Surviving COVID-19 Together

By Cynthia Toussaint, PNN Columnist

I’m a survivor. At least that’s what I’m called now that I’ve fought my way into cancer remission.

But why the new acknowledgement? As a person who’s endured childhood trauma and decades of high-impact pain with 15 comorbidities, including chronic fatigue, I earned the “survivor” label a lifetime ago. My world has been up-ended and negatively impacted in most every way since 1982.

It’s just that the aforementioned health crises were never taken as seriously. But because I’ve made it through the most aggressive form of breast cancer, I’m at last an honest-to-goodness, card-carrying survivor. Okay, I guess I’ll take it.

In any event, as a person who’s been seriously ill for nearly four decades, I’m accustomed to going from the frying pan into the fire. True to form, after enduring six months of grueling cancer treatment, I find myself coming out of a long, dark tunnel just to step into a bizarre new one. Enter COVID-19.

Yes, I’m alive, recovering well and wanting to move forward. Trouble is, there is no moving forward during this pandemic. 

More troubling, while able-bodied friends who can’t imagine life-long illness try to give comfort by reminding me that I just have to get into the new, temporary COVID rhythm, I suspect something more ominous will bring me my next survivorship card. And I’m concerned we’ll all own a piece of that plastic.

If you think about it, COVID-19 appears to be globally playing out just like a chronic illness. The virus started as something new and relatively small, a nasty bug that was different, but nothing to write home about. As it picked up steam, the threat settled in and the masses went into crisis mode. Now people are cut-off, lonely and depressed while longing for the life they had. Sound familiar?

Deep down, I’m sadly sensing there’s no going back. Like severe chronic illness, temporary isn’t an option once life has fundamentally changed on a profound level. Bad begets bad as things start going down the rabbit hole. And what of the pandemics to come?  I’m guessing the best we can hope for is acceptance and learning a new way of life. A new normal, if you will.

I don’t think healthy people have the ability or perspective to grasp this possibility. I don’t blame them, that’s understandably too bitter a pill. But that’s what we with high-impact pain do -- continue to adopt new normal after new normal due to loss, abandonment and disappointment. We carry on.

Still, right now, I deserve to be out-of-my-mind angry.

Being a cancer survivor means living with acute anxiety. If my cancer recurs, it will most likely be in the first year or two and much more aggressively. I want to live every moment I have to the fullest, but the world is shut down. I ponder whether my life partner John and I will ever again have an intimate dinner with friends, travel to an exotic destiny or go to a ballgame. I chose to fight cancer like a Tasmanian devil with the promise of life if I won mine. This feels like a massive bait and switch.

While I have the right to be hugely teed off, I’m trying like hell to make a different choice. I’m moving away from bitterness, as I learned long ago that sour grapes don’t get me squat. As my surrogate dad used to lovingly remind me, “It is what it is.”

Healthy Habits

So here’s what I’m doing to take my best shot at maintaining remission, keeping my pain in check and, yep, be a COVID survivor.

I’m using my quiet time to learn how to live the healthiest of lifestyle choices so my “terrain” will remain cancer hostile. Besides diet, exercise and finding purpose, this includes stress-management, the “Big Balance” that I’m finally learning  to master. In fact, I’m enjoying shedding my reputation as the woman who gets five things done before breakfast.

It starts with quality sleep, a HUGE challenge due to fibromyalgia and chronic fatigue syndrome. These days I’m in bed before 9pm. During this sacred, unwinding time, I don’t listen to COVID coverage or use my iPhone before falling asleep around 11pm. Instead, I meditate, tune into stimulating talk radio, and spend loving time with John and our two kitties. Happy to report I’m sleeping more restoratively than I have in two decades. And it feels like a miracle!

Another new healthy habit is checking in with my body several times a day. I lovingly ask what it needs, then nourish it. I’m deeply listening to its wisdom for the first time in my life. For example, I no longer count my swimming laps, but instead stop when it feels right. And I call it quits with my forever meaningful work before I skid into fatigue. If you know me, you know this is the new me. I’m even learning how to say “no.”  

I occasionally see a few close friends while social distancing, and John and I spend long, relaxing evenings at our neighborhood park. We eat plant-based whole foods (amping up our intake of fruits, veggies, nuts and berries), play backgammon, people/dog watch, and just sit and talk as the sun sets. I’m reconnecting with my love of film, books and music — and I’m considering getting an acting agent for disabled talent, as well as diving deep into French language and culture, a longtime passion of mine.

Perhaps most important, I live in Gratitude. I thank God for every day, for every miracle that knocks at my door. I’ve always been juiced by the big things; now the little things are just as gorgeous and life affirming. And I hold onto hope. You gotta have hope.

Hey, maybe the new normal to come will be glorious. It’s really up to us. We with high-impact pain have adaptive super powers that can lead the way for those newly initiated to serious life upset. We can be the example. Let’s stay calm, mask up, hand wash and do a dance (while six feet-apart).

I’m more than willing to add COVID survivor to my list of making-do-with-the-impossible. I gain strength and grace from knowing we’re in this together.

We got this.      

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

Election May Determine Whether Marijuana Will Be Decriminalized

By Dr. Lynn Webster, PNN Columnist

“Times have changed. Marijuana should not be a crime,” Sen. Kamala Harris (D-CA) said last year when she and Rep. Jerry Nadler (D-NY) introduced the Marijuana Opportunity Reinvestment and Expungement Act (MORE Act). The current Democratic vice-presidential nominee called the legalization of marijuana an important step "toward racial and economic justice."

“We need to start regulating marijuana and expunge marijuana convictions from the records of millions of Americans so they can get on with their lives," said Harris.  

"Racially motivated enforcement of marijuana laws has disproportionally impacted communities of color. It’s past time to right this wrong nationwide and work to view marijuana use as an issue of personal choice and public health, not criminal behavior," added Nadler, who chairs the House Judiciary Committee.

Thirty-three states and the District of Columbia have legalized medical cannabis and several states allow its recreational use.  If it became law, the MORE Act would decriminalize marijuana at the federal level by removing it as a Schedule I controlled substance.

That wouldn't instantly remove all restrictions; states could still prohibit the sale of cannabis. But the MORE Act would give states more latitude to create laws to suit their needs, establish a trust fund to support programs for communities impacted by the war on drugs, and destroy or seal records of marijuana criminal convictions.

Game Changing Legislation

This week the House Judiciary Committee passed the MORE Act and later this month the full House is expected to approve the bill and send it to Senate. Chances are the bill will not pass the Senate, because Majority Leader Sen. Mitch McConnell (R-KY) opposes it -- while paradoxically supporting hemp farming.

However, if the MORE Act passes, it would be a game changer. It could open the floodgates for the development of products that contain tetrahydrocannabinol (THC), which is the psychoactive compound in marijuana.  Some research suggests THC alone, or THC and cannabidiol (CBD) combined, could be more effective than CBD alone for treating pain, anxiety, insomnia and other conditions. More research could discover life-changing new treatments.

Since THC has rewarding properties, such as inducing euphoria, any drug that includes THC would likely be a controlled substance. Nevertheless, decriminalizing marijuana would create enormous economic opportunities for growers and anyone in the business of finding solutions to medical problems for which marijuana or its derivatives may be useful.

It doesn’t seem likely that marijuana will be decriminalized at the federal level this year. Congress criminalized marijuana in 1937 and all attempts to reform the law at the federal level have ultimately failed. Our current Senate is unlikely to change the status quo.

