Evidence Used to Justify CDC Opioid Guideline ‘No Longer Present’

By Pat Anson, PNN Editor

Anti-opioid activists and public health officials have long argued that opioid “overprescribing” fueled the overdose crisis in the United States, causing drug deaths to surge to record levels.

“This rise is directly correlated with increased prescribing for chronic pain,” Dr. Jane Ballantyne, then-president of Physicians for Responsible Opioid Prescribing (PROP), wrote in a 2015 letter to the National Institutes of Health.

That claim was repeated the following year by the CDC when the agency released its controversial opioid guideline. “Overprescribing opioids – largely for chronic pain – is a key driver of America’s drug overdose epidemic,” then-CDC director Dr. Thomas Frieden said in a news release.   

But a new analysis debunks the overprescribing myth, finding the “direct correlations” cited by Frieden, Ballantyne and others are no longer valid, if they ever were.

In a study recently published in Frontiers of Pain Research, independent researchers Larry Aubry and B. Thomas Carr examined opioid prescribing trends and overdose deaths from 2010 to 2019, using the same data sources that the CDC guideline is based on.

“The direct correlations used to justify the CDC guideline… are no longer present,” they reported.

Aubry and Carr found that opioid prescribing, when measured in morphine milligram equivalents (MME), was in steep decline years before the guideline was even released. That trend accelerated even further when regulators, insurers and healthcare providers started following the CDC’s recommendations.

If the overprescribing theory were true, you would expect drug deaths to go down as opioid sales did. But in subsequent years, overdoses linked to prescription opioids stayed flat and drug deaths surged even higher. In research terms, that is known as a “negative correlation” -- a trend not supported by facts.

Looking at data from all 50 states, Aubry and Carr found “significant negative correlation” in 38 states between overdoses and prescription opioids, and a positive correlation in only 2 states. In 10 states, there appeared to be no relationship at all. That calls into question ones of the primary recommendations of the CDC guideline; that daily opioid doses not exceed 90 MME.

“This recommendation is not supported by the available data. Regression analyses of (total opioid deaths, opioid overdose deaths, opioid treatment admissions, and prescription opioid sales) among patients receiving doses of at least 90 MME/day show significant negative relationships, indicating that lower (prescription opioid sales) in this high-dosage cohort do not correspond to lower death rates,” Aubry and Carr reported.

The CDC estimates that over 107,000 people died of overdoses in 2021, well above the 63,600 drug deaths reported in 2016, the year the guideline was released.

Negative Correlation Between Overdoses and Opioid Prescribing

sOURCE: FRONTIERS OF PAIN RESEARCH

Patient Outcomes Not Being Monitored

Even more concerning is that the CDC does not appear to be tracking the impact of its 2016 guideline on pain patients, even as it prepares a long-delayed update to the guideline. As PNN has reported, the CDC ignored warnings from its own consultants that the agency “should consider conducting more research” on patients, many of whom were abruptly tapered or abandoned by their doctors after the guideline’s release.

“Reasonable judgment would dictate tracking and reporting of chronic pain patient outcomes (deaths, suicides, returns in benefits, reported pain, function, etc.) for individuals since the guideline or the guideline update. However, there appears to be no publicly available evidence that a monitoring process is required or is planned to measure and confirm outcomes,” Aubry and Carr wrote.

PROP is not following the data either. In a recent debate, PROP board member Adriane Fugh-Berman claimed that pain patients addicted to prescription opioids were still fueling the overdose epidemic, even though illicit fentanyl and other street drugs are linked to the vast majority of deaths.

“Those patients went to the street. They got addicted to heroin. The reason those deaths went up is because the illicit supply of opioids has become laced with fentanyl and has become highly dangerous,” Fugh-Berman said, without citing any evidence. “It’s not that prescription opioids have nothing to do with it.  Many patients started on prescription opioids ended up on the streets looking for heroin. They’re dying because the illicit opioid products have become extremely dangerous. That’s what’s killing people.”

Fugh-Berman is not an unbiased observer. She and at least five other PROP board members have testified as paid expert witnesses in opioid litigation cases, making as much as $850 an hour for their testimony blaming drug makers for the opioid crisis.

A recent analysis of overdose deaths in 2020 found that prescription opioids ranked well behind illicit fentanyl, alcohol, cocaine, methamphetamine and heroin as the leading cause of drug deaths.   

At least one critic of opioid prescribing feels it’s time to change the focus on why so many Americans are overdosing. Beth Macy, who wrote the best-selling book “Dopesick,” says drug use has changed. 

“At this point, too much attention is focused on stemming the oversupply of prescription opioids. We now have a generation of drug users that started with heroin and fentanyl.”

— Beth Macy, author of "Dopesick"

“At this point, too much attention is focused on stemming the oversupply of prescription opioids,” Macy writes in her new book, ‘Raising Lazarus.’ “We now have a generation of drug users that started with heroin and fentanyl.”

As for the CDC, a spokesperson tells PNN the agency won’t publish its guideline revision until late this year, nearly seven years after the original guideline was released. 

“CDC is currently in the process of revising the draft update to the 2016 Guideline based on comments received during the public comment period and peer review. We anticipate the final Guideline will be released later this year,” the spokesperson said.

Why I Still Take Precautions Against Covid

By Victoria Reed, PNN Columnist

We are three years into the Covid-19 pandemic, and while life has still not returned to normal, it’s understandable for people to be tired of hearing about the virus and less concerned about catching it. Scientists know more about covid and have developed tools to treat and even prevent the most serious outcomes.

But many of us who are suffering from chronic illness or chronic pain are still wearing masks, practicing social distancing and taking other precautions.

As I go out and about in my daily life, I’ve noticed that mask use is somewhat minimal. People don’t seem to be as concerned about the virus and its variants, even as cases are skyrocketing again. I’m one of the few who still wears a mask in crowded indoor places, airplanes and restaurants.

