The Unnerving Impact of COVID-19 on the Chronically Ill

By Pat Akerberg, Guest Columnist

Let’s face it. Living with a debilitating chronic health condition and a global pandemic at the same time are a “double whammy” with unthinkable impacts. Trigeminal Neuralgia (TN) happens to be my medical vulnerability. Yours may be a different one putting you at risk.

Known as the “suicide disease,” TN is an excruciating facial pain disorder that is considered the worst pain known to medicine. With a tenuous prognosis, TN significantly compromises life quality and puts its sufferers at risk both medically and psychologically.

Covid-19 needs no introduction as it continues to hold a worldwide population hostage -- isolating, living in fear and starved for hopeful news.  Add living with a serious co-morbidity like mine or yours, and the stress of getting hit with the double whammy increases.

Destabilizing factors shared by TN (or your condition) and Covid-19 are several. TN patients, already vulnerable with compromised neurological and immune systems, have to be hyper-vigilant now about staying safe to avoid the scary risks Covid-19 can bring. The effects of this fear, stress and worry loom large when considering the possibility of our chronic conditions being compounded by Covid-19. 

“In my field, we have conducted a lot of work to look at what predicts who gets colds and different forms of respiratory illnesses, and who is more susceptible to getting sick,” says Christopher Fagundes, PhD, a psychological scientist at Rice University.  

“We’ve found that stress, loneliness and lack of sleep are three factors that can seriously compromise aspects of the immune system that make people more susceptible to viruses if exposed. Also, stress, loneliness and disrupted sleep promote other aspects of the immune system responsible for the production of proinflammatory cytokines to over-respond. Elevated proinflammatory cytokine production can generate sustained upper respiratory infection symptoms.”

With intractable pain, sensitized nervous systems are already compromised. Add prolonged anxiety and exhaustion to the isolation, loneliness and a loss of physical connections necessitated by social distancing, and the ground is fertile for hopelessness and depression to take root.

A form of medical neglect is taking shape too, making it harder to cope as important medical, ER or clinic visits and medication refills have been pushed aside by Covid-19.  Yet they remain urgent needs for those afflicted with ongoing conditions.

Caring families and friends are rendered helpless as they witness previously healthy, vibrant loved ones reduced by the chronic conditions that take them over.  Like Covid-19, the life altering stories of TN sufferers are hard to take in. Listen to what some are dealing with:

“I’ve had two surgeries for TN after medications were unable to stop the pain… recently, after 15 years, the pain has come roaring back!  The stress in my life caused by my inability to work during the Covid-19 isolation has triggered the TN pain… it has made it enormously worse… and I can’t even reach my doctor… sometimes I feel like giving up.”

“Things are ridiculously difficult right now. Everyone in our family is feeling it.  My husband and I feel defeated and my Mom feels stressed and overwhelmed. The kids are struggling, flip-flopping between difficult emotions. For nearly 5 years we have been telling ourselves that things will get better as we do our best to live in ‘survival mode.’ But we feel extreme failure as we are starting to see the damage survival mode has done. We aren't sure how to fix it or keep this ship afloat. It feels like we’re the Titanic after it hit the iceberg.” 

“When newly diagnosed, TN patients and their loved ones are worried sick when they discover its’ reputation as the suicide disease.  In searching for answers, they come up against gut punches instead – the discouraging lack of research historically, the poor performance of medications, and/or the disappointing impermanence or complications of risky treatments. Yet, the drive for relief is so great, they’re forced to roll the dice and choose among shortfalls.  Familiar with horror stories of what can go wrong, like a recurring nightmare they are haunted by what might happen to them, fearing their capacity to endure.” 

While we may all share the threat of this pandemic together, the truth is those of us deemed “at risk” can also feel alone as we cope with our personal medical plights. To counter such destabilizing vulnerabilities, we must recognize that the potential for this double whammy fuels an urgent need for HOPE and concrete progress now that can change lives for the better.

Hope and progress – in the forms of more research funding, lasting treatments, promising prognoses and encouraging scientific breakthroughs – can’t come soon enough! 

Pat Akerberg is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

Florence Nightingale Was Born 200 Years Ago and Is More Important Than Ever

By Roger Chriss, PNN Columnist

This week marks the 200th anniversary of Florence Nightingale’s birth. She was born on May 12, 1820, and is considered the founder of modern nursing and an innovator in the use of medical statistics.

