‘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.

Pain Patients Give Trump Poor Ratings for Handling of Coronavirus

By Pat Anson, PNN Editor

Is it time for the coronavirus lockdown to end? Should states, schools and non-essential businesses re-open? Like everything else in a sharply divided nation, the answers to those questions are often riven with politics, misinformation and distrust.

“The president is wrong about opening up our economy! Yes, it has to be done but it's way too soon, the active cases and deaths are steadily going up and he wants to throw people out into public? It's not the right time and he is fixing to kill a lot more people,” one person told us.

“They are in too big of a hurry to re-open everything and we will all suffer for that decision. My wife is an essential worker and I worry a great deal for her,” said another.

“I'm stunned how much of this country is not taking this seriously, from the top down. I am 59 years old, and extremely ill already from chronic Lyme and many co-infections. I am terrified of this virus because I am sure I will die from it,” one patient said.

Those are some of the responses we received from over 1,700 people in the United States to our coronavirus survey. The online survey was conducted April 6-20 by Pain News Network, the International Pain Foundation and the Chronic Pain Association of Canada from April 6-20. Over 2,200 people responded worldwide, the largest survey of its kind.

‘The Country is Overreacting’

All of the respondents indicated they have chronic pain or chronic illness. Many are also elderly and have compromised immune systems, which puts them at higher risk of severe symptoms and death if they become infected with COVID-19. Like many healthcare workers, many are still unable to get simple protective gear such as face masks.

If you think that would make everyone cautious about reopening the U.S. economy, you’d be wrong.

“The country is overreacting, and this is going to destroy this country financially and make it difficult to continue to get good healthcare if providers go bankrupt,” one person told us.

“People have to go back to work, life will be worse off if people lose their jobs,” said another.

“I think for the most part it is overblown and they are inflating the numbers on purpose. We should be opening businesses on a slow but steady basis, not based on the governors’ poll numbers,” another person said.

Asked how they would rate the U.S. federal government’s response to the coronavirus, over 55% rated it poor or very poor, while only 29% said it was good or very good.

How Would You Rate the U.S. Federal Government's Response to Coronavirus?

That dim assessment by U.S. residents is in marked contrast to how residents of other English speaking countries view their governments’ response to the pandemic.

Although the number of survey respondents in Canada (391), United Kingdom (51) and Australia (26) is far less than our U.S. sample — and not as meaningful statistically — they are much more likely to have a positive rating for their own governments. Canada’s response to the pandemic was rated good or very good by 55% of Canadians.

Governments Rated "Good" or "Very Good" for Coronavirus Response

State and Local Governments Rated Better

In contrast to the federal response, chronic pain patients in the U.S. have more favorable opinions about how their state and local governments are handling the pandemic. Nearly 48% said the response was good or very good, compared to 27% who rated it poor or very poor.

How Would Rate Your State or Local Governments' Response?

“It stuns me, the level of gross incompetence and general apathy of the federal government toward average Americans. Thank God for independent governors,” one person said.

“Trump and his administration have failed this country in every possible way. They wasted months of time they should have been preparing,” said another.

“The lack of preparation is disheartening! I know that these plans were available when this administration got into office and then all that went right out the window. This lead to many unnecessary deaths while they screamed it was nothing but a Democratic hoax,” wrote another patient.

“If our federal government was on top of this, we wouldn’t have as many people dying around the country. If we had Medicare for All, then we would have an adequate supply of PPE. My state governor did a good job of early lockdown, but the local response and local people did not,” said another.

“We have all been left to die of COVID-19 because the current administration refused to step up and behave like real leaders should. And I believe that many lives could have been saved had Trump done his job in the earlier months instead of lying about it and pretending it didn't exist,” another patient wrote.

“While bad, the media has once again blown it out of proportion. Another attempt to discredit our president. This year’s flu has killed more!” said a Trump supporter.

“Thank goodness Trump cut off flights to China when he did! Good job POTUS,” said another.

Conspiracy Theories

We didn’t ask people what they thought was the source of the virus, but many offered an opinion anyway. Some believe the coronavirus was engineered in a laboratory or is part of a larger conspiracy.

“The Wuhan Chinese worldwide pandemic is germ warfare started by China for economic reasons,” one patient said.

“I personally really believe that this pandemic was deliberately done by the government of China to bring the U.S., Canada, and other strategic countries down for a very easy takeover. I also believe that the Chinese already have the vaccine for this virus,” said another.

“I fear that this outbreak is being used as a way to destroy the American Constitution and Bill of Rights and allow the government to take over every aspect of our lives. I fear that people, in their terror, will allow the government to do anything it wants,” another patient warned.

“I strongly believe and feel that there is something much more sinister going on behind the scenes that is able to be carried out freely while everyone is shut/locked away in their homes,” warned another patient. “I just really believe that this is the absolute best scenario for them to setup extensive 5G systems networks. And there's got to be something else that they are planning for a new regime of control, greed and power over the world.”

“Conspiracy type stuff is intriguing but detrimental to my health. I've stopped exposing myself to it as well as to most news,” said another patient.

“I don't know what or who to believe!” was the opinion shared by several people.

And so it goes. Thanks to everyone who participated in our survey. If you’d like to see some of the other survey findings, click here. Stay safe and be kind to one another.

Chronic Pain Patients ‘Hanging on by a Thread’ During Coronavirus Lockdown

By Pat Anson, PNN Editor

People with chronic pain and chronic illness are staying at home, practicing social distancing and wearing masks to protect themselves from the coronavirus. But after weeks of isolation, many chronically ill patients are feeling anxious and lonely, and worried about issues that healthy people are less concerned about, like losing access to medication and healthcare.