Fortunately, I have not yet been infected with covid. I attribute that to always being cautious in public (sometimes even outside) and when around family members who I know aren’t taking precautions. Being vaccinated and boosted is another layer of protection I believe has helped me.

The choice to be vaccinated is a personal one and should not be looked at as a political issue or be a source of ridicule. The same goes for mask use. Sometimes people look at me funny because I still wear a mask, but I am “allowed” to do that, just as others are equally allowed to stop wearing theirs.

I don’t judge people who choose not to wear a mask, and conversely, I shouldn’t be judged for wearing one.

Part of my caution comes from having a dysfunctional and overactive immune system, which is altered by a medication I take to control symptoms of rheumatoid arthritis (RA). This medication suppresses a certain part of the immune system that is implicated in the development of RA.  Rheumatoid arthritis primarily attacks the joints, but can also attack the heart, lungs and eyes.

Having to take this particular med (commonly called a biologic), makes me more vulnerable to contracting all types of infection, including covid. It also makes it more difficult to recover from infections and can lead to serious or even deadly complications. 

In addition, the threat of possibly ending up with long covid, when symptoms linger for months or longer, is a concern of mine, especially since fatigue is a major part of long covid syndrome. Profound and disabling fatigue is also a feature of RA and fibromyalgia, so anything I can do to prevent another illness that causes fatigue is important to me. Even mild cases of covid can cause long covid, according to researchers.

Covid can also lead to physical complications. Studies have shown that the virus can cause neurological problems, difficulty breathing, joint or muscle pain, blood clots or other vascular issues, chest pain and unpleasant digestive symptoms.

Furthermore, the virus has been associated with increased psychological problems, such as depression and anxiety. The media has reported on the unfortunate suicides of people who had been suffering from long covid and were unable to get any relief besides ending their own lives.

In the long term, it remains to be seen how covid will affect the millions of us who are already suffering from chronic pain and illness. Fortunately, there are treatments that help with the symptoms and recovery for the majority of people who become infected. There are also medications that can save the lives of those who are at high risk of severe illness.

As more time passes, I’m sure other treatments will emerge, and I’m hopeful that as a chronic pain sufferer with multiple chronic illnesses, I will be okay if I do someday end up getting sick with covid.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Experimental Gel Could Replace Damaged Knee Cartilage

By Pat Anson, PNN Editor

Clinical trials on humans may begin as soon as next year on an experimental hydrogel designed to replace damaged cartilage in arthritic knees, according to researchers at Duke University, who say the gel is up to three times stronger than natural cartilage.   

Implants made of the material are currently being tested on sheep by Sparta Biomedical, a medical device company that is developing a line of synthetic cartilage.

“If everything goes according to plan, the clinical trial should start as soon as April 2023,”  Benjamin Wiley, PhD, Sparta’s chief technology officer and a Duke chemistry professor, said in a press release. “I think this will be a dramatic change in treatment for people.”

Wiley says hydrogel implants could someday be used as an alternative to total knee replacement surgery, one of the fastest growing elective procedures in the United States. About one in six adults suffer from knee osteoarthritis, a painful disorder that leads to thinning of cartilage and progressive joint damage.

Often considered the treatment of last resort, knee replacement surgery can be problematic. Studies have found that about a third of the patients who have their knees replaced continue to experience chronic pain. The artificial joints also have a limited life span and sometimes need to be replaced after a few years.   

“There's just not very good options out there,” said Wiley.

To make the hydrogel, Wiley and his team took thin sheets of cellulose fibers and infused them with a water absorbing polymer, creating a Jello-like material that is surprisingly strong. The cellulose fibers act like the collagen in natural cartilage, giving the gel strength when pulled or stretched.

Natural cartilage can withstand up to 8,500 pounds per inch of tugging and squishing before reaching a breaking point. The hydrogel can handle even more pressure and is 66% stronger than cartilage when compressed, the equivalent of parking a car on a postage stamp.

“It’s really off the charts in terms of hydrogel strength,” Wiley says.

Duke researchers first reported in 2020 that they had developed a hydrogel strong enough for knees, but using it to replace cartilage presented some design challenges. Hydrogels are difficult to attach directly to bone or cartilage to keep them from breaking loose or sliding off during intense activities.

They got around that problem by cementing and clamping the hydrogel to a titanium base, which is then anchored into a small hole where the damaged cartilage used to be. Tests showed the design stays fastened 68% more firmly than natural cartilage on bone.

In wear tests, the researchers took the hydrogel and natural cartilage and spun them against each other a million times, with a pressure similar to what the knee experiences during walking. Using high-resolution X-ray imaging, they found that the artificial cartilage held up three times better than the real thing.

DUKE UNIVERSITY IMAGE

And because the hydrogel mimics the smooth and cushiony nature of real cartilage, it protects other joint surfaces from being damaged as they slide against the implant. Other researchers have tried replacing cartilage with implants made of metal or polyethylene, but because those materials are stiffer than cartilage, they can chafe against other parts of the knee.

The research study, published in the journal Advanced Functional Materials, was funded by Sparta Biomedical and Duke University.

An experimental gel also shows promise as a treatment for low back pain caused by degenerative disc disease, according to a recent small study. Hydrafil – an injectable gel developed by ReGelTec – fills in cracks and tears in damaged discs, restoring the disc’s structural integrity. The injection procedure is minimally invasive and only takes about 30 minutes.

Over 72 Million Americans Suffer Chronic Low Back Pain

By Pat Anson, PNN Editor

Nearly 3 out of 10 U.S. adults – 72.3 million people – currently suffer from chronic low back pain, surpassing the number of Americans who have arthritis, diabetes or heart disease, according to a large new Harris Poll. Over a third of those surveyed (36%) rate their back pain as “severe” or the “worst pain possible” and nearly half (44%) said they’ve experienced back pain for at least five years.

Over 5,000 adults participated in the online survey, which was sponsored by Vertos Medical, a company that makes medical devices to treat lumbar spinal stenosis (LSS).