But the upcoming election will likely determine whether the MORE Act has a chance to become law in the near future. Democratic presidential candidate Joe Biden supports legalization and decriminalization at the federal level, while President Trump is generally opposed to changing federal marijuana laws. The election will also determine which party controls the House and Senate.

It behooves every voter to become familiar with the candidates' positions regarding cannabis. Criminalizing marijuana has caused great harm. We, as voters, have the power to change that.  

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. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find him on Twitter: @LynnRWebsterMD.

A Pained Life: Don’t Throw Out the Bathwater

By Carol Levy, PNN Columnist

In 1976, my trigeminal neuralgia started. In those days, the environment regarding chronic pain was very different. My doctor had only one agenda: He wanted to stop or reduce my constant debilitating and disabling pain.

He couldn’t cure me, so he ordered opioid pain medication. When one opioid didn’t work, he tried another; Darvon, Percocet, Percodan, Demerol. So many I can’t recall them all. When none helped, he prescribed an 8-ounce bottle of opium.

The first pharmacist who saw the opium prescription shook his head. “Sorry. We don't carry it,” he said. The next pharmacy did. “Have a seat. It'll just be a few minutes,” the pharmacist said.

I wasn't looked at askance. No questions were asked about my doctor or diagnosis. I wasn’t warned: “This is a very strong drug. You need to be careful. You could become addicted.”

They trusted that my doctor knew what he was doing. They trusted me to be a responsible patient. I doubt it ever entered the pharmacist’s mind that I might be a drug seeker or abuser.

Now the tables have totally turned. Many of us get questioned by pharmacists. And some of our doctors have stopped writing opioid prescriptions. They should be cautious, right? Because opioids are addictive, you can become dependent or have other bad side effects. And they can be used illegally.

The same is true for steroids. Yet there seem to be no politicians, physicians or groups with an agenda that are working to scare the public about steroids or trying to get doctors to stop “overprescribing” them.  

When steroids first came out there were many, many horror stories about them. The 1956 film Bigger Than Life was about a school teacher (James Mason) taking corticosteroids. They helped his pain from an autoimmune disorder, but he soon became hyper-manic and ultimately psychotic, even trying to murder his son.

His doctor reduced the dosage, but because steroids helped his pain, the teacher continued to take more than prescribed. He even goes to another town, impersonates a doctor, and writes a fake prescription to obtain more of the pills.

Sound familiar?

The movie was a caricature of the potential risks of steroids, which include dependency and addiction. Opioids have the same risks, but most patients with chronic pain take them responsibly, as most on steroids do, and they do not become addicted, try to obtain them fraudulently or go off the deep end.

There will always be bad actors who will be irresponsible, but users of any medication should not be demonized because of a few bad apples. Steroids are easily obtained and the patients who use them are not seen as potential felons. And why would they? For most patients, steroids can be very helpful.

Those who can still get opioids for their pain are often seen as potential miscreants. Yet studies also show that for most patients, opioids do help.

You don’t throw out the baby with the bathwater. You don’t create guidelines scaring doctors into not writing steroid prescriptions because a small percentage of people will misuse or abuse them.

The medical community and the government need to stop throwing out the bathwater. When they refuse to write prescriptions for opioids that have helped patients, the side effect — intentional or not — is to throw us away, too.

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.” Her blog “The Pained Life” can be found here.

Meeting the Doctor Who Helped Me Most

By Barby Ingle, PNN Columnist

In honor of September being Pain Awareness Month, I wanted to give homage to the doctor who helped me most over the past 20 years. He was in my life for about 6 years of this journey, before he retired, but he has given me tools for a lifetime.

When I arrived at Dr. Robert Schwartzman’s office for the first time, I was excited. I had met him a few years prior at a medical conference, where he agreed to treat me. Dr. Schwartzman is one of the world’s leading experts on Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). Due to high demand from other patients, there was a waiting list to see him.

I was in my wheelchair and had made the trip to Pennsylvania from Virginia, where I was staying with my sister and her husband. At the time, I was hurting all over and many of my symptoms were flaring due to the travel.  I had many types of pain going on: burning, stabbing, electric, shooting, deep, surface and bone pain. I was dizzy and felt nauseated.

My name was called and my sister and I went to the exam room. The nurse was very nice and asked all the right questions. She had me put on a gown. Then we waited.

When Dr. Schwartzman walked into the exam room to see me, he was followed by about 9 student doctors. His first words were, “Now she has Reflex Sympathetic Dystrophy. Anyone should be able to see it at first glance.” He then began pointing out all of the symptoms I had from the RSD. He knew things before I even said anything.

The doctors saw the blanching in my skin. From my face to my feet, I had discoloration. I never paid that much attention to how bad it had gotten over the years; maybe because it happened over time. I took pictures of it, but did not know that it meant RSD had spread to those areas.

The most severe burning pain was on the right side of my body. I had all the other types of pain on the left side, but the atrophy and lack of coordination were not as bad.

DR. ROBERT SCHWARTZMAN

When Dr. Schwartzman began to do neurological testing on both sides, I felt the pain. The right side was worse, but the left side was definitely affected. He discussed me being diagnosed incorrectly by my other doctors with Thoracic Outlet Syndrome and having my rib removed twice. He also guessed correctly that I had been diagnosed with temporomandibular joint dysfunction (TMJD) because of the facial pain and that I was having issues with my thyroid.

He remarked about my sweating, the swelling in some areas, and asked about my low-grade fevers, Horner syndrome and more. He discussed and noted the atrophy in my hands, arms, legs, feet, face, back and the dystonia in my hands and feet. By discussed, I mean he discussed it with the other doctors. Dr. Schwartzman hardly spoke to me.

Next, he had me do neurological tests. An easy one that you can do right now involves your hand. Take the tip of your index finger and tap it to the tip of your thumb as many times and as fast as you can. I thought that I did it very well, especially with my left hand. But Dr. Schwartzman explained the way I did it was awkward and slow, which was another symptom.

I did not understand, so he showed me. He could tap his fingers so fast that it looked like I was going in slow motion. Since then, when I ask others to do the same thing, I am amazed that I cannot go as fast, no matter how hard I try.

He watched me smile, had me stick my tongue out, and then asked if I had trouble swallowing and if my voice goes in and out sometimes. I said, "Yes, how did you know?" He said that the RSD was affecting my throat and intestines.

I had been diagnosed with gastrointestinal ischemia and gastroparesis a few years earlier. The hospitalist that performed the tests said there is a section of my intestines that was getting little to no blood. I did not understand how that was related to the RSD until I saw Dr. Schwartzman and learned that RSD causes vascular constriction, which can make it difficult to get an IV line inserted or even do blood tests.

I never realized that vascular constriction could also affect organs. I thought I was just eating too quickly or being lazy when I choked on food. I did not know why my voice changed or why I would lose it sometimes. The RSD even affected the way my nails and hair grow.

Dr. Schwartzman was spot on with everything. He added that whiplash or brachia plexus injuries are a leading cause of upper extremity RSD. Because of my additional traumas and surgeries, the RSD had spread.

Ketamine Infusions

Sometime near the end of the exam, Dr. Schwartzman said to the student doctors, “The only thing that will help this patient 100% is the coma treatment.”