Named for the city of Florence, Italy, where she was born, Nightingale grew up in a wealthy British family and demonstrated a gift for mathematics. She traveled extensively throughout Europe during her youth and announced her decision to enter the nursing field when she was 24, despite the opposition of her family and the restrictive social mores of Victorian England.

Nightingale made fundamental contributions to nursing and biostatistics during the Crimean War, during which she managed and trained nurses, and organized care for British soldiers.

In 1854, she identified poor care for the wounded at Selimiye Barracks in what is now Istanbul due to overworked and under-equipped medical staff and official indifference. Medicine was limited, hygiene neglected and soldiers suffered as a result, she found.

Nightingale collected meticulous records of patient outcomes in the military field hospital she managed. Then she summarized this information in a form of pie chart now known as the polar area diagram, clearly showing the benefits of improved patient care.

FLORENCE NIGHTINGALE

This visual representation of statistics was much more readily understood than conventional columns of numbers and helped convince civil servants and even members of Parliament that her findings were significant.

Nightingale applied the same methodology to a study of sanitation in rural India, playing a key role in improving medical care and public health services in that country. She found that bad drainage, contaminated water, overcrowding and poor ventilation were important risk factors in the spread of disease. Her work ultimately helped reduce mortality among British soldiers stationed in India from 69 to 18 per 1,000.

But Nightingale is best known for her role in the foundation of modern nursing. She led by example, with a commitment to patient care and medical administration.

She developed the first official nurse training program, the Nightingale School for Nurses, which opened in 1860. It is now known as the Florence Nightingale Faculty of Nursing and Midwifery at King's College London.

Her work is also remembered in the Florence Nightingale Medal for outstanding service in nursing, among many other honors in her name.

Nightingale’s work in public health and record keeping dovetailed with the first epidemiological success in Britain. In the summer of 1854, English physician John Snow showed that a cholera outbreak could be traced to the contaminated Broad Street Pump, which he stopped by simply removing the handle of the pump so people couldn’t use it anymore.

Snow’s methods involved what we would now call outbreak maps and contact tracing. And his findings inspired improvements in water and waste systems in London and around the world.

NIghtingale’s 1859 book, “Notes on Nursing: What It Is, and What It Is Not,” is a seminal text about the nature and practice of nursing. In it she wrote: “The very first requirement in a hospital is that it should do the sick no harm.”

Today, amid the global coronavirus pandemic, the dedication of nurses and the importance of medical statistics cannot be understated. Nurses are falling sick and dying at alarming rates, in part because institutional leadership is failing them. One-third of Covid-19 deaths in the U.S. are occurring among nursing home residents and staff.

Nightingale’s example needs to be recognized and followed. Her bicentennial provides a timely opportunity to emulate her lifelong dedication to medical care and public health.  

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. 

Arachnoiditis Nearly Destroyed My Life

By Robert Perry, Guest Columnist

I was a pipe welder when I first hurt my back in 1992. The doctor ordered a myelogram imaging test on my back with a chemical dye. It was one of the most painful tests I ever had. After the test the doctor told me I had to learn to live with my pain. At that time, I was only 27 years old. The doctor told me I might be able to work for another 15 years.

He was right about that. In 2008, I was a project manager at ATT and started losing the ability to use my legs. One day I couldn’t get out of bed for about 3 hours because I was having so much pain in my legs and lower back. I was screaming from the pain and the muscles spasms were so bad it made me cry.

I started falling at work and hurting so bad it was unreal, so they did an MRI on me and found I had Arachnoiditis. Since then my life has been a hard road. It’s unreal how many doctors don’t know anything about this disease. One doctor did 5 epidural steroid injections on me and made it worse.

Another doctor put a spinal cord stimulator temporarily in my back to see if it would help, but he accidentally punctured my spine and left an air bubble. I went home and late that night got a terrible headache that felt like it was killing me. My ex-wife and kids took me to the emergency room. I was about to die from the bubble in my body.

They finally found the bubble in my body by cat scan. The only way you can get a bubble out is to remain really calm, so they started giving me a strong painkiller in an IV drip.  But the nurse wasn’t paying attention and I overdosed. I knew I was dying and thank God that a person came in to clean my room and I got her to go get help.

