more resilience, not less. We grow resilience by practicing and learning not be ordered around by our thoughts and feelings. Psychotherapy can help you with workable solutions to rise above life-draining, self-defeating patterns of behaviour.  

I once was choked off in the Pain Chain, and now I help others to unleash themselves. With the right tools, it is possible to get back to living a life in the service of our values – not in the service of our pain.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

How Fear Can Make the Coronavirus Worse

By Dr. Lynn Webster, PNN Columnist

At 7:09 am on Wednesday, March 18, 2020, a 5.7 magnitude earthquake struck Salt Lake City, Utah — the city in which I live. Though it caused little damage, the earthquake created immense fear. 

This occurred during a week in which the Dow Jones Industrial Average plunged, setting a record for the largest stock market drop in U.S. history. Although only about half of U.S. citizens own stocks, the impact of the enormous amount of wealth lost will have a ripple effect on every American. 

In addition, like the rest of world, we face the coronavirus pandemic. Because Salt Lakers have experienced a trifecta of calamities, our fear is palpable.

But intense fear is not limited to Salt Lake City. It is ubiquitous. People all around the world are experiencing nearly unprecedented levels of fear in the face of the pandemic. As a friend of mine said, it feels like an apocalypse of biblical proportions.

Fear is a primordial emotion that can protect humans from danger, but it can also be destructive.

Typically, fear is proportional to three factors: the magnitude of the threat; how well we can predict and control the potential harm; and whether we can see that the threat's end is in sight. Since we know so little about the novel coronavirus, all three factors contribute to our fear.

A 2016 paper published in the journal Disaster Health described Fear-Related Behaviors (FRBs) that occur during mass threats to a society. The study found that FRBs have four possible outcomes: they can increase harm, have no effect on harm, decrease harm, or prevent harm. Since we are all terrified, it may be helpful to know the consequences our fear may have.

What We Can Learn from the Ebola Outbreak

The 2013-2016 West Africa Ebola Virus Disease (EVD) outbreak may be the best and most recent example of how to predict the effects of FRBs on COVID-19. 

More than 28,600 people became ill from Ebola in Guinea, Liberia, and Sierra Leone. Given the virus’ high mortality rate of nearly 40 percent, it caused approximately 11,300 deaths.  

Examining the behaviors and outcomes of EVD may portend the outcome of the COVID-19 pandemic if the FRBs we exhibit with the novel coronavirus are proportionately similar to those caused by Ebola outbreak.

There were five overarching consequences of FRBs during the EVD crisis:  

1. Fear accelerated the transmission of Ebola. Those who lived in infected areas tried to escape by traveling to places they perceived as less infected. In effect, they tried to outrun the infection, but that proved impossible. They carried the disease with them, infecting Ebola-free communities and increasing the number of deaths. Ignoring the risk would have the same effect in the United States. 

2. Fear — in combination with lack of resources — discouraged some of those who were infected from seeking care for their disease. They may have died from EVD unnecessarily. Those who are underinsured or lack insurance in the United States may also decline to seek care. 

3. The fear of being exposed to EVD prevented some people with other life-threatening diseases from getting the health care they needed. That may happen now, too. People who have heart disease, diabetes, immuno-suppressed cancer, or chronic pain may not seek medical treatment because they fear being exposed to the coronavirus through contact with healthcare providers or other patients. 

4. Fear of EVD increased the number of people with mental health disorders. Fear-induced stress may have caused trauma and exacerbated existing mental health problems. Also, survivors involved in providing care to the ill were often blamed for spreading the disease. Some may have suffered from survivor's guilt. Depression and other mental health disorders were common in survivors.  

5. The belief that specific countries were responsible for the origin and spread of EVD led to widespread discrimination and ostracism. This, in turn, caused serious social and economic consequences. We see that scenario play out again whenever someone calls the coronavirus the “Chinese virus.” 

Fear Can Increase or Mitigate Harm 

On the other hand, fear can also mitigate harm. In the case of COVID-19, the prospect of what may happen if we do nothing is overwhelming. Therefore, our fear may motivate us to protect ourselves and our families by adhering to the advice of experts in such health organizations as CDC and WHO. That may save lives. 

Consider your own behavior in light of the five FRBs described above. Ask yourself: 

• Could any of your avoidance or panicked behaviors be accelerating the transmission of COVID-19? 

• If you have symptoms that suggest you may have the coronavirus, are you in denial rather than seeking medical care? 

• If you are coping with other medical conditions, are you avoiding the doctor's office, or are you pursuing the health care you need? 

• If you are feeling overwhelmed by the fear and stress inherent in this situation, are you seeking support or professional help? 

• Do you acknowledge, and help others understand, that China, as the unfortunate initial vector of COVID-19, bears no responsibility for it and does not deserve to be our scapegoat?

In such an interconnected world, our individual responses determine our collective experience. We must not let fear make the crisis worse. Fear can help protect us, but it can also be our enemy.