I was shocked. I thought I was going to be getting outpatient ketamine infusions. I began to tear up. I kept telling myself not to cry. It is never good to cry at a doctor’s office. I wanted to be taken seriously and be strong. As soon as they left the room, tears flowed down my face. The nurse said she would be right back with all of the instructions and scripts that he was giving me.

I did not have any idea of the issues that were involved with RSD or that I had many of the symptoms. Instead of starting right away, I had to wait another 9 months to get a bed in the hospital, where I underwent 7 days of inpatient ICU ketamine infusions.

I went into the hospital in a wheelchair, but walked out on my own a week later, ready to live the next chapter in my life. That was Dec. 14, 2009. I still undergo ketamine infusion therapy about 4 times a year for booster treatments, but I am no longer on daily medications for pain.

I thank Dr. Schwartzman and all the research doctors out there coming up with treatments and scientific data for people like me with chronic rare diseases and severe life changing pain. We should always remember there is reason for hope. We just have to be active in seeking and using all of the resources available.

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.  

Can LSD Be Used to Treat Pain?

By Roger Chriss, PNN Columnist

The well-known hallucinogen LSD may have a new use. A new study published in the Journal of Psychopharmacology found evidence that LSD exerts a “protracted analgesic effect” at low doses.

The study was performed in The Netherlands on 24 healthy volunteers. Three low doses of LSD or placebo were given to the participants, who immersed a hand in near freezing water 90 minutes and five hours after dosing to assess their pain tolerance.

Results from the “Cold Pressor Test” showed that 20 micrograms of LSD “significantly increased the time that participants were able to tolerate exposure to cold (3°C) water and decreased their subjective levels of experienced pain and unpleasantness.”

It is not clear how or why LSD increased tolerance to cold water. The study authors speculate about LSD’s various actions on serotonin receptors, but also note that “an additional or alternative explanation for the analgesic effects of LSD could be hypertension-associated hypoalgesia.”

There were side effects from LSD, even at low doses. LSD slightly raised blood pressure and increased feelings of dissociation, anxiety and somatization in the volunteers. Psychological and cognitive effects were described as “very mild.”

The study has other important limitations. The Cold Pressor Test is not a good analog for real-world acute pain. And healthy volunteers in such studies tend not to be typical of the population at large. They skew young, male, and often have prior experience with the substance being evaluated that most people do not have.

Also, these studies tend not to translate to real-world use. Recent work on LSD microdosing has found “few benefits and significant downsides.”

Findings Hyped

Unfortunately, this preliminary study has already led to hype about the analgesic potential of LSD. New Atlas called it  “an incredible, first-of-its kind trial” and Futurism reported that LSD microdoses were “as effective as opioids at treating pain.”  Interesting Engineering predicted “there could be possible applications of LSD as a non-addictive pain medication.”

The Beckley Foundation, which funded the study, fed the hype with a news release that claimed the analgesic effects of LSD were “remarkably” similar to oxycodone and morphine, but without the risk of addiction.

“The present data suggests low doses of LSD could constitute a useful pain management treatment option that is not only effective in patients but is also devoid of the problematic consequences associated with current mainstay drugs, such as opioids,” said Amanda Feilding, Founder and Director of the Beckley Foundation. “We must continue to explore this with the aim of providing safer, non-addictive alternatives to pain management, and to bring people in pain a step closer to living happier, healthier and fully expressed lives.”

Misunderstanding Pain Research

The Cold Pressor Test is a standard way to assess pain threshold and tolerance. But results in the test vary significantly with water temperature, and the test is not seen as a precise analog with real-world pain. As a 2016 review noted, “No single experimental model can mimic the complex nature of clinical pain.”

Pain is a biopsychosocial phenomenon involving a long chain of interactions that start with peripheral sensory nerve endings and manifest in the conscious mind. Analgesic effect can be achieved locally in nerve endings, as seen with lidocaine injections; or intermediately in the spinal cord, as seen with radio frequency ablation or spinal cord simulators; or centrally in the brain, as seen with psychoactive drugs.

Therefore, comparing analgesic efficacy is far more complex than just looking at outcomes in a simple lab-induced pain model in a handful of healthy people. The LSD study did not test its subjects with multiple substances or combinations of substances.

Further, analgesics have to be safe and effective. Safety includes understanding possible drug-drug interactions. A 2008 review noted that “lithium and some tricyclic antidepressants have also been reported to increase the effects of LSD.”

A 2019 study describes several important biochemical pathways and gene polymorphisms in LSD metabolism, possibly affecting pharmacokinetics and pharmacodynamics. The article concludes that “drug-drug interaction studies in humans are required to further assess the clinical relevance of these findings.”

Analgesics like acetaminophen have relatively few drug-drug interactions. Opioids have a number of important ones, but these are well-understood and can be controlled. By contrast, cannabis is messy. Drugs.com lists 24 major and 353 moderate interactions for cannabis. There is no such list for LSD.

Pain medication needs to be effective as well as safe and reliable. Demonstrating efficacy requires far more than a handful of willing subjects being subjected to a simulated pain experience in a laboratory setting. Demonstrating safety and reliability will require extensive testing, pharmacodynamic studies, and research on drug-drug interactions. LSD may have taken the first step toward becoming an analgesic, but there is a long road ahead.

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. 

CDC Is Prioritizing Politics Over Science

By Dr. Lynn Webster, PNN Columnist

For most of my career, I have revered the Centers for Disease Control and Prevention (CDC). I believed it had the best scientists in the world, and that we could and should believe everything they said.

Not anymore. Unfortunately, the CDC has devolved into a partisan mouthpiece for politicians and people with agendas not supported by science.

The Academy Award-winning documentary Under Our Skin first showed me how politics can influence decisions at the CDC. The film illustrates how chronic Lyme disease (CLD) can cause a great deal of suffering, including chronic pain and fatigue. But the medical community has been unwilling to respond appropriately because the government has determined that CLD is a "controversial" diagnosis.

As a result, patients with Lyme disease often go undiagnosed and untreated until their symptoms worsen. The ongoing "Lyme wars" make it difficult for them to get testing and treatment.

Contagion is a theatrical movie about a pandemic that shows the CDC making decisions based on the political aspirations of key CDC officers. But this fictional story about a pandemic and the power-seeking nature of CDC officials was unfortunately prescient.

CDC Has Done Better

We have seen the tremendous work the CDC can do worldwide. The Ebola virus was contained, and potentially millions of lives were saved, because of the stellar work of enormously talented and dedicated CDC scientists.

The CDC activated its Emergency Response Center to protect the United States and its territories from the threat of the Zika virus, which can cause birth defects and Guillain-Barré Syndrome. My childbearing-age daughter cancelled trips to areas that the CDC warned posed a high risk.

The agency conducted more than 160,000 Zika virus tests, created registries to track pregnant women who were known to be infected with the virus, and provided $251 million in grants to state and local health departments. Their ongoing efforts to minimize the damage from Zika demonstrates the exemplary work the CDC can perform.

CDC's Politicization Is Not Partisan

The politicizing of the CDC is nothing new. During the Obama administration, the CDC became a tool of anti-opioid zealots. Republican Rep. Harold (Hal) Rogers of Kentucky is a senior member of the House Appropriations Committee. You may have heard his name recently, because he helped determine the amount of the CDC's emergency funding for the coronavirus.  

President Obama joined Rogers at the National RX Drug Abuse and Heroin Summit in 2016 to support increased funding to address prescription drug abuse. That action ignored the larger problem of illicit drug abuse and the fact that the opioid crisis has been mischaracterized as a prescription drug problem.