One of the major findings in the survey is that over a third (37%) of adults with chronic low back pain (CLBP) have never been told by a healthcare professional what causes their pain. The vast majority (84%) say they wish there were better treatment options for CLBP.

"These survey results demonstrate that people with chronic low back pain are suffering greatly over long periods of time, and many have resigned themselves to living in a debilitated state," Kathy Steinberg, Vice President of Media and Communications Research at The Harris Poll, said in a statement. "The fact that more than a third are not being told what is causing their pain, such as LSS or an enlarged ligament, makes it more difficult to treat that pain.”

Lower back pain is the leading cause of disability, affecting about 540 million people worldwide. With so many people suffering, you'd think there would be a consensus on the best way to treat CLBP. But a 2018 review by The Lancet found that low back pain is usually treated with bad advice, inappropriate tests, risky surgeries and painkillers -- often against treatment guidelines.

The Harris Poll found that many Americans with CLBP are being treated with ineffective therapies, resulting in multiple visits to multiple doctors. On average, the typical back pain sufferer has sought relief from at least three healthcare providers, with an average of 4 office visits in the last year.  

Over one in five (21%) have had epidural steroid injections (ESIs), with 37% having 5 or more injections. ESI’s are not FDA-approved and the agency has warned that injections into the epidural space can result in rare but serious neurological problems, including loss of vision, stroke and paralysis. ESI’s were rated as one of the least effective treatments for CLBP in the Harris Poll.

Nearly a third of those surveyed (30%) said they have been prescribed opioids and 15% said they are currently taking them, even though medical guidelines caution that opioids are not appropriate for CLBP.

Opioids may not be recommended, but nearly 8 out of 10 (79%) said the medications were very or somewhat effective, making opioids the highest rated treatment for CLBP, slightly ahead of “conservative or eastern medicine” treatments such as physical therapy, chiropractic care and acupuncture.

Source: The Harris Poll

About half of those surveyed say CLBP has a major or moderate impact on their quality of life (53%), physical health (50%) and mental health (39%). Most strongly agree or somewhat agree (78%) that they have accepted CLBP as a part of their life.  

For more information about treatment options for CLBP, visit Know Your Back Story, a website hosted by Vertos Medical that promotes treatments for lumbar spinal stenosis.

Computer Algorithms Improve Timeliness of Overdose Data

By Pat Anson, PNN Editor

An automated process using computer algorithms to analyze death certificates would speed up and improve data collection on drug overdose deaths, according to a new study by UCLA researchers.

The current system used to track U.S. overdose deaths relies on medical examiners and county coroners – including some with little medical training -- to determine the cause of death and drugs involved. Death certificates are then sent to local jurisdictions or the Centers for Disease Control and Prevention, which codes them according to the International Statistical Classification of Diseases and Related Health Problems, Tenth Edition (ICD-10).

The coding process is manual and time consuming, resulting in delays of several months before the deaths are included in CDC overdose data. With drug deaths at record levels and more dangerous substances entering the illicit drug supply, researchers say that antiquated system delays an effective public health response.

"The overdose crisis in America is the number one cause of death in young adults, but we don't know the actual number of overdose deaths until months after the fact," said lead author David Goodman-Meza, MD, assistant professor of medicine in the division of infectious diseases at the David Geffen School of Medicine at UCLA.

"We also don't know the number of overdoses in our communities, as rapidly released data is only available at the state level, at best. We need systems that get this data out fast and at a local level so public health can respond. Machine learning and natural language processing can help bridge this gap."

Goodman-Meza and his colleagues used computer algorithms to analyze the text for keywords in nearly 35,500 death certificates from nine U.S. counties in 2020. The counties include major cities such as Chicago, Los Angeles, San Diego and Milwaukee.

The researchers say their automated system demonstrated “excellent diagnostic performance” in classifying the drugs involved in overdoses.

“We found that for most substances evaluated, the performance of these algorithms was perfect or near perfect. These models could be used to automate classification of unstructured free-text, thus avoiding the manual and time-consuming process of individually reading each entry and classifying them to a specific substance,” researchers reported in JAMA Network Open.

“Excellent performance was shown for multiple substances, including any opioid, heroin, fentanyl, methamphetamine, cocaine, and alcohol using models for general text. Yet for prescription opioids and benzodiazepines, there was a considerable performance gap.”

That “performance gap” is due in part to weaknesses in the drug classification system, which lumps many synthetic opioids under the same ICD-10 code, including fentanyl, fentanyl analogs, tramadol and buprenorphine – a semi-synthetic opioid used in the addiction treatment drug Suboxone.

In the past, CDC has classified all drug deaths using that code as “prescription opioid overdoses” even though the drugs may have been illicit --- which is the case for the vast majority of deaths involving fentanyl. This resulted in government estimates of prescription opioid overdoses being significantly inflated for many years.

Using the computer algorithms developed at UCLA, prescription opioids ranked far behind fentanyl, alcohol and other substances identified as the cause of death in 8,738 overdoses.

Drugs Involved in 2020 Overdose Deaths in 9 U.S. Counties

Source: JAMA Network Open

Until recently, there was a 6-month time lag in drug deaths being counted in the CDC’s monthly Provisional Drug Overdose Death Counts report. The timeliness of the reports were improved earlier this year to a 4-month delay, but Goodman-Meza says they could be improved even more.  

"If these algorithms are embedded within medical examiner's offices, the time could be reduced to as early as toxicology testing is completed, which could be about three weeks after the death," he said.

How Intractable Pain Causes Brain Tissue Loss

By Dr. Forest Tennant, PNN Columnist

The brain not only controls pain but the endocrine, cardiovascular, metabolic, respiratory and gastrointestinal systems. Any or all of these biologic systems may malfunction if there is brain tissue loss.

Beginning in 2004, brain scan studies began to document that brain tissue loss can be caused by intractable pain. Today, almost 20 years later, this important fact appears to be either unknown or a mystery to both the public and medical professionals.