“Some medications have been unavailable or on back order. Doctors have been unavailable; everything has been unavailable. I'm hanging on by a thread,” one patient told us.  

“It’s very difficult for a single, senior person living alone. Can go days without talking or seeing anyone. I suffer with depression anyway, but this has really increased it so much. It’s scary to think that people in this group could be sick or dead for days before being found. It’s incredibly lonely,” another person said.

“It has only exacerbated my anxiety and pain to a breaking point. I don’t know how long before I completely break down mentally,” said another.

“Not only do I worry about running out of medication, but each time I have to go to the pharmacy for various medications, I am exposing myself to others which could cause me to get the virus,” a patient said.

“I am amazed at how many people just blow off social distancing and even the seriousness of coronavirus itself,” another person said. “On the other hand, I've been heartened by the amazing compassion by others for those who cannot go out, are front line workers, and for those who have the virus.” 

Those are some of the responses we received in an online survey of 2,221 people with chronic pain or chronic illness conducted by Pain News Network, the International Pain Foundation and the Chronic Pain Association of Canada from April 6-20. The vast majority of respondents live in the United States or Canada.

Over half (58%) say they are extremely or very worried about the coronavirus, while less than 5% are not worried and believe the crisis is overblown.

The vast majority report they are self-isolating at home or under quarantine (89%), practicing social distancing (98%) and wearing protective gear like masks (73%).

There’s good reason for their caution. One in four are age 65 or older, and over half (57%) have been diagnosed with a weakened immune system. Both groups are at high risk for severe symptoms and death if they become infected with COVID-19.

HOW WORRIED ARE YOU ABOUT THE CORONAVIRUS?

“Severe untreated pain has demolished my immunity; it shows on a blood test. I'm bedridden in assisted living and I am severely immuno-compromised,” one patient told us. “I am supposed to have a biopsy, they think I have uterine cancer, but I won't get treatment because I can't have pain meds. Everyone in nursing homes is vulnerable.” 

“I’ve had COVID symptoms since March 16 and still unable to get tested. My greatest fear is whether or not it compromised my immune system even more, and that I might not be able to return to work part time when this is over,” another patient said. “Since I live alone, disability is not enough to cover my payments so I will be at risk for losing my home.”

“If I get this virus, it’s a death sentence. So I stay worried, my sleep is compromised, and my pain levels are higher,” said another.

What specifically are people worried about?  It runs the gamut from from financial problems to running out of food to not knowing when the crisis will end. Their top concern is a loved one catching the virus.

What Do You Worry About?

• 71% A loved one becoming infected

• 69% Going to a hospital or doctor’s office

• 67% Catching the virus

• 64% Not knowing when this will end

• 62% Losing access to medications

• 50% Not being able to see family and friends

• 49% Not being able to see my doctor

• 49% Visiting locations where I might become infected

• 42% Mental health

• 42% Running out of food or essential supplies

• 37% Financial problems

One reason financial problems may rank low as a concern is that nearly 80 percent of respondents are retired, disabled or were no longer working. Their financial situation hasn’t changed much due to the lockdown. About 15% are still working, while only 5% have been furloughed or laid off.

‘Stuck at Home Without Pain Relief’

One of the biggest worries of respondents is having a health problem and needing to go to a hospital or doctor’s office, where they risk exposure to people who may be infected with COVID-19. As a result, over 70 percent say they have cancelled or postponed a medical appointment. About the same number are using telehealth to connect with their providers remotely.

Some patients are having problems getting their prescriptions refilled. And many healthcare services deemed non-essential, such as physical therapy, massage, chiropractic care and elective surgeries, have been cancelled.

“I am very upset to have had my shoulder surgery delayed again. I have already waited over 2 years and now this! My pain level is something terrible,” one patient told us.  

“I've lost non-pharmaceutical pain management; the essential physical therapies and procedures have been postponed. It is called ‘non-life saving’ but I've already lost my life due to disability from severe chronic immobilizing spinal nerve damage,” said another.

“Lupus medication Plaquenil is being used to treat Covid-19. A bit scary for those of us needing access to this medication daily for lupus,” said a patient, one of several with lupus who have that concern.

“I'm very worried about not being able to get ANY of my medications. Already last week, a non-pain related prescription wasn't available at my regular pharmacy. I had to go to another pharmacy to have it filled because my regular pharmacy doesn't know when they'd get the medicine again.”  

“My physician decided to stop prescribing my anxiety and muscle spasm medication now. I’m really having a terrible time functioning. My chiropractor will not see me as I had a fever at my last appointment,” a woman said. “I’m stuck at home without adequate pain relief and have a special needs daughter. None of my doctors understands my situation here and it’s beyond frustrating.”  

Testing and PPE

Another frustration is the lack of testing and shortages of protective gear such as face masks and gloves. Like many healthcare workers, nearly two-thirds (64%) of chronically ill patients say it is difficult or very difficult to get personal protective equipment, commonly known as PPE. And only about 3.5% of this highly vulnerable population has even been tested for the virus.

“Due to the fact that I have an autoimmune disorder, rheumatoid arthritis, I am trying especially hard to stay home,” said a patient. “There are no face masks, hand sanitizer or gloves available for sale in this area.”

“It is despicable to me that we do not have enough PPE and testing. We all knew there would be a pandemic, just a matter of when. From the feds down to local healthcare, that did not stockpile PPE or plan how they would do testing. It is a horrific failure of epic proportion,” another patient said.

Testing for coronavirus antibodies is less off a concern than PPE. A large majority (72%) don’t feel a need to be tested. Only about one in four are worried they may be infected (24%) and would like to take a test to confirm it (25%).

‘The Plague of Many Generations’

IS IT EASY OR DIFFICULT TO GET PPE?