CDC Harmed Millions With Its Opioid Guideline

When Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group, was unable to get what they demanded from the FDA through a citizen petition, they turned to the CDC, where they found political allies. This led to the now infamous CDC Guideline for Prescribing Opioids for Chronic Pain in 2016. 

The guideline has caused enormous harm to millions of Americans. Recently, the American Medical Association implored the CDC to significantly change the guideline "to protect patients with pain from the ongoing unintended consequences and misapplication of the guidance." Even the guideline’s authors have backpedaled, acknowledging it has been misapplied to withhold opioid medication from patients who need it.

Yet the harm continues. Alarmingly, the Department of Justice interprets the guideline as a mandate, warning and sometimes prosecuting doctors who do not follow its voluntary recommendations. Dozens of states have blindly adopted the guideline in a naïve attempt to address the rising number of drug overdose deaths, either not understanding or ignoring the fact that most overdoses are due to illicit, rather than prescription drugs. 

COVID-19 Flip Flops

Now we see the CDC yo-yoing with their recommendations regarding COVID-19. Initially, the CDC said that masks were not necessary, except for those who were sick or taking care of someone who was sick. Now they recommend that everyone wear a mask. The Trump administration wants to leave that decision up to individuals, so they have not issued a federal mask mandate. This is contrary to the advice of most experts.

The CDC has also stated that testing for COVID-19 is important. But when the administration apparently pressured the CDC to change their position and recommend that asymptomatic people who were exposed to the virus not get tested, they did so, allowing politics to trump (no pun intended) science. CDC Director Dr. Robert Redfeld has now reversed his position and said COVID-19 testing is important for those who have been exposed to the virus, even if they are asymptomatic.

I agree with Dr. Leana Wen, a well-recognized authority on public health, who wrote in The Washington Post that the CDC’s testing guidance was “nonsensical.”

"I worry that this CDC change is part of a larger pattern of diluting recommendations when the federal government can’t do its job properly," Wen wrote.

Perhaps we all should worry. Who and what are we to believe? I, for one, can no longer believe what the CDC says unless it is verified by non-partisan scientific bodies.

This is a sad time. Our health is being played with as if it were a game. I feel like a commoner in Game of Thrones, as the kings fight for power and ignore their people. We, the commoners, should insist that the CDC become an independent agency no longer headed by a political appointee, so it would be unassailable by politicians who are more interested in controlling messages than diseases. 

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. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find him on Twitter: @LynnRWebsterMD.

Pain Is Not a Competition

By Mia Maysack, PNN Columnist

A question I've often encountered is, “Why make pain political?”

Here's a newsflash for everyone:  It was created that way. And not initially by us, I might add.  

Despite having lived with chronic head pain every single day for over 20 years, I’m still fighting for a proper diagnosis. The more tests, appointments, examinations and permission slips I get only feeds into the perpetual cycle of phone tag, hold music and Zoom links. Not to mention pandemic induced anxiety.

It's all done in the name of “patient centeredness,” but I find it all confining and traumatizing.     

This has led to me visiting with healthcare providers very minimally. I’m grateful to be able to slowly but surely distance myself, but I’m also aware that many won’t ever have that option or luxury. I have always been conscious of my privilege, almost dying while minding my own business as a 10-year old has a tendency to humble a person. That’s part of what fuels my fire to fight not only my own battles, but for the sake of others in the form of activism.

Common misconceptions are that a person must be able-bodied in order to participate in their own advocacy or that we are permitted only to advocate for a specific cause, such as limiting ourselves to whatever pain condition or treatment we identify with.

But if we expect people to care about what we’re going through, wouldn’t inclusiveness for other causes be a demonstration of mutual respect and support?  That is lacking in the pain community and beyond.  

For example, I’m severely allergic to most medications, specifically the “good stuff” for pain relief. But that hasn’t stopped me from being involved in efforts pertaining to the opioid crisis and healthcare access in general.

I was once invited to speak at a patient protest where I would have otherwise remained silent. Other patients who were there understandably did not want to be judged, ridiculed, exiled or singled out for speaking up about opioid medication, so I stepped up and shared my own story. For that, I was shamed afterwards, due to the fact I am not physically tolerant of pills!

If that ain’t political, I don’t know what is.                

It has been my experience that there’s tremendous difficulty in acknowledging someone else’s perception as being equally real and valuable as one’s own. This leads to a self-defense mechanism, cultivating a sense of validation that can come across as belittling what others have gone through. No one really knows what it is like to live a day in someone else's shoes

I don’t participate in groups fixated on ONE type of ailment. Discomfort of all kinds should be invited and welcomed because hurt does not discriminate and misery can’t be measured. Pain is not a competition. 

I have felt the need to step away from people who are not supportive. Instead of working to strengthen the inner bond that unites us, many would rather convey how much worse they have it than everybody else, instead of listening and learning from others.  

We're in the thick of it as a collective right now. It is necessary for the sake of our lives to inch closer toward a willingness to grow and project hope, especially when it feels like there is none.  That's how we can save ourselves and one another.   

Focusing on what separates us as opposed to how we're able to relate as humans is overly prevalent throughout the pain community and beyond. Suffering is playing out on a global scale and is much bigger than any of us. We’ll never drive true change in healthcare if we dismantle each other instead of the systems we’re fighting against.

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.

Developing a Covid-19 Vaccine Requires Patience

By Dr. Lynn Webster, PNN Columnist

There is a worldwide race to find a vaccine for the coronavirus. This is a good thing. We all want a vaccine. Everyone is eager to get back to a "new normal" — whatever that will mean — but it's unlikely to happen until we have an effective and safe COVID-19 vaccine.

The pandemic has already cost us more than 700,000 deaths around the world. The sooner we are able to manufacture and distribute a trustworthy vaccine, the better. The company and country that develop an effective vaccine first will likely be credited with saving hundreds of thousands of lives. The company that wins the race may benefit financially. Prestige and power are also at stake.

Researchers who were already working on vaccines for other coronaviruses, such as SARS and MERS, when the pandemic hit have an advantage. Several companies claim to be on the brink of developing a vaccine. Moderna, Pfizer and AstraZeneca are among the pharmaceutical leaders that have fast-tracked the testing process and claim to be almost ready with a vaccine.

However, rushing a vaccine to market could be dangerous. It typically requires many years to develop a new vaccine because it can take weeks for antibodies to emerge -- and even longer for negative side effects to develop. It may take several months to a year for some adverse effects to emerge, so studies require long-term follow-up to track thousands of vaccinated patients.

Many things can go wrong. The Cutter incident in 1955 was a tragic example of this. America's first polio vaccine caused 400,000 cases of polio, paralyzing 200 children and killing 10. The mass effort to immunize children against polio had to be suspended, and laws were put in place to ensure federal regulation of future vaccines.

There have been other vaccine-related fiascos, too. They should teach us all to be cautious and exercise patience with the development of new inoculations — even one as urgently needed as a COVID-19 vaccine.

Russia’s Vaccine 

On August 11, President Vladimir Putin announced that Russia has developed a COVID-19 vaccine. He even claimed that one of his daughters had been vaccinated. However, reports state the vaccine has not been tested beyond some of Russia's elite and military personnel. Results have not been published, and the vaccine has yet to be certified as either effective or safe. 