ROBERT PERRY

I had her call my family on my cell phone. I was able to tell my family goodbye. Right after that, I lost consciousness. I finally woke up 8 hours later and the doctor was waiting on me to ask me things to see if I had any brain damage. The first thing I asked was for my dad, but I couldn’t remember that my dad was dead until they told me.

I have been through a lot because of Arachnoiditis. I lost my family and now I am married to a wonderful lady who knows I am a very sick person.  This disease is the one of the most painful. I have to take two shots a month and I am on a lot of meds. I have a good doctor now who put me on a fentanyl pain patch and my life has been a lot better.

I am a preacher and have a lot of faith. One night at church I was in so much pain the congregation was about to take me to the hospital. And I told God that night either heal me or take me. They prayed over me and I walked out of the church without any pain or my cane.

That’s was 5 years ago and I am still doing a lot better and able to live now. The doctors can’t help, but God can. I am very thankful for that night in prayer.

Arachnoiditis nearly destroyed my life. I hope they one day find a cure for this terrible disease. Before God touched me that night, I was about ready to take my life because of the pain.

Robert Perry lives in Kentucky.

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

FDA's Stem Cell Reformation Must Go Beyond COVID-19

By A. Rahman Ford, PNN Columnist

The COVID-19 crisis has been a catalyst for new regulatory flexibility at the U.S. Food and Drug Administration. The FDA is pushing aggressively to develop new vaccines and treatments for coronavirus, including dozens of clinical trials of stem cell therapies on critically ill patients.

Mesoblast recently dosed its first patients on ventilators in a 300-patient trial using its Remestemcel-L stem cell product to treat acute respiratory distress syndrome (ARDS). Pluristem Therapeutics is using placenta-derived stem cells in another trial, while The Cure Alliance is using umbilical-cord derived stem cells. GIOSTAR has a trial approved for its mesenchymal stem cells under the FDA’s “compassionate use” program. And Athersys has begun a large trial using stem cells derived from bone marrow on patients with moderate to severe ARDS.

A stem cell reformation of sorts is underway at the FDA due to the coronavirus pandemic. But what about the chronic pain crisis? About 50 million American lives with chronic pain, as opposed to 1.3 million confirmed cases of coronavirus in the U.S. to date.

The reformation is not only the result of COVID-19, but due to the simmering pressure of the American people, who have long demanded greater democracy and autonomy in medical treatment. The voice of the people and the virulence of the pandemic have merged into a veritable stem cell Martin Luther, the German monk who rejected the teachings of the Catholic Church during the Protestant Reformation.

Like those told to wait for the promise of stem cell therapy to materialize while being inundated with propaganda about “unproven” cellular treatments, Christians in the Midieval era were told to wait for a salvation controlled by an entrenched religious establishment -- when the salvation they sought was always right inside of them. 

One aspect of our current medical crisis is not new. Americans suffering with intractable chronic pain have endured perpetual crisis for a seeming eternity, waiting for the FDA to abandon its rigid, doctrinaire, one-size-fits-all approach to medical care in favor of more flexible, forward-thinking and tailored treatments.

The COVID-19 crisis — and Americans' consequent demand for solutions — has forced the FDA's hand. This demand compelled the FDA to reconsider its bureaucratic veneration of regulatory relics that denied the revolutionary novelty of stem cells.

The FDA deserves some credit for finally acknowledging the need for exploration and innovation in its clinical trial procedures. But now the agency must recognize that chronic pain - like COVID-19 - is a national medical crisis that necessitates a similar creative solution.

Stem cell regulatory innovation must not end with coronavirus. In fact, it must continue and accelerate. Yes, the current progress is heartening. However, more must be done. And needs to be done immediately. The chronic pain crisis demands it.

The FDA's current push for stem cell innovation must proceed beyond the therapeutic necessity of coronavirus. The agency needs to reform its restrictions on the use of our own stem cells for treating arthritis, neuropathy, degenerative disc disease and other chronic pain conditions.

This reform must no longer be the subject of directionless academic debate or an issue for consideration by medical "ethicists" and self-proclaimed protectors of the common good. The time for debate and delay has ended. The time for decisive action has arrived.  

At the core of the matter are the cries of millions of Americans in a critical crisis of pain that existed well before the face masks, latex gloves, hand-washing, social distancing and trillions of dollars in federal appropriations that COVID-19 has spawned.

To the FDA and Commissioner Stephen Hahn, your effort in pursuing stem cell therapy for COVID-19 treatment has not gone unnoticed. Now it is time to relax FDA regulations on the use of our own stem cells. Devolve regulatory authority to the states and their oversight, and let physicians and patients decide when stem cell therapies are appropriate.