Among our survey population, only 16 people say they’ve actually been diagnosed with COVID-19. It’s been a difficult, life-changing experience for those who have.

“I've been stigmatized on social media for being outside (no one was around) for having COVID-19. I've been shamed and treated like a leper,” said one coronavirus survivor.

“I had it in January before the news broke. My mom, who was very ill, got it and passed away from it. My dad and sister also had it and survived. I am on my second bout, which compared to the first is nothing,” said another survivor.

“I believe this virus has been here since December. My husband and both sons were very ill at Christmastime into January and I took ill in February,” said a woman who tested positive for COVID-19.

“It’s been absolutely terrorizing to experience such a thing! It’s difficult to understand how this could happen or where this virus came from. It’s the plague of many generations!” said another coronavirus survivor.

Tomorrow we’ll look at how people feel about the government’s handling of the coronavirus outbreak and whether now is a good time to start ending the lockdown.

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.  

PROP Linked to New Federal Opioid Study

By Pat Anson, PNN Editor

A small but influential group of anti-opioid activists continues to play an outsized role in guiding federal policy on the use of opioid pain medication.

The latest example is a new report by the Agency for Healthcare Research and Quality (AHRQ) on the effectiveness of opioids in treating chronic pain. In a lengthy review of over 150 clinical studies, AHRQ researchers concluded that opioids were no more effective in treating pain than nonopioid medication, and that long-term use of opioids increases the risk of abuse, addiction and overdose, especially at high doses.

The findings are essentially the same as those in a draft report released by the AHRQ last year. What’s different is that the agency finally disclosed the authors of the report and the outside advisors they consulted with. They include a cabal of academic researchers and physicians with biased views about opioids that federal agencies keep bringing in as consultants.   

The AHRQ’s report confirms what PNN reported in November. The study was led by Dr. Roger Chou, a primary care physician who heads the Pacific Northwest Evidence-based Practice Center at Oregon Health & Science University.

Most public health researchers keep a low profile to avoid accusations of bias, but Chou has been a vocal critic of opioid prescribing for years. In a 2019 podcast, for example, Chou said the benefits of opioids were “clinically insignificant” and the medications were often quite harmful.

“The impact of prescription opioids in terms of mortality and substance use disorder and all the other things that come along with it have really been quite staggering,” he said.

Chou also served on a state task force last year that supported a rigid opioid tapering policy. If adopted, the policy would have forced thousands of Oregon’s Medicaid patients off opioids.

DR. ROGER CHOU

“I don’t think there’s anything compassionate about leaving people on drugs that could potentially harm them,” Chou said.

Collaboration with PROP

Chou has collaborated on several occasions with members of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group that seeks to reduce the use of opioid medication. PROP has never disclosed its donors or funding.

Last year Chou co-authored an op/ed with PROP President Dr. Jane Ballantyne and PROP board member Dr. Anna Lembke that encourages doctors to consider tapering “every patient receiving long term opioid therapy.”

In 2011, Chou co-authored another op/ed with PROP founder Dr. Andrew Kolodny and PROP vice-president Dr. Michael Von Korff. 

The article was prescient because it called for a major overhaul of opioid guidelines that were then primarily developed by pain management specialist organizations.

“Guidelines for long-term opioid therapy should not be developed by the field of pain medicine alone.”

— Kolodny, Chou, et al 2011

“Guidelines for long-term opioid therapy should not be developed by the field of pain medicine alone. Rather, experts from general medicine, addiction medicine, and pain medicine should jointly reconsider how to increase the margin of safety,” they said.

That major overhaul came in 2016, when the Centers for Disease Control and Prevention released its controversial opioid guideline, which soon displaced all of the other guidelines. Chou was one of the co-authors of the CDC guideline – so it’s not altogether surprising that the AHRQ study reaffirms many of the CDC’s conclusions.

“Findings support the recommendation in the 2016 CDC guideline that opioids are not first-line therapy and to preferentially use nonopioid alternatives,” Chou and his colleagues wrote.

In preparing the AHRQ study, researchers sought input from a dozen outside experts, who served as technical experts and peer reviewers. Three of the 12 are PROP board members: Drs. Mark Sullivan and David Tauben were technical experts, and PROP vice-president Dr. Gary Franklin was a peer reviewer. Sullivan, Tauben and Franklin are all professors at the University of Washington, and played prominent roles in the development of Washington state’s opioid prescribing regulations, which are some of the toughest in the nation.

Another peer reviewer was Dr. Erin Krebs, an associate professor at the University of Minnesota Medical School. Krebs was the lead author of a controversial 2018 study that found non-opioid pain relievers worked better than opioids in treating osteoarthritis pain. While some critics said the study was poorly designed and amounted to junk science, it drew praise from Chou.

"The fact that opioids did worse is really pretty astounding," Chou told the Chicago Tribune. "It calls into question our beliefs about the benefits of opioids." 

In addition to her work as a researcher, Krebs also appeared in a lecture series on opioid prescribing funded by the Steve Rummler Hope Foundation, which lobbies against the use of opioids. The non-profit foundation is the fiscal sponsor of PROP, and Kolodny and Ballantyne both serve on its medical advisory committee.

If these intertwining connections are making your head spin, there’s more.

Core Expert Group

Ballantyne, Franklin and Krebs served on the “Core Expert Group” that advised the CDC when it drafted its opioid guideline, and Tauben was on the CDC’s peer review panel. Kolodny and yet another PROP board member, Dr. David Juurlink, were part of a “Stakeholder Review Group” that provided input to the CDC.

When PNN filed a request under the Freedom of Information Act (FOIA) to see what kind of advice the Core Expert Group gave to the CDC, we were stiff-armed by the agency. The CDC sent us nearly 1,500 pages of documents, but most were so heavily redacted they were completely blank.    