Last year, more than 800 scientific publications by Russian scientists had to be withdrawn because they contained plagiarized and fraudulent data. This does not bode well for the veracity of Russia's current claims of a vaccine discovery. 

Developing an effective vaccine will take time. However, we should allow as much time as it requires to ensure the vaccine's safety. We cannot cut corners, or people will be harmed. We also need to trust the source of the reported progress. It makes sense to be cautious about accepting anything Russian scientists or its leadership purport to have accomplished. 

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

My Name Is Fibromyalgia

By Cathy Kean, Guest Columnist

I am an unwelcome, uninvited, germinating presence that has come to invade your peaceful existence. You will never be the same. I will fill you with misery and take over every aspect of your life. My name is fibromyalgia.

When I am feeling especially mischievous, I will cause you aches and extreme pain. I will rob you of your strength, energy and cognition. You will try to formulate a complete sentence, but only to be able to grasp a few basic words. This is called fibro fog.

I will make it difficult for you to concentrate on anything and your memory will suffer drastically! You will be told constantly by others, “Don’t you remember I told you?” They’ll be thinking you are intentionally trying to get out of something.

I see your frustration and I see your sorrow. Once you were an outgoing, social and engaging individual. Now you are pretty much a recluse. See? I am good at what I do.

You think you can get rid of me by going from doctor to doctor? Silly one, you have been to 8 doctors already and they all discount you by saying, “There is nothing wrong. It’s all in your head.”

Wreaking havoc is what I do best. I will rob you of sleep and much more. I’ll make your body temperature go crazy hot when it’s cold, and cold when it’s hot. You will never feel comfortable again.

I’ll give you digestive issues, anxiety and depression. You will experience lack of control, grief, worry, immune dysfunction, chest pain, panic attacks, inflammation, insomnia and memory loss. Your body will be overly sensitive to pretty much everything, thanks to me!

I will introduce a new sensation into your existence called “noxious stimuli.” It could be a bad smell, bright light, noise, anything. Because your body is now overly sensitive, it will react strongly to just about anything. The lights will be too bright when they’re just fine for everyone else. The same goes for visual chaos, heat, cold and pressure on your skin.

Your nerves will overreact to the things around you and your brain will get overloaded when it gets these signals that intensify your pain.

I will attack you when you least expect it. You will have no way of knowing when, because I am always present, always lurking around! This will hurt your family, your career, your outlook and your sense of self. I will follow you everywhere, never a reprieve!

When I am angry, your days will be hell and your nights sleepless. I’ll be behind you, beside you, everywhere, every day. To the point where you will not remember a time when you lived outside of my grasp.

Imagine feeling like you were burning from the inside out. The stress will be huge and will exacerbate all your other conditions! Your bones will feel like someone is using a jackhammer on them, especially during a change of weather.

Emotionally, I will make it so anything, even something little, will stress and worry you, which will make your body rebel and symptoms flare up just for the fun of it. Your nerves will create phantom itches that will make you scratch yourself raw. The simplest tasks will take you 10 times longer and five times as much energy to finish.

Because I am an invisible illness, others will not be able to see your pain, suffering and degree of sickness. You will hear comments such as:

• “But you don’t look sick.”

• “Must be nice to sit in bed all day.”

• “Your pain can’t be that bad.”

• “If you ate better, you’d feel better.”

You will be called lazy, a liar, faker, fabricator and more.

Because I make you hurt so much, you will need pain relief. The most effective and efficient medication for your symptoms will be prescription opiates. But they have been stigmatized and demonized by doctors, family, government and more. You will be called a drug seeker, an addict, and a druggie. So many hurtful, demeaning labels will be placed upon you which will hurt, damage and wound your soul.

Why? You didn’t ask for this!

It’s because of ignorance! The media has inundated the public by selling them a sensationalized, false and inaccurate narrative about opioids to sell papers and get ratings. Judgmental people who jump to conclusions without researching the true answers.

Shame on them for their cruelty. They make my job so easy, which is to inflict pain, suffering and mayhem.

So here I am, fibromyalgia, your new friend. I am always looking for others to invade and conquer. Unless you’ve walked in the shoes of others who are afflicted, you will never know the depth of their struggles.

Cathy Kean lives in California. She is a grandmother of 7 and mother of 4. Cathy has lived with intractable pain for 14 years from a botched surgery, along with fibromyalgia, arachnoiditis, stiff person syndrome, lupus, Parkinson's disease and insomnia. Cathy is the creator and administrator of the Facebook pages Chronic Illness Awareness and Advocacy Coalition and Pain is Pain.

Becoming Aware of Ingrained Thoughts Can Reduce Pain and Anxiety

By Dr. David Hanscom, PNN Columnist

Self-awareness is the essence of healing. You cannot stimulate your brain to develop in a given direction unless you become aware of who you are and where you are starting from. Awareness is a meditative tool that can be used to calm the nervous system, reduce chronic pain and anxiety, and move forward with your life.

There are four patterns of awareness that I’ve written about in previous columns that work for me:

Environmental awareness is placing your attention on a single sensation – taste, touch, sound, temperature, etc. What you are doing is switching sensory input from racing thoughts about pain to another sensation. This is the basis of mindfulness – fully experiencing what you are doing in the moment.

I use an abbreviated version that I call “active meditation,” which is placing my attention on a specific sensory input for 5 to 10 seconds. It is simple and can be done multiple times per day.  

Emotional awareness is more challenging. It often works for a while, but then it doesn’t. When you are suppressing feelings of anxiety, your body’s chemistry is still off and full of stress hormones. This translates into pain and other physical symptoms.

Allowing yourself to feel all of your emotions is the first step in healing because you can’t change what you can’t feel. Everyone that is alive has anxiety. It is how we survive.

Judgment awareness is a major contributor to the mental chaos in our lives. You create a “story” or a judgment about yourself, another person or situation that tends to critical and inflexible.

Dr. David Burns in his book “Feeling Good” outlines 10 cognitive distortions that are a core part of our upbringing. They include:

• Labeling yourself or others

• “Should” thinking – the essence of perfectionism

• Focusing on the negative

• Minimizing the positive

• Catastrophizing

These ingrained thoughts are the fourth and most problematic to be aware of. You cannot see or correct them without actively seeking them out.

Our Brains Are Programmed at an Early Age

Our family interactions in childhood are at the root of how we act as adults. They stem from our upbringing and the fact that our brains are “hard-wired” during our formative years. We know from recent neuroscience research that concepts and attitudes from childhood are embedded in our brains as concretely as our perception of a chair or table.  

I used to say that thoughts are real because they cause neurochemical responses in your body. But they are not reality. I was wrong.  

It turns out that your thoughts and ideals are your version of reality. Your current life outlook continues to evolve along the lines of your early programming or “filter.” It is why we become so attached to our politics, religion, belief systems, etc. It is also the reason that humans treat each other so badly based on labels.  

One example, amongst an endless list, was how we locked up “communists” during the McCarthy era of the 1950’s and 1960’s. It is also why so many minority groups are persecuted and often treat each other badly. 

It is critical to understand that these are attitudes and behaviors that you cannot see because they are inherent to who you are. It is also maybe the greatest obstacle to people getting along. We are hard-wired enough that we don’t recognize or feel these patterns -- it’s just what we do. It’s behavior that sits under many layers of defenses and has to be dug out by each person.  