This is the next logical step in the FDA's reformation. It is a necessary step. It is the right step.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

The opinions expressed in this column are those of the author alone and do not inherently reflect the views, opinions and/or positions of Pain News Network.

Chronic Pain and COVID-19: Why Is Treating One Disease More Noble Than the Other?

By Dr. Lynn Webster, PNN Columnist

During the coronavirus pandemic, our frontline healthcare providers have put their lives on the line, and many have paid a price. Their sacrifice is quintessentially noble, and we feel boundless respect and gratitude for their work.

Similar compassion is felt for COVID-19 patients. We are moved by the tireless efforts made to provide them with proper care, medication and life-supporting equipment.

This outpouring has led me, as a pain and addiction medicine physician, to reflect: When is healthcare noble? And why is some healthcare noble and other healthcare suspect?

There is a stark, bittersweet disparity between the esteem and appreciation we rightly bestow on COVID-19 frontline providers and the suspicion we direct toward chronic pain physicians.

Our frontline heroes in the coronavirus crisis -- regardless of patient outcomes -- are viewed as inherently noble and courageous. Conversely, those who treat people with chronic pain -- especially in cases with an adverse outcomes -- are often threatened with harsh judgment, loss of medical licenses and even incarceration.

Recently passed federal legislation provides “broad immunity” from legal liability to providers treating COVID-19 patients. Pain physicians have no such immunity.

This disparity is also mirrored in patient treatment, sometimes involving the same drug. There is a shortage of injectable fentanyl and other painkillers ventilated coronavirus patients need. The Drug Enforcement Administration recently increased the production quota for those drugs so manufacturers could produce more of them. But DEA-ordered cutbacks in the production of other opioids remain in place.

People in pain -- whether they have the coronavirus or not -- deserve the same effective and humane treatment.

As a pain physician, I have watched people with chronic conditions who are forced to live with undertreated pain for years. I have seen them fight to get through each day as the medications they need are tapered due to governmental regulations and cultural biases, rather than their physicians' decisions. I have observed their struggles with desperate options, including suicide, in the face of daily, oppressive and almost unimaginable pain.

Even as I recognize the heroism of the frontline practitioners caring for people with COVID-19, I have to wonder: How did patients with chronic pain end up on the wrong side of the empathy divide?

Pain patients feel this empathy inequity. It's not uncommon for some healthcare providers to treat them like exiles from society, as drug-seekers, malingerers or even criminals. But these "criminals" are people who have a disease that saddles them with long-term pain. Does their suffering matter less than coronavirus patients’ pain?

How must they feel about society’s outpouring of love for COVID-19 fighters and victims compared to the suspicion, derision and slander they receive?

An Opportunity for Reflection

I submit that the heroic and selfless medical response to those afflicted with COVID-19 should prompt valuable reflection by all providers on empathy and equitable treatment for all patients.

What is it about certain medical conditions that results in unprecedented concern, a willingness to muster all resources, and an outpouring of selflessness from practitioners and the public alike? Why are healthcare professionals willing to risk their lives for coronavirus patients, but not their reputations to treat chronic pain?

Some may argue that it is the immediacy of the threat and risk of death that makes the difference. But that’s a false argument. All pain is immediate and, despite what is commonly thought, people with severe chronic pain have dramatically shortened life expectancy. 

Providers on the frontlines of the lengthier, more widespread and complex pain crisis are as noble as those fighting the current pandemic. They often take on patients that others don’t want to treat. They show open-mindedness, concern and great courage in risking the respect of their peers, running afoul of misinformed authorities, or being persecuted by misguided legislation. They put aside their professional well-being to serve a seriously oppressed and underserved population.

We need to find a way to professionally restore belief in the nobility of those providers who may not cure patients, but who do offer comfort and relief. These are professionals who are willing -- often for months and years -- to fight wearying and risky battles for their patients.

If such battles received the respect they deserved, there would be nothing bittersweet about watching all members of the same profession going above and beyond the call of duty for all.

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.

The opinions expressed in this column are those of the author alone and do not inherently reflect the views, opinions and/or positions of Pain News Network.

The Other Side of Cannabis

By Madora Pennington, PNN Columnist

I knew from my friend Nick’s Facebook feed that he was a cannabis enthusiast. His posts preached how it cures pretty much everything and will lead us to world peace.