Even financial conflict of interest statements were scrubbed of information, with the CDC citing “personal privacy” and “deliberative process privilege” as reasons not to provide them in full.

At least two unidentified members of the Core Expert Group worked for or consulted with organizations with an interest in opioids or other controlled substances. One of those individuals also provided “expert opinion or testimony,” which has become a lucrative sideline for some PROP members.

Critics wonder why federal health agencies keep bringing in consultants with obvious biases and conflicts of interest.

“The AHRQ review presents itself as an objective scientific analysis of the medical literature. In my opinion, the document is arguably contaminated with a political agenda,” says Dr. Dan Laird, a physician attorney in Las Vegas. “Some of those involved in the review could be perceived by the chronic pain community as having strong anti-opioid political views and biased ideas about the meaning and treatment of chronic pain.

“Most importantly, there is no input whatsoever from the chronic pain community in the review. There are certainly chronic pain patients with academic credentials that would qualify them to conduct a literature review. Several highly regarded academic physicians and scientists, known for opioid moderatism, are conspicuously absent as investigators, peer reviewers, or technical experts; these include pain medicine academicians such as Drs. Michael Schatman, Sean Mackey, Stefan Kertesz, and Vanila Singh.”

AHRQ Conflict Policy

If a peer reviewer or technical expert has a financial or professional conflict of interest, that does not automatically disqualify them in the eyes of the AHRQ, which will retain them “because of their unique clinical or content expertise.”  

It’s also been a long-standing AHRQ policy not to disclose the names of advisors or authors until its reports are finalized.

“This policy is aimed at helping the authors maintain their independence by not being subject to lobbying by industry reps or others with conflicts of interest, either financial or intellectual,” AHRQ spokesman Bruce Seeman explained in an email.

But others wonder if the policy damages the agency’s reputation and the credibility of its research, by not giving the public a chance to review and comment on possible biases before a final report is released. The American Medical Association urged the AHRQ to change its policy last year.

“We would suggest that AHRQ publish the list of all those involved in any aspect of the report during the comment period to help remove any perception of potential conflict,” Dr. James Madara, the AMA’s Executive Director and CEO, wrote in a letter to the agency last year.

CDC Guideline Update

It might be tempting to dismiss the work of an obscure federal agency that produces wonky reports that are mostly read by public health researchers and government bureaucrats. That would be a mistake. It was a 2014 AHRQ report on opioids – co-authored by Chou – that played a foundational role in the CDC guideline.

Although the CDC guideline is voluntary and only intended for primary care physicians treating chronic pain, it has become mandatory policy for doctors in all specialties, as well as other federal agencies, dozens of states, insurers, pharmacy chains and law enforcement agencies. In effect, the guideline has delivered on the goals sought by Kolodny, Von Korff and Chou in 2011. The standard of care in pain management is no longer determined by pain specialists.

Chou and his colleagues hope the new AHRQ report will have a similar impact, not just in government, but throughout the healthcare system.

“The information in this report is intended to help healthcare decision makers — patients and clinicians, health system leaders, and policymakers, among others — make well-informed decisions and thereby improve the quality of healthcare services,” they said.

In addition to its report on opioid treatments for chronic pain, AHRQ has also finalized studies on the effectiveness of Nonopioid Medications for Chronic Pain and Nonpharmacologic Treatments for Chronic Pain, such as acupuncture and meditation.

All three reports will be utilized by the CDC as it prepares an update and expansion of its opioid guideline, which is expected in late 2021.  That effort is being overseen by the Board of Scientific Counselors at the CDC’s Center for Injury Prevention & Control.  Roger Chou happens to be one of its members.  

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.

What Is CDC Trying to Hide?

By Pat Anson, PNN Editor

The Centers for Disease Control and Prevention made little attempt at openness and transparency when it released a draft version of its controversial opioid guideline in September 2015.

No public hearings were held. Only a select audience was invited to a secretive online webinar in which CDC officials hurriedly outlined the guideline and then refused to answer any questions about it. The guideline wasn’t posted on the CDC website and no copies were made available.

Even more puzzling is that the CDC refused to disclose who wrote the guideline or served on advisory panels such as the so-called “Core Expert Group” that played a key role in drafting the recommendations. Their names leaked out anyway.

What was the agency trying to hide?

Those issues were important five years ago, just as they are today.  While the opioid guideline was only intended as a recommendation for primary care physicians treating chronic pain, it has effectively become the law of the land for all doctors in every specialty – and adopted as policy by states, insurers, pharmacy chains and law enforcement agencies.

As a result, in the name of preventing addiction, millions of pain patients have been cut off from opioids and gone without adequate pain treatment, with an untold number of suffering souls committing suicide.

Only when threatened with a lawsuit and a congressional investigation of the guideline process did the CDC back down, delaying the release of the guideline for a few months. Hearings were held, public comments were accepted, and CDC revealed the names of its experts and outside advisors, including some who had strong biases against opioids.

Five were board members of Physicians for Responsible Opioid Prescribing (PROP), a small but influential advocacy group founded by Dr. Andrew Kolodny, a psychiatrist who was then-medical director of Phoenix House, an addiction treatment chain. PROP President Jane Ballantyne, MD, and Vice-President Gary Franklin, MD, were members of the Core Expert Group, while board member David Tauben, MD, served on the CDC’s peer review panel. PROP member David Juurlink, MD, and Kolodny himself were part of a “Stakeholder Review Group” that provided input to the CDC.

Concerned about the apparent one-sided approach to the guideline, a bipartisan group of congressmen on the House Oversight and Government Reform Committee wrote a letter to then-CDC director Thomas Frieden, a longtime associate of Kolodny.