Our family-influenced habits and actions are much more obvious to our spouses and immediate family than they are to us. We can only get in touch with them through counseling, seminars, psychotherapy, self-reflection, spousal feedback, etc. What you are not aware of can and will control you.  

Slowing Down 

Here is an example of awareness I learned at work. A few years ago, before I retired as a spine surgeon, I became aware that I consistently started to speed up towards the end of each surgery. I also realized that over the years, probably 80% of my dural tears (the envelope of spinal tissue containing the nerves and cerebrospinal fluid) occurred in the last 30 minutes of a long surgery.  

The fatigue factor was part of the problem, but speed was more critical. I still didn’t notice that I was speeding up. I needed feedback from my partners or assistants, so I asked them to act as my coaches. I’d stop for a few seconds and say, “The difficult part of this case is done. It would be easy for me to relax and hurry to finish. Please speak up if you see me starting to rush.”  

Every move in spine surgery is critical, so I had to make the choice to consciously slow down. The end of each surgery is just as important as the beginning and middle. My complication rate dropped dramatically when I became more aware of what I was doing. 

This is a brief overview of how awareness plays a role in successfully navigating daily life. It’s something of a paradox, because when we are truly immersed in the moment there are no levels of awareness. It’s just complete “engagement-in-the-present-moment” awareness.

There are many layers to this discussion, but I hope this is a good starting point for you to understand the importance of mindful awareness.  

Dr. David Hanscom is a retired spinal surgeon. He recently launched a new website – The DOC Journey – to share his own experience with chronic pain and to offer a pathway out of mental and physical pain through mindful awareness and meditation.

What Is the Best Kind of Face Covering?

By Dr. Lynn Webster, PNN Columnist

As we learn more about COVID-19, top health officials have updated their advice about how we can protect ourselves from the virus.

On February 29, U.S. Surgeon General Jerome Adams, MD, tweeted: "Seriously people- STOP BUYING MASKS! They are NOT effective in preventing general public from catching #Coronavirus."

By July 20, Adams had changed his mind and was urging the public to “wear a face covering," although he still believes that wearing a mask should not be nationally mandated.

The Centers for Disease Control and Prevention also recommends wearing face masks when we are out in public and social distancing is difficult to maintain, or when we are around people who do not live in our household. So does the Food and Drug Administration.

There are different types of face masks, though, and some work better than others.

N95 masks provide the best possible protection, followed by surgical masks, but they should be reserved for healthcare workers. Personal protective equipment (PPE) is still in short supply globally because of hoarding, misuse and increased demand -- which puts healthcare workers and their patients at risk.

Members of the public can buy or make their own cloth masks to wear. Laboratory tests have shown that, when worn properly, cloth masks reduce the spray of viral droplets.

Some individuals, however, find it uncomfortable to wear a mask, or they may have a medical condition or disability that makes it difficult for them to breathe. Face masks may also fog up eyeglasses, irritate skin and inhibit communication by muffling the voice. People also frequently touch their faces to adjust or remove their masks, and that may increase the risk of infection.

Not all face masks provide equal protection. At best, cloth masks can be as effective as surgical masks. But using some variants, such as “neck gaiters” made of a polyester spandex, may even be worse than not wearing a mask at all.

Neck gaiters are less restrictive than masks, so they may be more comfortable. But their porous fabric breaks large viral particles into smaller ones, and that may allow them to linger in the air for a longer period of time. That makes them risky to the wearer and people around them.

Face Shields May Be Better Alternative

Jennifer Veltman, MD, chief of infectious diseases at Loma Linda University Health, recommends face shields made of clear plastic or plexiglass to people who are unable or unwilling to wear a mask. According to Veltman, if someone coughs 18 inches from you while you are wearing a face shield, the viral exposure is reduced by 96 percent.

Dr. Amesh Adalja, a senior scholar with the Johns Hopkins Center for Health Security, believes that face shields may eventually replace cloth masks because they are more comfortable to wear and easier to breathe with. And because they extend down from the forehead, face shields protect the eyes as well as the nose and mouth. That can be important since viruses can enter the body via the eyes. It is also easy to wipe face shields clean and reuse them.

Dr. Frank Esper, a pediatric infectious disease specialist at the Cleveland Clinic, agrees that face shields have many benefits over cloth masks. However, they also have drawbacks. For example, he points out that viruses survive longer on plastic face shields than on cloth masks. Also, if a person wearing a face shield coughs, viral droplets can escape because of the gap between the shield and the mouth.

Dr. Anthony Fauci, the nation’s top infectious disease expert, says, "If you have goggles or an eye shield, you should use it. It's not universally recommended, but if you really want to be complete, you should probably use it if you can.”

White House coronavirus response coordinator Dr. Deborah Birx may have the best recommendation of all: wear a cloth mask and a face shield simultaneously. The mask, she says, protects others, while the face shields protect wearers.

Advice about how to protect ourselves will evolve as we learn more about the virus. We’ll be needing face coverings for an indefinite time period, so it is wise to become familiar with the different options for protecting yourself and your family.

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 Dismal Trajectory of Covid-19

By Roger Chriss, PNN Columnist

The coronavirus pandemic continues to sweep across the United States. So too does misleading information about the pandemic and its likely trajectory.

“We have fewer deaths per capita than the United Kingdom and most other nations in Western Europe, and heading for even stronger numbers,” President Trump said in a press briefing this week.

Although the U.S. has a lower per capita death rate from Covid-19 than some European nations, the president’s claim is both mistaken and simplistic. Worldwide, the U.S. ranks fourth in deaths per 100,000 people, according to the Johns Hopkins Coronavirus Resource Center.

More important is the trajectory of the pandemic. European nations were hit hard by the coronavirus early on. For example, Belgium, Italy and Spain saw most of their deaths in March and April, and almost none since.

It is more informative to look at how countries have done after the initial onslaught. In other words, what are the trends since May 1st?

The trends in the U.S. are dismal, with only Brazil and India beginning to compare. According to STAT News’ Covid-19 Tracker, the U.S. has had over 100,000 deaths since May 1. Spain, by comparison, has had 3,600 deaths; Belgium: 1,300; Sweden: 3,000; Italy: 7,000; and the United Kingdom: 19,000 deaths.

In other words, the U.S. has had about three times as many deaths as all the other countries listed above combined, whose population is 192 million or about two-thirds that of the U.S. Only the United Kingdom has a comparable rate of increase in deaths.

Trends for confirmed cases since May 1 are even worse. Back then the U.S. had just over 1 million coronavirus cases. It has since more than quintupled, now totaling over 5.2 million cases. In that same time period, infections in the UK doubled and most other European countries barely added any.

Disease trajectories look even worse for the U.S., which keeps adding more than 50,000 new cases daily, despite testing rates falling by over 10% since mid-July. On August 11, the U.S. saw about 1,500 deaths, more than the total number of deaths in Belgium since May 1.

A More Realistic Case-Fatality Rate

Covid-19 deaths lag new infections by about four weeks. This means the total deaths today can be divided by the total number of cases from four weeks ago to determine what the death rate is.

Covid Tracking data shows the U.S. had 145,245 deaths as of July 31. Four weeks prior to that, on July 3, there were 2,786,467 cases. This gives a case-fatality rate of 5.21% for those dates, higher because of the temporal adjustment that accounts for how Covid-19 behaves.

Moreover, because of more testing, the U.S. has greatly increased its total number of confirmed cases, which in turn lowers the case-fatality ratio. In other words, improvements in the case-fatality ratio are due to testing rates rising even faster than death rates, and not because of an effective pandemic response.