Basic science researchers have unraveled the complex process of how and why this pathological phenomenon may occur. A good understanding of how this pathology develops is critical to properly care for and treat persons who develop intractable pain whether due to a disease or an injury.

What Causes Tissue Loss?

Tissue loss anywhere in the body is caused by inflammation, autoimmunity, or loss of blood supply due to trauma or disease. The brain scan studies done since 2004 that documented brain tissue loss were not done in persons who had a stroke or head trauma, but in pain patients experiencing inflammation and autoimmunity (i.e., collagen deterioration). It turns out that both biologic mechanisms may operate to cause brain tissue loss in intractable pain patients.

In the pursuit of understanding brain tissue loss and its accompanying malfunctions, it has been discovered that the brain and spinal cord (central nervous system or CNS) contain cells called microglia. They are closely akin to the immune protective cells in the blood stream which are called a “lymphocytes.”

The microglia in the CNS lay dormant until a harmful infection, toxin or bioelectric magnetic signal enters its domain, at which time it activates to capture and encapsulate the danger or produce inflammation to destroy the offender.

If the microglia are overwhelmed by some danger, such as a painful disease that isn’t cured, it produces excess inflammation that destroys some brain tissue which can be seen on special brain scans. Some viruses such as Epstein Barr may hibernate in microglia cells and create an autoimmune response, which magnifies inflammation and brain tissue loss.

Intractable pain diseases such as adhesive arachnoiditis (AA), reflex sympathetic dystrophy (CRPS/RSD), and genetic connective tissue diseases such as Ehlers-Danlos syndrome may incessantly produce toxic tissue particles and/or bioelectromagnetic signals that perpetuate microglial inflammation, tissue loss and CNS malfunctions.

This is the reason why proper pain management must have two targets: the pain generator and CNS inflammation.

How To Know You Have Lost Brain Tissue

If your pain is constant and never totally goes away, it means you have lost some brain tissue and neurotransmitters that normally shut off pain. If you have episodes of sweating, heat or anxiety, you probably have inflammation that is flaring. Naturally, if you feel you have lost some reading, calculating or memory capacity, it possibly means you have lost some brain tissue. MRI’s may also show some fibrous scars.

Fortunately, studies show that if a painful disease or injury is cured or reduced, brain tissue can regenerate. While we can’t guarantee that brain tissue will be restored, we offer here our simple, immediate and first step recommendations using non-prescription measures.

First, do you know the name and characteristics of the disease or injury that is causing your pain? Are you engaging in specific treatments to reduce or even cure your disease, or are you simply taking symptomatic pain relief medications? 

Start at least two herbal-botanical agents that have some clinical indications that they reduce inflammation in the brain and spinal cord: serrapeptase-palmitoylethanolamide (PEA) and astragalus-curcumin-luteolin-nanokinase. You can take different agents on different days. 

Increase the amount of protein (meat, fish, poultry, eggs) in your diet. Consider a collagen supplement. Limit starches and sugars. 

Start taking these vitamins and minerals:

• Vitamin C - 2,000mg in the AM & PM

• Vitamin B-12, Vitamin D

• Minerals: Magnesium and selenium

We recommend vitamins daily and minerals 3 to 5 days a week. 

The above will help you stop additional tissue loss and hopefully regenerate brain tissue.  

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Why Antibiotics Can Lead to a C. Diff Infection

By Madora Pennington, PNN Columnist

Got antibiotics? Then you may be on your way to a dangerous and potentially deadly infection. When antibiotics alter the balance of intestinal flora, a bacteria that causes diarrhea and inflammation of the colon -- clostridioides difficile -- can take over and result in a C. diff infection.

That is what happened to Kristy Collins. It took two rounds of antibiotics to clear up her severe ear and sinus infection. A few days later, a lunchtime salad left Kristy with a strangely upset stomach. She thought it was nothing more than a bit of food poisoning, but soon she was having malodorous belches and the foulest smelling diarrhea. She also became severely dehydrated.

At first, her doctor suspected a stomach virus. But when her stomach troubles didn’t relent, a stool test revealed that Kristy had C. diff.  Luckily, she was diagnosed and treated within a few days.

Because she has Ehlers-Danlos Syndrome (EDS), an inherited chronic illness, Kristy is a seasoned patient with a medical team in place. But having EDS also makes her more like to get C. diff. Thus far, she has had 19 surgeries for EDS-related problems. Most surgical procedures require a round of antibiotics to prevent infection and more if an infection occurs after surgery.

After her bout with C. diff, Kristy needed another surgery. She and her doctors were very concerned about a possible C. diff recurrence, as about 1 in 5 patients will get another infection. Kristy’s doctors tested her after surgery to ensure it had not returned.

Kristy worries whenever she needs antibiotics and questions her doctors if they are truly necessary. She already follows a very healthy diet, which helps manage her chronic illness and suspects this may be part of why she has not had a C. diff recurrence. She also follows her doctors’ advice.

“It was the first time doctors told me to take probiotics,” Kristy says, which she did while taking antibiotics. Probiotics are living microorganisms that enhance intestinal health. They are found in fermented food like yogurt and sauerkraut or made into supplements.

Antibiotics tend to alter that flora in the colon, creating an environment where C diff can flourish. Many people have immune systems that can handle a C. diff infection without symptoms, but others get very ill with watery diarrhea that may contain blood or mucus, or cause nausea, vomiting, loss of appetite, abdominal pain, and bloating. At its worst, C. diff can cause a loss of blood circulation, sepsis, perforated bowel, or swelling so severe it shuts down the colon.

It is not just antibiotics that can cause a C. diff infection. Other possibilities are chemotherapy treatment, proton pump inhibitor medications (usually used to treat acid reflux), kidney or liver disease, malnutrition, or simply being an older person. C. diff infects approximately half a million Americans annually, according to the CDC. 

C. diff can also be fatal. In the U.S., nearly 30,000 people die every year from a C. diff infection. Diagnosis is usually made by testing a stool sample. It is treated with antibiotics, monoclonal antibodies, or, in severe cases, surgery.