Nick never tired of encouraging me to try it for my pain from Ehlers-Danlos Syndrome, even as I explained repeatedly that since my mother was psychotic, I avoid all drugs which may cause psychosis. Theoretically, I am at higher risk for that adverse reaction.

Psychosis is a disconnection from reality. A person may have delusions, hallucinations, talk incoherently and experience agitation. Since the 1970s, researchers have been investigating whether cannabis can trigger a psychotic break or full-blown schizophrenia. Daily users of highly potent cannabis are five times more likely to develop psychosis. The risk comes not only from genetic factors, but also from early-life neglect or abuse and even being born in the winter.

Having a rare and complicated medical condition, I get a lot of advice. I took Nick’s insistence I go on cannabis as kindness, as I take all unsolicited health tips. Our social media friendship grew. When my husband and I took a trip to his part of the world, he invited us to stay with him.

Nick picked us up at the train station in the English countryside looking like a dashing movie star. Slim and trim in a crisp Oxford shirt and Ray Bans, spryly maneuvering our luggage, he was still attractive in his 70s. Speaking English like Prince Charles, he confessed, “I am actually a cannabis farmer. I expect no trouble from the local police, but would you prefer to get a hotel room in town?”

My husband and I once risked our lives in the back alleys of Hong Kong to get me a fake Hermes bag. We did not need to consult with each other. We opt for adventure. I would not miss my chance to live a Jane Austen fantasy.

We ate off Nick’s three centuries-old family silver, the forks worn down from hundreds of years of scooting food across the plate. We sat beneath the Regency era portraits of his ancestors. Nick had a room devoted to his cannabis crop, growing fast underneath sun simulating lamps. The odor from the plants permeated his entire country home.

In real life, just as on Facebook, Nick’s favorite subject was the virtues of cannabis. He had been using it since he was a young man. Decades ago, he had spent a couple of years in prison for distribution. Recently his wife had left him over his devotion to marijuana. It was clear from Nick’s stories and life choices that cannabis had created tremendous tension with his family.

We talked of him coming to stay with us in Los Angeles, how we could all go to San Francisco to visit the Haight, as Nick was a genuine 1960s hippie. But leaving home to travel was a problem for him. When he does, he has to ask a friend to tend to his plants, which also means asking the friend to break the law.

Our days with Nick at his charming cottage were governed by his need to partake. Our visits to local sites were cut short, so he could be done driving and functioning for the day, and get home to get high. He did not seem to enjoy the excursions and seemed overwhelmed by being out and about, his anxiety growing, urging us to wrap up and get back home.

Cannabis Side Effects

Like Nick, many people are certain that marijuana helps them get by. On it, life is tolerable and pleasant. Anxiety is calmed. They are out of pain and able to sleep. But are they really benefiting?

At first, marijuana has a calming effect, but over time it negatively changes the way the brain works, causing anxiety, depression and impaired social functioning. With regular use, memory, learning, attention, decision-making, coordination, emotions, and reaction time are impaired. Heavy cannabis use lowers IQ. 

This damage can persist, even after use stops. Teenage users are more likely to experience anxiety, depression and suicidality in young adulthood. According to the CDC, about 1 in 10 marijuana users will become addicted. For people who begin using younger than age 18, 1 in 6 become addicted.

As is the case with other mood-altering substances, cannabis withdrawal symptoms — which include irritability, nervousness, anxiety, depression, insomnia, loss of appetite, abdominal pain, shakiness, sweating, fever, chills and headache — provokes the desire to use.

If someone is using cannabis to escape emotional distress, they never get the chance to deal with underlying problems. Psychiatrist Dr. David Puder recommends to his patients on cannabis that they stop in order to benefit from therapy.

“When they are off of marijuana, they have the ability to be present and really process what they will need to process in therapy in order to get over anxiety and depression,” Puder says, noting that users will often experience a flood of emotions and memories once they stop.

Medical marijuana has been approved for chronic pain and over 50 other health conditions by various states. Whether it actually helps with pain is uncertain. The U.S. Surgeon General warns the potency of marijuana has changed over time and what is available today is much stronger than previous versions. Higher doses of THC (the psychoactive chemical in cannabis) are more likely to produce anxiety, agitation, paranoia and psychosis. Consumers are not adequately warned about these potential harms.