Further, there is considerable under-reporting of deaths in the U.S. For instance, some states have updated their numbers with backfill deaths, as New Jersey did with 1,800 deaths in June, Texas did with 631 in July, and Florida did with dozens last week.

It is also informative to look at the total number of deaths. A new analysis by The New York Times estimates that there could be as many as 200,000 excess deaths attributable to Covid-19 by late July.

Lasting Symptoms

We’re also learning that people who recover from Covid-19 often have symptoms that linger long after the active virus goes away. The CDC reports that about a third of patients with Covid take more than three weeks to recover.

Dr. Anthony Fauci, told STAT News that many survivors suffer from profound exhaustion, muscle pain, headaches, and have trouble thinking and remembering – symptoms that are “highly suggestive” of myalgic encephalomyelitis, the chronic illness commonly called chronic fatigue syndrome or ME/CFS.  

The coronavirus pandemic is now recognized as being as deadly as the 1918 flu pandemic. The worst may yet lay ahead. CDC director Dr. Robert Redfield recently warned that when autumn arrives and the flu season returns, the U.S. could be facing the “worst fall” in its history if more Americans do not adopt prevention measures like wearing masks and social distancing.

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. 

Does Transparency in Pricing Really Lower Healthcare Costs?

By Barby Ingle, PNN Columnist

Each year I get asked to support multiple legislative bills that could impact the chronic pain community. I look through them, think them through, and have written, called, testified and shared many over the years.

But sometimes a bill I supported comes back to haunt me as a patient. The intended consequences are not what I thought they would be.

Such is the case in Arizona, where I live. A state law was passed in 2013 calling for transparency in healthcare pricing (HB 2045). The law requires most healthcare providers to tell patients the “direct pay price” for a service or procedure. I always thought it was a good thing to have transparency in pricing and for patients to know what their responsibility is, so I supported the bill.

In 2019, Arizona passed another law (HB 2166) that authorized providers to collect “advance payments” from patients before a service is performed and without waiting for insurers to pay. The new law was quick to be adopted and providers have already started using it more than expected. This is causing an issue in getting the healthcare we need in a proper and timely manner.

The law really didn't affect me until this year, when I went through all the testing and multiple office visits with a new provider. Then I was called to the office of the “scheduling manager.” This was right after the doctor told me that I need a procedure on my bladder. I have an issue known as neurogenic bladder, where I lose control of my bladder nerves and muscles.

In the office, the woman wrote on a piece of paper the cost of the procedure ($30,000) based on my insurance (Medicare) and how much I would have to pay in advance, which was $6,000.

Before the law went into effect, I could pay the bill over time and get the procedure done when I needed it. But now, she says, I had to pay the entire $6,000 before even scheduling the procedure. I do not have $6,000 to pay upfront, so I am unable to schedule it.

New Hospital Rules

Arizona is not the only state that has passed healthcare price transparency laws; California, Connecticut, Louisiana, Maine, Maryland, Nevada, Oregon, Tennessee and Vermont have similar laws.

Federal rules are slated to go into effect in January, 2021 that will require hospitals to disclose their price information, including their negotiated prices with insurers. It is part of an effort by the Trump administration to increase price transparency in hopes of lowering healthcare costs on everything from hospital services to prescription medicines.

The federal efforts are controversial and have already faced court challenges. For good reason, seeing how transparency is being implemented in Arizona.  

Both HB 2045 and HB 2166 are good examples of bills I advocated for that are now being used against me and others in the chronic pain community who are low income or under-insured. It’s just a new way to stop healthcare or slow it down. Instead of having insurance companies delay care with prior authorizations and step therapy -- which I have been through as well -- they stop you at the doctor's office now.  

The same thing happened when I came down with Valley Fever pneumonia this past November. My provider ordered chest x-rays, but before I could get them, I had to pay my portion of the bill. I had to borrow money to get the x-rays done.  

Turns out I was way sicker than my provider thought and he apologized afterwards. Once I was diagnosed, follow up x-rays were covered, except when one lady was at the desk. She always charges me and says she has to because of the price transparency rules.  

I am hearing more and more stories about HB 2166 being used against the chronic and rare disease communities. As I said, it is odd to not want full transparency, but I would rather have access to healthcare when it is needed and then work on paying the bill afterward. Otherwise, like me, many of you may not receive the care you need, making our health worse and more expensive. 

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. 

Finding Pain Relief in a Virtual World

By Madora Pennington, PNN Columnist

I am sitting on a deserted beach in Tasmania, listening to the gently lapping waves. All my worries fade in just 3 minutes.

While on my couch, I am touring the famous sites of London. Have I been on vacation? I feel as if I have.

I am by a creek in Bavaria. Water gently crashes against the rocks. Leaves fall to the ground. In four minutes, I am in state of joy.

Underwater with a school of dolphins, twisting my head to get the best views as they swim above me and all around, I forget anything that bothers me, physical or mental.

How can I be in so many places? I am using a virtual reality program designed to relieve chronic pain. I love it. I look forward to doing it every day.

Later, when I am out and about, a sound I heard during my VR sessions, perhaps the swaying of a tree, makes my body relax without effort.

The AppliedVR headset I am using looks like a blacked-out snorkeling mask. It came with a warning not to expose it to direct sunlight, and to take great care not to scratch the lenses. The company loaned me the device to try at no cost and with no stipulations for this review.

Virtual reality (VR) had its start as entertainment in video gaming. Headsets have speakers or earphones, and are usually connected to a joystick or hand controller. When the user moves their head, tracking software shifts the images, providing an immersive experience into a full 360-degree view of a 3D world.

Besides gaming, VR has a growing number of practical uses. VR technology is used to teach dangerous jobs like piloting or to give doctors simulated practice at surgery. The U.S. military uses VR to train soldiers to fight and build mental resilience for battle. Ford employees use VR to inspect and look for problems in virtual automobiles before they are even manufactured. Architects and engineers use it to evaluate and find problems in their design work.

In a medical setting, VR therapy was first used in caring for patients who suffered burn wounds, which can be so painful that even opioids can be insufficient. A study found that VR, when coupled with pain medication, provided burn patients with significant relief.

More Than Just Distraction

How does VR make such a difference in pain?

“The most acceptable theory is the Gate theory of attention. It postulates that VR reduces the perception of pain by absorbing and diverting attention away from pain,” says Dr. Medhat Mikhael, a pain management specialist.

But there’s more to it. Dr. Brennan Spiegel, director of Cedars-Sinai's Health Service Research, completed a VR study on 120 hospitalized patients in 2019, which showed that VR significantly reduces pain. It was most effective for severe pain.

“Virtual reality is a mind-body treatment that is based in real science. It does more than just distract the mind from pain, but also helps to block pain signals from reaching the brain, offering a drug-free supplement to traditional pain management," Spiegel said.

Short-term, acute pain is a different beast than chronic pain. Only a few studies have been done using VR to treat chronic pain, which can overwhelm the nervous system, making the body even more sensitive to and aware of pain. This cycle can become so entrenched it can cause the body to interpret benign stimuli, such as the light brush of fabric against skin, as painful.

Early studies on VR for chronic pain are promising. In a study published in 2016, chronic pain patients had an average 60% reduction in pain from VR treatment. A third of the participants experienced total pain relief while doing VR sessions. They had a wide variety of conditions, such as spine pain, hip pain, myalgia, connective tissue disease, interstitial cystitis, chest pain, shoulder pain, abdominal pain and neuropathy. 