How to Prevent C. Diff

Good hygiene practices can help prevent its spread. For C. diff, hand washing with soap and water is more effective than using alcohol-based hand sanitizers. It is also essential to limit the use of antibiotics to situations when they are truly necessary, to avoid disrupting the balance of bacteria in the colon. Many doctors recommend repopulating the beneficial bacteria with probiotic supplementation during or after antibiotic treatment.

Recovering from a C. diff infection can be mysterious as well as complicated. Many patients are not advised on how or what to eat or drink. Food can seem like the enemy, and meals can feel traumatizing.

To address this unmet need, the Peggy Lillis Foundation, a non-profit advocacy organization created in honor of a beloved kindergarten teacher whose life was taken suddenly by C. diff, recently published a nutrition and lifestyle guide.

 “This guide begins to address the dearth of information by combining medical expertise, dietary guidance, and first-hand knowledge from C. diff survivors,” says Executive Director Christian John Lillis.

The guide is sponsored by probiotic manufacturer Bio-K Plus and put together by the PLF’s Scientific Advisory Council. It covers tips on managing the acute phase of a C. diff infection, preventing a recurrence, improving gut health, dealing with the emotional implications of C. diff, and recipes. It is available to download free by clicking here.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

Fatigue and Headache Common Symptoms of Long Covid

By Pat Anson, PNN Editor

Fatigue, headache and muscle aches are the most common symptoms reported by people suffering from long covid, according to a comprehensive new study by researchers at the Medical College of Georgia (MCG). Cough, changes in smell and taste, fever, chills and cognitive problems also ranked high on the long list of lingering symptoms from COVID-19.

“There are a lot of symptoms that we did not know early on in the pandemic what to make of them, but now it’s clear there is a long COVID syndrome and that a lot of people are affected,” says lead author Elizabeth Rutkowski, MD, an associate professor of neurology at MCG.

The study findings, published in the journal ScienceDirect, involve the first 200 patients enrolled in the COVID-19 Neurological and Molecular Prospective Cohort Study (CONGA) in Georgia. Participants were recruited on average about four months after testing positive for the COVID-19 virus. Researchers eventually hope to recruit about 500 people for CONGA.

While the findings to date are not surprising and are consistent with what other investigators have learned about long covid, Rutkowski says it was surprising that symptoms initially reported by CONGA participants often didn’t match what further testing found.

For example, the majority of participants reported taste and smell changes, but objective testing of both senses did not always line up with what researchers found. Part of the discrepancy may be a change in the quality of their taste and smell rather than pure impaired ability.

“They eat a chicken sandwich and it tastes like smoke or candles or some weird other thing, but our taste strips are trying to depict specific tastes like salty and sweet,” Rutkowski says.

Eighty percent of the first 200 participants reported neurological problems, with fatigue the most common symptom:

Top Ten Symptoms of Long Covid

1. Fatigue 68.5%

2. Headache 66.5%

3. Muscle aches 57%

4. Cough 55.5%

5. Changes in smell 54.5%

6. Changes in taste 54%

7. Fever 50%

8. Chills 48%

9. Nasal Congestion 47.5%

10. Poor Appetite 47%

Nearly half the participants (47%) met the criteria for mild cognitive impairment, with 30% demonstrating impaired vocabulary, 32% having impaired working memory, and 21% reporting confusion. Researchers believe these cognitive issues may reflect the long-term isolation many participants experienced during the pandemic.

“You are not doing what you would normally do, like hanging out with your friends, the things that bring most people joy,” Rutkowski says. “On top of that, you may be dealing with physical ailments, lost friends and family members and loss of your job.”

Blacks Disproportionately Affected

Nearly two-thirds of the 200 CONGA participants were female, with an average age of 45. Nearly 40% were African-American. One of the study’s goals is to get a better understanding of how COVID-19 impacts African-Americans, who make up a third of Georgia’s population.

Researchers found that Black participants were disproportionately affected by long covid, with 75% meeting the criteria for mild cognitive impairment, compared to only 23.4% of white participants. Blacks were also more likely to have impaired vocabulary and memory. The findings likely indicate that cognitive tests assess different ethnic groups differently and may overestimate cognitive impairment in disadvantaged populations.

“African American patients appear to score significantly worse on quantitative cognitive testing compared to Non-Hispanic White patients, which likely underscore the disparities in how cognitive tests assess different ethnic groups due to various systemic factors including differences is socioeconomic status, psychosocial factors, and physical health,” researchers said.

Previous studies have found that Black and Hispanic individuals are twice as likely to be hospitalized by COVID-19, and ethnic and racial minorities are more likely to live in areas with higher rates of infection.

‘Cognitive Rehab’ May Help Clear Brain Fog

By Judith Graham, Kaiser Health News

Eight months after falling ill with covid-19, the 73-year-old woman couldn’t remember what her husband had told her a few hours before. She would forget to remove laundry from the dryer at the end of the cycle. She would turn on the tap at a sink and walk away.

Before covid, the woman had been doing bookkeeping for a local business. Now, she couldn’t add single-digit numbers in her head. Was it the earliest stage of dementia, unmasked by covid? No. When a therapist assessed the woman’s cognition, her scores were normal.

What was going on? Like many people who’ve contracted covid, this woman was having difficulty sustaining attention, organizing activities, and multitasking. She complained of brain fog. She didn’t feel like herself.

But this patient was lucky. Jill Jonas, an occupational therapist associated with the Washington University School of Medicine in St. Louis who described her to me, has been providing cognitive rehabilitation to the patient, and she is getting better.

Cognitive rehabilitation is therapy for people whose brains have been injured by concussions, traumatic accidents, strokes, or neurodegenerative conditions such as Parkinson’s disease. It’s a suite of interventions designed to help people recover from brain injuries, if possible, and adapt to ongoing cognitive impairment. Services are typically provided by speech and occupational therapists, neuropsychologists and neurorehabilitation experts.