We don't need another enemy. The virus is enough of an adversary for us to deal with. We must avoid giving fear undue power over our actions and judgment at such a critical time. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

Misdirected Anger Over the Opioid Crisis Hurts Innocent People

By Dr. Lynn Webster, PNN Columnist

It's practically a cliché now to refer to the five stages of grief: denial, anger, bargaining, depression, and acceptance. However, it was Elisabeth Kübler-Ross's classic book, “On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy & Their Own Families,” that first helped us understand how people grieve.

Since the book was published over 50 years ago, mental health experts have recognized that grieving is a personal process, and that not everyone will experience all five stages. Sometimes, people skip a stage altogether, or spend more time in one part of the healing process than in another, or circle back to stages they have already traversed. It’s not always a linear process. Kübler-Ross believed grieving itself was a constructive process that moved towards healing.

While her book focuses on grief associated with death and dying, we also experience the various stages of grief with other losses. The coronavirus may cause the loss of our daily routine. Addiction may bring about the loss of our jobs, family support and even self-respect. Chronic pain may mean the loss of a life once lived. We can experience the stages of grief Kübler-Ross describes any time we are consumed by a loss.

Trapped in the Anger Stage of Grief 

For most people, anger is a part of grieving and sometimes a person gets a bit stuck in it. Experiencing prolonged anger can be destructive. We can internalize that anger, hurting ourselves, or we can express it toward others. In some cases, our rage can be directed at people we don't even know. 

Misdirected anger can cause harm. We create physical and emotional harm for ourselves when we rage at people and circumstances beyond our control. Also, we can cause harm to innocent people when they are caught in the crossfire of our misplaced anger. 

Pain News Network recounts how anger affected one of the pain community's clinicians, Dr. Thomas Kline. Kline advocates for people in chronic pain and has used social media to dispel what he feels are myths about opioids.  

A mother who lost her son to a heroin overdose came across Dr. Kline's Twitter account. In her grief, the mother took offense at what she perceived to be Dr. Kline's advocacy of opioids. She filed a complaint with North Carolina's medical board, alleging that he was "giving out information regarding opioids that is not correct and could cause harm."  

She was not Dr. Kline’s patient and neither was her son. In fact, she didn't even know him. But she was convinced he was a bad doctor because he treated people in pain with opioids. Her complaint triggered an investigation that led to Dr. Kline losing his DEA license to prescribe opioids and other controlled substances. Now his 34 patients are suffering.

It is horrible for parents to lose a child, and it is unfortunate that this mother has only a partial understanding of how opioids cause harm. 

However, we can understand her anger. She has suffered a loss, and she believes opioids killed her beloved son. "My son used opioids, and opioids are lethal. Now my son is gone. Therefore, opioids killed my son," may be her logic. 

Separating Prescription Opioids from Illicit Opioids 

It is flawed thinking to lump prescription opioids together with illicit opioids such as heroin. Prescription opioids have a medical purpose, whereas illicit opioids do not. This mother did not lose her son to an overdose of prescription medication.  

It's not only people who have had personal tragedies in their lives who may be inappropriately angry. We also see people who write about the opioid crisis, policymakers, regulators, and the public venting their contempt toward anyone who defends opioids as a legitimate therapy for some patients.   

People can be forgiven for getting angry in the moment. If they have experienced a personal loss from prescription opioids, it’s reasonable for them, in their grief, to blame opioids or the doctor who prescribed them. But it's harder to accept their vengeance when they draw a false equivalency between prescription opioids and illicit drugs.  

Opioids, like all medications, have benefits and risks. Unfortunately, people with chronic pain suffer because of misunderstanding and misplaced anger.  

People whose loved ones have died from addiction often receive sympathy, while people in pain are left unattended in the shadows. Of course, people with addiction as well as people with pain deserve treatment rather than abandonment. Anger at the doctors who use opioids to try to treat their illness is unhelpful and inappropriate. 

I'm reminded of Nan Goldin, a New York-based photographer who survived an addiction to OxyContin and has now devoted her life to fighting the opioid epidemic. Her anger is directed at the Sackler family and Purdue Pharma, whom she holds responsible for the opioid crisis — even though, according to The New York Times, Goldin "overdosed on fentanyl, which she thought was heroin."  

Neither of those substances are produced by Purdue Pharma.  

People in grief may transform their sorrow into rancor without looking squarely at the whole truth or confirming their beliefs with research. Their anger may feel healthy and productive to them, because anger provides an outlet for grief. The rage they feel against opioids and the people who manufacture, prescribe, or take them allows those grieving to not to have to deal with more difficult issues, such as the loss of a loved one or the real reasons why we develop addictions. 

In the final analysis, misdirected anger is destructive and harmful to innocent bystanders, who become collateral damage. It hurts others. It may hurt society. And it also hurts the one who is stuck in the grieving process and, unfortunately, has not yet come to a place of healing. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.