House Guests

Our friend Nick was sure his marijuana use was his choice and that he was not addicted. He insisted my husband and I get high with him.

What is a polite house guest to do? Go along, of course, although we prefer whiskey and a steak. Nick promised we would love it, and that we were free to go upstairs and have sex and open up about anything. We giggled awkwardly. I ingested the smallest possible dose.

Nick then got higher than we had seen him during our entire visit, wolfing down his dinner in minutes. Then, after promising we’d have a tremendous evening of emotional openness and transcendent sharing, he burst into tears recounting how he was the victim of violence in his youth.

I felt for him, it was a horrifying event. Was this unresolved trauma the cause of a lifetime of drug use, denial and self-isolation? We had to wonder. It was truly awkward and uncomfortable, but Nick didn’t seem to remember his outburst. When we returned home, he continued to hound me to take up cannabis.

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.

The opinions expressed in this column are those of the author alone and do not inherently reflect the views, opinions and/or positions of Pain News Network.

How to Cope with Anxiety During the Pandemic

By Ann Marie Gaudon, PNN Columnist

Some folks do not cope well when anxiety comes for a visit. They don’t consider anxiety a normal emotion or call to action, but rather as something bad that must be gotten rid of.

There is no fault here, we live in a “feel good” society bombarded by messages that if we feel distress of any kind, we must do or take or buy something to get rid of it.

I explained how emotions contain a message in my column about loneliness during the coronavirus lockdown. The message is that you must make an effort to end your loneliness by changing your behaviour. Expand your world. Talk with people, laugh with people and cry with people. Find ways to interact.

Anxiety is another emotion. The research is very clear. If you try to deny, dismiss, avoid or overreact to anxiety, it is very likely to get worse. This in turn, can wreak havoc on your overall health.

Consider for a moment that you have a “struggle switch” for anxiety (or any emotion). If you overreact to anxiety or try to avoid it, your struggle switch is flipped “ON.” 

The message during a pandemic is loud and clear: There is something serious going on and we must take action to protect ourselves and others. That anxious feeling you have is trying to protect you, not harm you. It’s a very old evolutionary response. Very good copers have learned how to make peace with their anxiety, realizing it is there in an attempt to keep them safe.

Here are ways to flip that struggle switch to “OFF.”

Pay attention on purpose. Slow down, notice and name what you are feeling. For example, “I am feeling anxious. My heart is pounding fast, and my stomach has knots in it.”

Let these bodily sensations be just as they are, without judging or evaluating them. Just breathe, slow down, and let go of the urge to do anything at all with this feeling of anxiety.

Again, this is a normal response to an abnormal situation and your body is wise to this, so just be still and observe. If you need help with this, there are endless mindfulness activities online that allow you to have your experience without trying to escape from it. Here is one you can try.

Make an intention. Ask yourself, “What will I do with this feeling of anxiety? My mind sees this as something that makes me weak and vulnerable, however I choose not to get hooked by this. I accept this anxiety as mine. What will I do with it now that it is here?”

How you respond will be clear if you remember what is important to you. Even in a world that is fearful, you can be in touch with your values. Ask yourself, “What do I want to stand for in the face of this pandemic?”

You can hold this anxiety gently, as you would a nervous puppy, and change your behaviour -- with puppy in tow.

Expand your experience. Rather than running away from anxiety, learn from it. Anxiety tells us that we are alive and there is work to be done to protect ourselves. Even in times of fear and uncertainty, there is opportunity. Necessary life changes are not all negative. You can use this anxiety as a wake up call.

In addition to protective measures such as social distancing, are there other behaviours you can take that reflect how you want to be in this world? Can you commit to actions that improve the way you treat yourself and others?

Infectious disease, like any life stressor, presents a major challenge to our coping skills. I speak about this on my website. Binge eating and zoning out on Netflix will not improve your coping skills. They are just ways to try to escape from anxiety. Hoarding toilet paper or panic buying will also not accomplish this. They are signs of over-reacting to anxiety.

Instead, focus on what you can do in this moment. Worry is normal and natural, and can help us to eliminate threat. However, worry cannot get all of our troubles to take a hike. Once we have taken our protective actions, we can focus on how to make our lives better and to nurture and enjoy our relationships and all that is important to us.

Once that struggle switch is turned “OFF,” you will see that you can commit to your values – even with anxiety coming along for the ride. 

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.

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.