In a recent development, some medical centers are offering cognitive rehabilitation to patients with long covid, who have symptoms that persist several months or longer after the initial infection. According to the Centers for Disease Control and Prevention, about 1 in 4 older adults who survive covid have at least one persistent symptom.

“Anecdotally, we’re seeing a good number of people make significant gains with the right kinds of interventions,” said Monique Tremaine, director of neuropsychology and cognitive rehabilitation at Hackensack Meridian Health’s JFK Johnson Rehabilitation Institute in New Jersey.

Among the post-covid cognitive complaints being addressed are problems with attention, language, information processing, memory, and visual-spatial orientation. A recent review in JAMA Psychiatry found that up to 47% of patients hospitalized in intensive care with covid developed problems of this sort.

Seniors More Vulnerable

There’s emerging evidence that seniors are more likely to experience cognitive challenges post-covid than younger people — a vulnerability attributed, in part, to older adults’ propensity to have other medical conditions. Cognitive challenges arise because of small blood clots, chronic inflammation, abnormal immune responses, brain injuries such as strokes and hemorrhages, viral persistence, and neurodegeneration triggered by covid.

Getting help starts with an assessment by a rehabilitation professional to pinpoint cognitive tasks that need attention and determine the severity of a person’s difficulties. One person may need help finding words while speaking, for instance, while another may need help with planning and yet another may not be processing information efficiently. Several deficits may be present at the same time.

Next comes an effort to understand how patients’ cognitive issues affect their daily lives. Among the questions that therapists will ask, according to Jason Smith, a rehabilitation psychologist at the University of Texas Southwestern Medical Center in Dallas: “Is this showing up at work? At home? Somewhere else? Which activities are being affected? What’s most important to you and what do you want to work on?”

To try to restore brain circuits that have been damaged, patients may be prescribed a series of repetitive exercises. If attention is the issue, for instance, a therapist might tap a finger on the table once or twice and ask a patient to do the same, repeating it multiple times. This type of intervention is known as restorative cognitive rehabilitation.

“It isn’t easy because it’s so monotonous and someone can easily lose attentional focus,” said Joe Giacino, a professor of physical medicine and rehabilitation at Harvard Medical School. “But it’s a kind of muscle building for the brain.”

A therapist might then ask the patient to do two things at once: repeat the tapping task while answering questions about their personal background, for instance.

“Now the brain has to split attention — a much more demanding task — and you’re building connections where they can be built,” Giacino explained.

To address impairments that interfere with people’s daily lives, a therapist will work on practical strategies with patients. Examples include making lists, setting alarms or reminders, breaking down tasks into steps, balancing activity with rest, figuring out how to conserve energy, and learning how to slow down and assess what needs to be done before taking action.

A growing body of evidence shows that “older adults can learn to use these strategies and that it does, in fact, enhance their everyday life,” said Alyssa Lanzi, a research assistant professor who studies cognitive rehabilitation at the University of Delaware.

Along the way, patients and therapists discuss what worked well and what didn’t, and practice useful skills, such as using calendars or notebooks as memory aids.

“As patients become more aware of where difficulties occur and why, they can prepare for them and they start seeing improvement,” said Lyana Kardanova Frantz, a speech therapist at Johns Hopkins University. “A lot of my patients say, ‘I had no idea this could be so helpful.’”

Johns Hopkins has been conducting neuropsychiatric exams on patients who come to its post-covid clinic. About 67% have mild to moderate cognitive dysfunction at least three months after being infected, said Dr. Alba Miranda Azola, co-director of Johns Hopkins’ Post-Acute COVID-19 Team. When cognitive rehabilitation is recommended, patients usually meet with therapists once or twice a week for two to three months.

Before this kind of therapy can be tried, other problems may need to be addressed. “We want to make sure that people are sleeping enough, maintaining their nutrition and hydration, and getting physical exercise that maintains blood flow and oxygenation to the brain,” Frantz said. “All of those impact our cognitive function and communication.”

Depression and anxiety — common companions for people who are seriously ill or disabled — also need attention. “A lot of times when people are struggling to manage deficits, they’re focusing on what they were able to do in the past and really mourning that loss of efficiency,” Tremaine said. “There’s a large psychological component as well that needs to be managed.”

Medicare usually covers cognitive rehabilitation, but Medicare Advantage plans may differ in the type and length of therapy they’ll approve and how much they’ll reimburse providers — an issue that can affect access to care.

Still, Tremaine noted, “not a lot of people know about cognitive rehabilitation or understand what it does, and it remains underutilized.” She and other experts don’t recommend digital brain-training programs marketed to consumers as a substitute for practitioner-led cognitive rehabilitation because of the lack of individualized assessment, feedback, and coaching.

Also, experts warn, while cognitive rehabilitation can help people with mild cognitive impairment, it’s not appropriate for people who have advanced dementia.

If you’re noticing cognitive changes of concern, ask for a referral from your primary care physician to an occupational or speech therapist, said Erin Foster, an associate professor of occupational therapy, neurology, and psychiatry at Washington University School of Medicine in St. Louis. Be sure to ask therapists if they have experience addressing memory and thinking issues in daily life, she recommended.

“If there’s a medical center in your area with a rehabilitation department, get in touch with them and ask for a referral to cognitive rehabilitation,” said Smith, of UT Southwestern Medical Center. “The professional discipline that helps the most with cognitive rehabilitation is going to be rehabilitation medicine.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

A Pained Life: The Blame Game

By Carol Levy, PNN Columnist

Do you ever second guess yourself or play the blame game?  I did it again when I found myself doing too much.

While reading, my eye pain from trigeminal neuralgia started to grow and I thought, “Oh heck, I can do one more page.” And with each additional page, I repeated what has become a mantra: “It's okay. I can do it.”  

But of course, I can't. Not without paying a price. 

I finished most of what I wanted to do, my eye pain constantly telling and then yelling at me, “Stop already!”  