“We expect CDC’s guidelines drafting process to seek an appropriate balance between the risk of addiction and the need to address chronic pain,” wrote Chairman Jason Chaffetz (R-Utah). “The CDC has utilized a ‘Core Expert Group’ in the drafting and development of opioid prescribing guidelines, raising questions as to whether CDC is complying with FACA (Federal Advisory Committee Act).”

Chaffetz and his colleagues asked Frieden to supply documents and information about the guideline process “as soon as possible.”

‘Some Information Was Withheld’

We were curious about Frieden’s response and filed a Freedom of Information Act (FOIA) request with the CDC last year, asking for “copies of all documents, emails, memos and other communications” that the agency sent in response to Chaffetz’s letter.

The CDC’s reply, received a few weeks ago, is just as puzzling and secretive as the agency’s actions in 2015.  Nearly 1,500 pages of documents provided to PNN were heavily redacted or scrubbed of all information. As a result, over 1,200 pages were completely blank.

“We located 1,449 pages of responsive records and two Excel workbooks (108 pages released in full; 103 pages disclosed in part; 1,238 pages withheld in full). After a careful review of these pages, some information was withheld from release,” Roger Andoh, who heads the CDC’s FOIA Office, wrote in a letter to PNN.

Andoh cited two FOIA exemptions to justify withholding the information. The first exemption protects material under a broad declaration of “deliberative process privilege.” Material that’s in draft form, including a reviewer’s comments and recommendations, can be withheld by the government because they are “predecisional and deliberative.”

The second FOIA exemption cited by Andoh protects information that is private because releasing it would be “a clearly unwarranted invasion of personal privacy.”  

The privacy exemption was applied often to documents from a June 23, 2015 meeting of the Core Expert Group. We can see from the agenda that it was an important meeting, with clinical evidence about opioids reviewed in the morning, followed by a lengthy panel discussion in the afternoon. But we don’t know who said what because the minutes from that meeting have been deleted.

Whenever you see the notations “(b)(5)” or “(b)(6)” appear means that some information was withheld.

SOURCE: cdc foia office

The privacy exemption was also applied to the financial conflict of interest statements filed by all 17 members of the Core Expert Group (CEG). Their names and signatures were redacted, so we have no idea who they were or what conflicts they declared.

One CEG member checked a box indicating they did consulting work for “a commercial entity or other organization with an interest related to controlled substances.” Opioids are a controlled substance and so is Suboxone, an addiction treatment drug. It would be important to know who that person was, but their name was redacted, along with name of the organization they worked for.

The same individual also checked a box indicating they “provided an expert opinion or testimony.” But because the information was redacted, we don’t know if the person was paid for their testimony and, if so, who they were paid by and what the amount was.

Information was also withheld about other CEG members who were given grants, honoraria, and reimbursement for travel and lodging by organizations with an interest in controlled substances. One CEG member was actually employed by such an organization, but we don’t know who that was or who they worked for..

In short, several members of the Core Expert Group had a financial conflict of interest and disclosed it to the CDC, but the agency has decided – five years later -- that information should not be made public.

(Update: In 2022 testimony in West Virginia, Kolodny testified that he started working on opioid litigation in 2012 with Linda Singer, then with the law firm of Cohen Milstein, and that he was eventually paid a million dollars or more for his work as an expert witness and consultant. It’s unknown if Kolodny disclosed that relationship to the CDC.)

‘There Was a Cover-Up Here’

We asked three advocates in the pain community to review the documents CDC provided to PNN. All three were puzzled why so much information was withheld.

“I think what they sent is an embarrassment. There is no reasonable or rational explanation to redact any part of a suggested guideline process especially since the CDC admits the guidelines were misapplied and misinterpreted,” said Julie Killingworth, a disabled activist. “I believe the ridiculously heavy number of redactions is a clear admission of guilt. The CDC has committed at least one or multiple federal crimes and the House Oversight Committee needs to closely revisit their December 18, 2015 letter of concern to Dr. Tom Frieden.”

“There was indeed a cover-up here, grounded primarily on the escape clauses in the FOIA enabling legislation which exempts the government from revealing its internal processes or consultations to the public,” said Richard “Red” Lawhern, PhD, who heads the Alliance for the Treatment of Intractable Pain. “Unfortunately, this broad exception to full public disclosure permits agencies to hide their own biases, failures of transparency, or arbitrary decisions.    

“Masking the identities of individuals who contribute to policy can also make it practically impossible to assess bias, conflict of interest, or outright misrepresentation. The extensive redacting of documents raises concern that the reviewing office has engaged in a broad cover-up by masking the identities and professional or personal affiliations of those who contributed to the CDC Guidelines." 

“It could well be that there would be nothing surprising or unseemly in the redacted information. But if you don't want people to think you are trying to hide something nefarious, then the old saying that sunlight is the best disinfectant certainly would seem to apply here,” said Bob Twillman, PhD, a former executive director of the Academy of Integrative Pain Management, who was also a member of the CDC’s Stakeholder Review Group. 

“It's mystifying and sad to me that CDC will not reveal who was involved in the deliberations that led to the issuance of its opioid prescribing guideline, even though they have publicly revealed much of this information elsewhere.” 

Twillman points out that the identities of the Core Expert Group, as well as other advisors and contributors to the guideline, were all published in a JAMA article and by the CDC itself when the final guideline was released in 2016.  

Redacting their names and conflicts of interest, as well as minutes and notes from their deliberations, is likely to fuel long-standing suspicion in the pain community that the guideline process was tainted by bias and that much of the clinical evidence was cherry-picked.