Another study recently found that VR reduces pain and improves mood and sleep in people living with fibromyalgia or chronic lower back pain.  

Pain Drifts Away

I’ve had a lifetime of chronic pain from the collagen disease, Ehlers-Danlos Syndrome. My body is very weak and flimsy. Having chronic pain and disability sometimes makes me feel resentful and betrayed by my own body.

In one VR session, I stare into the heavens. I am shown a projection of a human body and nervous system. A kind, encouraging woman explains simply and compassionately the phenomenon of pain. I hate my body less in two minutes.

Ordinarily, I would never play a video game. I don’t like cartoons. Meditating makes me anxious. I find it difficult to even lose myself watching a movie. I would not have thought I would respond well to virtual reality. But from the first brief session, I did.

I learned how to calm and balance my nervous system in an animated forest. Gently encouraged to breathe in time with a giant whimsical tree, the ground and surrounding plants change, becoming ever more colorful each time I exhale. The loving woman tells me I have changed myself and the outside world. I have to agree.

Some sessions are games that teach me to redirect my attention away from pain. In a cartoon winter wonderland, I shoot snowballs at happy teddy bears, who giggle when I hit them. I have made the teddy bears and myself happy.

In others programs, I swim with jellyfish. Or sunbathe on a beach in Australia. Or sit by a stream in the snowfall. You can watch a sample of these programs below.

The benefits of VR therapy continued for me after the sessions ended. When pain or panic about pain began to set in, I found it drifts away rather than latching onto me like it used to.

After a couple weeks of VR, during a visit to physical therapist, I noticed I was no longer afraid of her touching my neck and back, and actually enjoyed it.

VR reminds me of times in my life when I was fully engaged in the moment and overwhelmed by wonder or beauty. As a child swimming in the ocean, once I was surrounded by dolphins. They clicked and called to each other. I immediately forgot how cold I was and how my wet-suit was cutting off the circulation in my hands.

VR took me back to other transcendent moments of my life, like playing in an orchestra, surrounded by instruments producing layers of organized sound. Standing in front of Van Gogh’s Bedroom. A ride at Disneyland. Falling in love.

My only criticism of VR is the weight of the headset. The device is heavy and could be difficult for someone with neck or head pain to tolerate.

AppliedVR’s technology is being used in hundreds of hospitals, but it is not yet available for home use. The company hopes for a broader launch in 2021, but getting insurance coverage will be key.

"We know that living with and managing chronic pain can be a debilitating and costly challenge that is only exacerbated by the COVID crisis.  As such, we are focused on achieving our vision of delivering safe and effective VR therapeutics into the home where the need for non-opioid chronic pain treatment options is greatest,” says AppliedVR CEO Matthew Stoudt.

“We are now focused on partnering with payers to demonstrate how our chronic pain VR therapeutic improves health outcomes, reduces costs and empowers patients to lead their best lives.  This is the key to making VR a reimbursable standard of care for pain management."

In addition to pain, VR therapy is also being used to relax people going through dental procedures, chemotherapy, physical rehabilitation, phobias, anxiety and post-traumatic stress disorder (PTSD).

You cannot talk your brain out of perceiving pain, but with VR it finds other, better things to do than just focus on pain. Cognitive behavioral therapy and self-soothing techniques do that too, but VR disengaged my brain from the pain perception cycle at a much deeper level, just as pain once hijacked my thoughts and attention.

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.

How to Say Goodbye When Someone is Dying

By Dr. Lynn Webster, PNN Columnist

Once, a patient with chronic pain due to an immunodeficiency made an appointment with me to say goodbye. For years, he had received intravenous therapies for his infections, but they had all stopped working. His other doctors had already told him that nothing more could be done, and he had little time left to live. He came to let me know that he appreciated what we had done for him.

It was a surreal moment. The young man wasn’t in agony, and he seemed to be at peace with the inevitability of his death. However, I was caught unprepared. Since I wasn't sure how to respond, I simply acknowledged his words with a "thank you." We shook hands and he departed. That was the last time I saw him.

Last week, a colleague of mine sent out an email to a small number of his professional associates. He told us that he is very ill. Clearly, his implicit message was that he might never see us again. 

As I reflected on his message, I felt unprepared again. I wondered how I should respond. How would I say goodbye? Should I even broach the topic? This might be my only chance to let him know that I'd always considered him a mentor. But would he become despondent if I appeared to eulogize him? Would it be hurtful to express my sadness that we might never speak again?

I certainly didn’t want to add to his suffering. Perhaps I should ignore the gravity of his illness and focus on how I hoped he would recover soon.

But that would be dishonest. He is a physician, too, and always modeled treating his patients with empathy and compassion This was the part of his character that I felt most drawn to. He is a doctor who healed as much by listening to his patients than by any other therapy.

Asking the Right Questions

I decided to tell my friend what an important role model he has been for me, but I also had a question for him. Having treated many terminally ill patients, I have learned that most people who are dying have hopes for themselves, as well as the loved ones they are leaving behind. Therefore, I asked my physician friend whether he had any hopes he wanted to share with me. He told me he had two wishes.

“As I have been reflecting upon my personal and professional life, my first hope is that my presence really made a positive difference in people's lives. That would be my legacy. The outpouring of affection, goodwill and positive comments that I have received from ex-patients, friends, family and colleagues has made it clear that I have succeeded in that,” he said.

My friend also expressed his hope for a change in our political situation. He mentioned the anger, frustration and hopelessness he feels watching American society fall into two warring ideological camps. His hope is that the young people of today will lead us into a better future.

Opportunities for Closure

COVID-19 has forced me to think about the reality that death can catch any of us by surprise.

As I write this, we are in the midst of a pandemic that has infected more than 17 million people and taken more than 680,000 lives worldwide. Many of the COVID-19 victims died alone and didn't get a chance to say goodbye to their loved ones.

Even in ordinary times, most of us don't get to say goodbye. We often deny the reality of death as life draws to a close. "You'll feel better soon," we say, either to make ourselves feel better or to avoid the topic. Even when we are allowed to be at the bedside of someone who is dying, we often lack the courage to convey our true feelings. Honesty can be too painful during those moments.

I remember saying goodbye to my dying father. Lying with him on his bed in his home, I asked my father if he was afraid. Many of us refrain from expressing grief at moments like that, because we worry that we might make the dying person feel worse. But I could not keep from crying.

In The Four Things That Matter Most, author Ira Byock, MD, identifies the messages he considers most important to communicate to loved ones near the end of life: “Please forgive me. I forgive you. Thank you. I love you.” Expressing these sentiments can help create a sense of mutual peace and completion.

Saying goodbye does not wish death on anyone. It acknowledges the richness of the relationship that has been. That is what I felt when I told my dad I loved him, which at the time was my way of saying goodbye. It is also how I felt when I brought closure to the relationship with my friend who emailed me.

Congressman John Lewis, the noted civil rights leader, expressed hope for the future in a New York Times op-ed published shortly after his July 17th death. He said, “Though I am gone, I urge you to answer the highest calling of your heart and stand up for what you truly believe.”

Perhaps we should consider following Lewis's example. By daring to acknowledge what is happening and to say goodbye, we are bravely addressing the highest calling of our hearts. We also have the opportunity to honor all those who touched us and made us who we are.

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