By the time I gave in and stopped, the level of pain was exquisite. I had no choice but to go to straight to bed, and try not to move my eyes for 15 minutes, if I was lucky, or an hour or more if I was not 

I do the same when going outside. I know a breeze, or even worse the wind, will again trigger the pain from trigeminal neuralgia. Any touch to the affected side of my face does. But I so much want to go outside.  

“Oh, the wind doesn't look that bad,” I’ll say to myself as I watch the tree in my backyard swaying from the strength of the wind against it. I go outside, the pain is triggered and I scurry back inside as fast as I can, then wait the 15 minutes to an hour before the pain calms down.   

The whole time I lie there and self-flagellate: “I knew to stop, but heaven forbid I should do what I know is right. I knew better. It serves me right.” And so on. 

Most people do this kind of thing. “I knew I shouldn't have eaten that last slice of cake, this stomach ache serves me right.” or “I knew I shouldn't have made that right turn back there and now I'm lost.”  

It's normal, for everyone but us. Because our lives stopped being “normal” the moment the pain took over. For me, “normal” meant reading for as long as I wanted, even for hours at a time; watching a movie and enjoying the brightness and movements on the screen; walking outside even when the wind is strong; or enjoying the feel of snowflakes falling on my face.  

My “normal” for the last few decades has been the exact opposite. 

We can't blame ourselves when normal doesn't work for us anymore. Our “new normal” is stopping before the pain gets too bad, being honest and saying, “I'm sorry. I can't do that activity or go with you today.” 

To me, my new normal is an awful thing, but the longer I try to deny it, to hold on to my old normal, the harder it is to accept. And it seems there is no time limit for how long you can hold onto the false hope that the old normal will return.  

The irony is that the word normal means “standard,” yet everyone's normal is defined by their own peculiar standards and needs. So, at the end of the day, there is no true normal for anyone but the one measured by their own internal yardstick.

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.

Physical Therapy Reduces Healthcare Costs for Low Back Pain

By Pat Anson, PNN Editor

Almost everyone suffers from low back pain at some point in their lives. Most recover in a few days, but for some the pain lingers and become chronic, making low back pain the world’s leading cause of disability.  

Why are some people able to recover quickly from low back pain?

For many, the answer may be early treatment with physical therapy (PT), according to a new study by researchers at Johns Hopkins Medicine.   

“Our goal was to determine if early PT for patients with lower back pain had an impact on their overall health care resource utilization,” says senior author Richard Skolasky Jr., ScD, director of the Johns Hopkins Spine Outcomes Research Center. “We were especially curious about the 30 days after initial symptom onset, as this is when patients are most likely to seek care.” 

Skolasky and his colleagues analyzed healthcare data from 2010 to 2014 for nearly a million U.S. adults with acute low back pain, excluding those suffering from serious disorders such as arthritis or spinal cord injuries. About 10% of the patients received early treatment with physical therapy.

The study findings, recently published by BMC Health Services Research, showed that patients getting early PT were significantly less likely to see a chiropractor, orthopedic surgeon or pain specialist after 30 days than those who did not get physical therapy. They were also less likely to get advanced imaging, epidural steroid injections or to visit an emergency room.

Researchers estimate that healthcare costs for a typical patient getting early PT was about $500 less over 30 days than those not receiving physical therapy.

Another key finding from the study was significant geographical differences in the use of physical therapy. Patients in the West (16%) and Northeast (15%) were nearly twice as likely to get early PT than those in the Midwest (9.4%) and South (8.6%). The authors offered no explanation for why treatment patterns varied so much by region.

The study did not specifically examine whether physical therapy benefits patients with low back pain more than other forms of treatment, but the findings suggest that they did. Researchers say health outcomes should be examined more closely in future studies.

“As the U.S. population ages, the prevalence of lower back pain is expected to increase, along with the associated costs of treating it,” says Skolasky. “Furthermore, with advances in imaging and treatments, the cost of managing lower back pain has increased substantially. Our findings have important implications that may guide health care policy when examining downstream health care costs and resource utilization.” 

Previous studies have found that physical therapy and regular exercise significantly reduces low back pain. Other studies also found little evidence to support the use of opioids, spinal injections and acetaminophen for low back pain.  

Lyme Disease Cases Soar in U.S.

By Pat Anson, PNN Editor

Diagnoses of Lyme disease in the United States have soared over the past 15 years, primarily in rural areas in the Northeast, according to a new analysis of private insurance claims by FAIR Health, a nonprofit that tracks healthcare costs and insurance trends.   

Lyme disease is a bacterial illness spread by ticks. Left untreated, it can lead to chronic fatigue, muscle and joint pain, cognitive issues and other long-term symptoms that are often misdiagnosed as fibromyalgia, neuropathy or autoimmune disorders.

In its analysis of over 36 billion insurance claims from 2007 to 2021, FAIR Health said that claims with a Lyme disease diagnosis rose 357 percent in rural areas and 65 percent in urban areas. The highest rates of Lyme disease were in New Jersey, Vermont, Maine, Rhode Island and Connecticut.

“Lyme disease remains a growing public health concern. FAIR Health will continue to use its repository of claims data to provide actionable and relevant insights to healthcare stakeholders seeking to better understand the ongoing rise of Lyme disease cases,” FAIR Health President Robin Gelburd said in a press release.

The FAIR Health study found that malaise, fatigue and soft-tissue-related symptoms were significantly more common in Lyme patients than in the overall patient population.

Other early symptoms of Lyme disease include fever, chills, headache, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite. The rash grows in size and sometimes resembles a bulls-eye.

Although Lyme disease is treatable with antibiotics, some patients develop long-term symptoms known as Lyme disease syndrome or chronic Lyme disease.

About 30,000 Lyme cases are reported annually by state health departments. The CDC estimates the actual number of cases is probably much higher and that about 300,000 Americans may become infected every year.

Most reported cases of Lyme disease occur in the Northeast, mid-Atlantic and upper Midwest, especially during the summer months when more people spend time outdoors. Recent studies show Lyme is spreading to neighboring states and is no longer just a seasonal disease, possibly due to the effects of climate change.