“What's worse for me is the refusal to help people understand the deliberative process that went into drafting the recommendations in the guideline,” says Twillman. “An interesting issue that is probably covered by the redacted material is the decision to reject any evidence except RCTs (randomized controlled trials) when evaluating benefits of opioids, but to accept weaker types of evidence when evaluating harms of opioids. Why did the group decide this was acceptable, and not insist on a level playing field for evidence regarding these two questions?” 

The CDC recently announced plans to update and expand its opioid guideline, most likely to include the treatment of short-term, acute pain. Whether the agency will use more transparency and openness in that process remains to be seen. The updated guideline is expected in 2021.

A Pained Life: A Tortured Wait

By Carol Levy, PNN Columnist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

9 Ways to Stay Healthy During Coronavirus Lockdown

By Pat Anson, PNN Editor

You’re tired of binging on Netflix. You’ve run out of closets to organize. The gym is closed indefinitely. The walls seem to be closing in. Depression and despair -- what Churchill called his “black dog” – are lurking in the shadows.

How is someone supposed to stay physically and mentally healthy during weeks – and probably months – of home isolation?

Whether you’re healthy, disabled or living with chronic illness, maintaining some level of physical fitness is important for overall health and avoiding the depression, anxiety and insomnia that inactivity can bring. It can also help reduce your pain levels.

With no further ado, here are 9 ways to make self-isolation a little easier to bear.

#1 Light Fitness

One basic step you can take is to adopt a “light fitness” routine.     

“If the sky is clear and the sun is shining, go for a walk during the day. Try to go outside in the morning, every day, at the same time, for a period of 30 minutes or so,” says Mariana Figueiro, PhD, a leading expert on the health benefits of light and director of the Lighting Research Center at Rensselaer Polytechnic Institute.

Figueiro believes that maintaining a 24-hour light–dark schedule increases alertness, mood and vitality during the day, while helping people sleep at night. It may even have a protective effect against coronavirus by boosting your immune system.

If you must stay indoors, Figueiro suggests increasing the amount of light by a factor of four (x4) during the day. That means if you have one lamp in your living room, bedroom or wherever you spend the most time during the day, add three more lamps for a total of four.

In the evening, dim those lights. And avoid using a computer, smartphone or TV right before bedtime. The glow from an electronic screen can make it harder for you to fall asleep.

“A robust pattern of light during the day and darkness at night is important for our health and well-being,” Figueiro advises. “Open the window curtains or shades. Seek light during the day, especially during the morning. Go out for a walk during lunchtime. Dim the lights in the evening, mimicking sunset.”

Opening curtains and blinds to let in sunlight may also help kill the coronavirus, according to scientists at the University of California, Davis.

“In a study simulating sunlight on influenza virus aerosols, virus half-life was significantly reduced from 31.6 min in the dark control group to approximately 2.4 min in simulated sunlight,” researchers said.

“Further research is needed to understand the impact of natural light on SARS-CoV-2 indoors; however, in the interim, daylight exists as a free, widely available resource to building occupants with little downside to its use and many documented positive human health benefits.”

#2 Geezer-Fast Yoga

One way to stay in shape during the coronavirus lockdown is to adopt a home exercise routine. 84-year old Denny Hatch began practicing yoga several years ago at the urging of his wife, who saw him struggling just to bend over and put on socks.

Weekly hour-long yoga sessions helped Hatch feel limber and pain-free again. But he thought yoga took too much time.

“Yoga is slow. Slow yoga bores the hell out of me and I wanted something faster. So I cut the practice in half and speeded up the movements,” Hatch says.

For 26 minutes every morning, Hatch goes through a series of low-impact yoga moves in his living room. Hatch recently shot and narrated a free video that he calls “Geezer Fast-Yoga” to help others learn his techniques.

“I decided to share this shortened version in the hopes other senior men might find it useful —especially in this time when so many of us are forced to remain in home detention,” Hatch says. “I invite you to have a look. Maybe you’ll find it helpful.”

Hatch notes that he is not a licensed yoga instructor. If you feel any kind of pain from any of the moves in his routine, he urges you to stop immediately and consult a physician. 

#3 ‘Focus on What’s Healthy’

If you want to get out of the house and exercise, you could take the advice of Becky Curtis: Go for a long hike.

Before you say, “I can barely get off the couch,” listen up.

In 2005, Curtis was partially paralyzed after a car accident nearly killed her. Recovery was slow. Curtis was in so much pain and so isolated that she felt “claustrophobic in my own body.” But she focused on finding positive things to do – like learning how to walk again -- and made realistic goals and behavioral changes to get her mind off the pain.

Three years after her accident, Curtis became a pioneer in pain management counseling by launching Take Courage Coaching. In weekly sessions by phone, Curtis shares with clients the techniques that she learned to manage pain and end her isolation and self-doubt.

“Maybe some of the things that I’ve learned can be helpful to you during this time,” Curtis says. “I focus on what’s healthy, what’s whole, what’s right and what’s good. And in doing that, it helps my pain.”

Curtis is working on a series of free videos to help people get through the stress and fear of COVID-19. In her first video, she’ll take you on a two-mile hike through the mountains near her home in Sandy, Utah.

#4 Laugh at Jack Black’s Dance Routine

If exercise is not your thing, laughing is a good alternative. It gets the heart beating and the lungs aired out.

Like the rest of us, comedian and actor Jack Black has been staying home during the coronavirus lockdown. He also found a way to keep us entertained by donning a cowboy hat, cowboy boots and, thankfully, a pair of shorts while performing a “Quarantine Dance” in a short video that’s been seen millions of times on TikTok and Instagram.

#5 Watch Some Good News

Ready for some good news? Aren’t we all?

Actor John Krasinski, who starred in The Office and Tom Clancy’s Jack Ryan, has a new talk show on YouTube in which he shares good news from around the world.

“Without question, we are all going through an incredibly trying time. But through all the anxiety, all the confusion, all the isolation and all the Tiger King, somehow the human spirit still finds a way to breakthrough and blow us all away,” Krasinski says.

Topping the list of good news in Krasinski’s first show is the heroism of healthcare workers, delivery drivers and others who keep the world functioning while the rest of us take a break from it.

#6 Make a Face Mask

Some communities, such as Los Angeles, now require people to wear a face mask or facial covering when they visit a grocery store and other essential businesses that have stayed open.

Don’t have a face mask? U.S. Surgeon General Dr. Jerome Adams demonstrates how you can easily turn an old scarf or t-shirt into a facial covering that you can wear while heading from store to store in search of a real mask. 

#7 Howl at the Moon

To break up the monotony of being at home, some people are going outside in the early evening to chat with neighbors (at a safe distance), bang pots and pans, sing, and cheer on healthcare workers.

There’s even a Facebook group dedicated to howling at the moon — every night at 8 pm in whatever time zone you live in. The group has over half a million members!

While some of the howling videos are amusing, don’t expect a lot of laughs. The group has evolved into a memorial and gathering place for people who have lost loved ones or are dealing with a severe illness.

“Lost my dad to the flu and pneumonia on March 19, 2020 and lost my brother to cancer on March 22, 2020. I will be howling for them,” one member posted.

#8 Try a Meditation App

There’s an app for everything, including several that can help you relax, feel happier, fall asleep easier and reduce anxiety. I just downloaded one called Box Breathing that specializes in meditation and guided breathing exercises you can do at home.

“Find a comfortable position. You can either be seated or lying down. Start by feeling your body sinking into the support beneath you,” instructs Lynne Goldberg during a two-minute meditation program for self-care during the coronavirus outbreak.

Box Breathing has free meditations for things like boredom and financial anxiety. There’s also a paid version that gives you access to hundreds of guided meditations, including some that focus on chronic pain, migraines, high blood pressure and healing your body

Calm is a similar app that has a 7-day free trial, followed by a paid subscription.

#9 Take Our Survey

Finally, be sure to take our survey on the coronavirus.

PNN has partnered with the International Pain Foundation and the Chronic Pain Association of Canada to see how the coronavirus pandemic is affecting people with chronic pain and chronic illness — who are most at risk from COVID-19.

The survey only takes a few minutes and will be closed soon. Click here to get started.  

What are you doing to pass the time and stay healthy that might be helpful to other people who are self-isolating? Let us know in the comment section. And stay safe out there.

I’m Lonely. Are You Lonely Too?

By Ann Marie Gaudon, PNN Columnist

We are born for connection and being socially separated is bad for our physical and emotional health. From altering our immune systems to creating more inflammation to increasing the risk of heart disease and stroke, the health consequences of loneliness are significant.

Being a chronic pain patient can put you at even greater risk of being lonely. On the one hand, we know that social isolation is unhealthy, but on the other hand, we don’t have a choice as we must practice social distancing and self-isolation to protect ourselves and others from the coronavirus.

I’m lonely, you’re lonely – now what?

Don’t Do This

Do not attempt to run from your loneliness by zoning out for hours on end with Netflix or video games, consuming too much alcohol or other substances, or over-eating.  Trying to escape loneliness that way might give you some reprieve in the short-term, but those strategies will suck the life out of you in the long-term.

Trying to avoid or suppress feelings actually has a rebound effect in that they become stronger and more invasive in our lives. Avoidance is not a benign strategy and can have catastrophic results.

Do This Instead

Pay attention on purpose. Slow down, notice and name it. For example, “I am feeling lonely. It feels heavy and sluggish in my heart.”

Can you let this feeling be there just as it is, without judging or evaluating it? Without reacting to it? Can you just slow down and let your body feel what it is feeling? Can you let go of the urge to do anything at all with this feeling of loneliness? This is a normal response to an abnormal situation and your body is wise to this, so let it be.

Make an intention. Ask yourself, “What will I do with this feeling of loneliness now? My mind sees this as something that makes me weaker, unlovable and sad. But I choose not to buy into this. I accept that this loneliness is mine. What will I do with it now that it is here?”

The way out of this suffering is to behave your way out of it. Changing your behaviour will change the way people interact with you and will also change the way you interact with yourself. Make an intention to change your behaviour while holding the loneliness lightly, as you might hold a butterfly on your hand.

Expand your experience. You’re not going to shrink away from your experience of loneliness, but rather learn from it. We hurt where we care. Loneliness tells us that we care deeply about relationships. If we didn’t, we wouldn’t feel anything at all.

You will learn that your experience cannot bring you to your knees or ruin your life. You will learn that you can go through hell on earth and still treat yourself in a non-judgmental, non-reactive way. You will learn to wrap yourself in the warmth of self-kindness – even in moments of loneliness – and expand out into life to be part of this world.

Stay Connected

If you are reading this, you already have at least one technology that you will use to move forward with a new meaning. How you take control over what you do have control over – your behaviour – will be up to you, so choose something that you value.

People all over this planet are getting creative with ways to connect with each other. Stay connected to those you love. Use your phone or software such as Skype or Zoom. Use whatever floats your boat, just remain consistently connected.

There’s a virtual world out there for everyone. You can access therapy, support groups, entertainment of all kinds, exercise of all kinds, and even stream from your local library. How about taking that online course right now that you’ve been putting off? The great thing is that you can connect with a resource anywhere in the world.

The take-away message is this: Feel what you feel and make an intention to change your behaviour. Expand your world even if has to be online right now. Talk with people, laugh with people and cry with people.

The point is to emotionally connect during these especially lonely times. Texting, emailing, speaking, video-conferencing – the sky's the limit. Change your behaviour and change your life. Self-isolation need never mean emotional isolation.

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.

Experts Say IBD Patients Not at Higher Risk From Coronavirus

By Pat Anson, PNN Editor

Patients with Crohn's disease, ulcerative colitis and other inflammatory bowel diseases (IBD) are not at greater risk from the coronavirus and should continue their regular therapies, according to new guidance by the American Gastroenterological Association (AGA) published in the journal Gastroenterology.

IBD is an immune system disorder that causes abdominal pain, diarrhea and weight loss. Symptoms and progression of the disease can be controlled by medications such as prednisone that suppress the immune system, which has led to concern that patients taking the drugs may be more susceptible to coronavirus infections.

Some IBD patients also need to visit medical facilities for infusions and other procedures, which may increase their risk of exposure to the SARS-CoV-2 virus.

“Despite the potential for increased exposure to SARS-CoV-2, the limited available data and expert opinion suggest that patients with IBD do not appear to have a baseline increased risk of infection with SARS-CoV-2 or development of COVID-19,” wrote lead author David Rubin, MD, Co-Director of the Digestive Diseases Center at University of Chicago Medicine.  

“It is unclear whether inflammation of the bowel per se is a risk for infection with SARS-CoV-2, but it is sensible that patients with IBD should maintain remission in order to reduce the risk of relapse and need for more intense medical therapy or hospitalization.”

Rubin and his co-authors say there is limited information on the severity of coronavirus symptoms in IBD patients, although one study in China found they were “more likely to be hospitalized.” While COVID-19 is primarily a respiratory illness, the virus can cause digestive problems and is detected in stool samples.

The experts recommend that IBD patients who do not have coronavirus symptoms continue their current treatments to avoid relapsing.

“Aside from the obvious negative consequences of a relapse, relapsing IBD will strain available medical resources, may require steroid therapy or necessitate hospitalization, outcomes that are all much worse than the known risks of existing IBD therapies,” Rubin wrote. “Similar to the recommendations to the general population, patients with IBD should practice strict social distancing, work from home, have meticulous hand hygiene, and separate themselves from known infected individuals.”

Infusion centers should have a protocol to pre-screen IBD patients for fever and other coronavirus symptoms, and providers and patients should wear masks and gloves.

For patients who test positive for the coronavirus or develop symptoms, the experts recommend lower doses of prednisone and a temporary halt to biological therapies and immune suppressing drugs such as thiopurines, methotrexate, and tofacitinib.   

“For the patient with COVID-19, adjustment of the medical therapy for IBD is appropriate, based on the understanding of the immune activity of the therapy and whether that therapy may worsen outcomes with COVID-19,” Rubin wrote. “For hospitalized patients with severe COVID-19 and risks of poor outcomes, IBD therapy likely will take a back seat, but choice of therapies for COVID-19 should take into account the co-existing IBD, if feasible.”

Over 3 million people in the United States have IBD. The AGA has developed a flow chart for providers treating IBD during the COVID-19 outbreak and a reference chart for IBD patients.

Now It’s Our Turn

By Dr. Lynn Webster, PNN Columnist

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

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

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

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

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

Other Pandemics

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

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

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

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

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

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

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

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

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

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

What Lies Ahead

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

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

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

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

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

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

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

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

Frequent Cannabis Use Linked to High Pain Levels

By Pat Anson, PNN Editor

People who use medical marijuana multiple times a day are more likely to have high levels of chronic pain, but that may be a reflection of other health problems, according to a new study.

The study, recently published in the International Journal of Drug Policy, is based on a survey of 295 medical marijuana dispensary patients in Los Angeles in 2013. Participants were asked about their pain levels, how often they used marijuana, and how their current health status compared to a year earlier.

Those who reported high levels of pain were more likely to use cannabis three or more times a day, but researchers say they could also be using cannabis for conditions such as nausea, anxiety and insomnia.

"It may not be the pain that patients are trying to address," said lead author Alexis Cooke, a postdoctoral scholar in psychiatry at the University of California, San Francisco. "Having high chronic pain is related to poorer health, so it may be that people who are using marijuana more often already had worse health to begin with.

"Chronic pain is also associated with depression and anxiety. Marijuana may help with these problems for some people, even if it doesn't help with the pain.”

Among those surveyed, 31% reported high pain levels, 24% had moderate pain, and 44% were in the low-pain category.

The percentage of participants who used marijuana daily did not differ by pain category. But about 60% of those who reported high pain used cannabis three or more times a day, compared to 51% of those with moderate pain and 39% of those in the low-pain group.

The findings showed no association between daily marijuana use and changes in health status for those with low levels of pain. But daily marijuana use was linked to worsening health for people with high pain levels.

"It's not clear if marijuana is helping or not," said co-author Bridget Freisthler, a professor of social work at The Ohio State University. "The benefits aren't as clear-cut as some people assume."

"It shows how little we know about marijuana as medicine, how people are using it, the dosages they are receiving and its long-term effects."

While the findings are mixed, the authors concluded that for cannabis, “the best available evidence suggests a possible benefit for the treatment of chronic pain.”

It all may boil down to how much tetrahydrocannabinol (THC) -- the psychoactive ingredient in marijuana – is in the cannabis people are consuming.

A recent survey of nearly 3,000 cannabis users by researchers at the University of New Mexico found that those who used whole cannabis flowers or buds rich in THC reduced their pain levels an average of three points on a 0 to 10 pain score. Surprisingly, those who ingested cannabidiol (CBD) did not experience similar pain relief.

An earlier study by the same researchers found that cannabis also provides relief from insomnia, seizures, depression, anxiety and fatigue. That study also found that THC was more important than CBD in generating therapeutic benefits.