Epidural Shortages Impacting Pain Management Worldwide

By Pat Anson, PNN Editor

Global shortages of epidural catheters and contrast dye used in medical imaging are forcing some healthcare providers to ration or postpone epidural procedures, which are commonly used to relieve back pain, labor pain and as spinal anesthesia for some surgeries.

At present, most of the catheter shortages are being reported by hospitals in Canada, with anecdotal reports of shortages in the United States. Epidural catheters are thin plastic tubes that are inserted into the lower back by a needle to allow physicians to deliver steroids and other pain medications to the spinal area.

Health Canada last week added Flex-Tip epidural catheterization kits to its list of medical device shortages. The shortage began on July 18 and is expected to continue until the end of the year. The epidural kits are made by Arrow International of Pennsylvania, which did not respond to a PNN request for comment.

The Vice-President of the Canadian Anesthesiologists’ Society said most of the shortages are in western Canada, and that healthcare providers are frustrated by a lack of information from catheter manufacturers and Health Canada.

“If the shortage is global, maybe it wouldn’t make a difference. But I do think that on the communication side, on the supply-chain side and the protocols that exist, there’s room for improvement,” Dr. Lucie Filteau told The Canadian Press. “We thought there were just isolated little pockets, and people started to become aware that it was more widespread.”

In May, an international supplier of epidural kits in the UK announced a disruption to its supply due to shortages of a blue dye used in tubing. The disruption was projected to last until July, but appears to be ongoing. Australia’s Therapeutic Goods Administration recently issued an alert warning of “temporary supply issues affecting popular brands of epidural kits in overseas markets.”

“We have anecdotally heard of shortages,” a spokesperson for the American Society of Anesthesiologists told PNN when asked about catheter shortages in the U.S. The organization was planning to survey its members to get a better idea of the extent of the problem. The U.S. Food and Drug Administration does not currently have epidural catheters on its list of medical device shortages.

Epidurals are widely used in the U.S. and Canada to relieve pain during labor and cesarean sections. The injections numb the lower part of the body, allowing expectant mothers to remain awake during child birth. Nitrous oxide – more commonly known as laughing gas – can be used as an alternative to epidurals.

In addition to treating labor pain, epidural injections are widely used for back pain. About 9 million epidural steroid injections are performed annually in the U.S., even though they are not FDA-approved. The FDA has warned that injection of steroids into the epidural space can result in rare but serious neurological problems, including loss of vision, stroke and paralysis.

Meanwhile, a global shortage of contrast dyes that began in April due to COVID-related supply chain disruptions in China appears to be easing. Contrast dyes — also known as imaging agents — play a vital role in epidural procedures because they help providers “see” where a needle is being placed. Even a minor mistake could lead to permanent damage to the spinal cord.

Australian health officials said last week the supply of imaging agents was improving, but that normal supplies are “not likely to resume before the end of 2022.” They urged providers to continue conserving contrast agents and to postpone imaging that was not urgent.

Gut Bacteria Identified as Cause of IBS

By Pat Anson, PNN Editor

Canadian researchers have identified one of the primary causes of Irritable Bowel Syndrome (IBS), a frustrating intestinal condition that causes abdominal pain, cramps, bloating, gas and diarrhea.

The culprit appears to be Klebsiella aerogenes, a strain of bacteria that causes white blood cells to produce excess amounts of histamine, a chemical that triggers a painful immune system response. Gut bacteria have long been suspected as a likely cause of IBS, but this is the first time a specific bacterial strain has been identified.  

Researchers at McMaster University and Queen’s University studied stool samples from both Canadian and American IBS patients, and found Klebsiella aerogenes in about 25 percent of them.

“We followed up these patients for several months and found high levels of stool histamine at the time when the patients reported severe pain, and low stool histamine when they were pain-free,” said senior author Premysl Bercik, MD, a gastroenterologist and professor at McMaster’s Michael G. DeGroote School of Medicine.

Further tests on laboratory mice that were colonized with gut microbes from IBS patients showed that several types of bacteria produced histamine, but Klebsiella aerogenes was a “super-producer.” The chemical is produced when histidine, an essential amino acid in animal and plant protein, is converted into histamine, triggering pain and inflammation.

“Now that we know how the histamine is produced in the gut, we can identify and develop therapies that target the histamine producing bacteria,” said first author Giada de Palma, an assistant professor of medicine at McMaster.

Researchers found that when mice colonized with histamine producing bacteria were fed a diet low in carbohydrates, histamine production dramatically decreased. That would explain the benefits of diets low in carbohydrates and high in dietary fiber, which are often recommended to IBS patients. Allergy medications that block histamine production may also be useful in treating IBS.

“Many but not all IBS patients will benefit from therapies targeting this histamine driven pathway,” said co-first author David Reed, assistant professor of medicine at Queen’s University.

The McMaster-Queens study was funded by the Canadian Institutes of Health Research and published in the journal Science Translational Medicine.

Waiting and Wanting to Die in Canada

By Ann Marie Gaudon, PNN Columnist

RIP Margaret Bristow October 23, 1959 – August 10, 2022

No, that’s not a typo. My friend Maggie will be dying in a few days, on August 10 to be exact.

Confused? I am trying to make sense of this, too.

One night a few months ago, I was hurting. Oh, my goodness was I hurting! I was lying in bed and decided to do a quick body scan.

I began with my head. I had a throbbing headache, which I suspect was a result of fairly severe TMJ. It felt like my jaw was locked solid, which is terrifically painful, and my tongue was burning as well.

I also was suffering with tinnitus that night, which is typically accompanied by severe ear pain. I also felt gastroesophageal reflux burning a fiery hole in my gut.

Next up was a severe back injury from 2017, which was irritated and oh boy did that ever hurt! Down I went to my bladder, which was burning from an interstitial cystitis flare. Pudendal neuralgia had nerve pain radiating from my sacrum down both legs and into both hips. Osteoarthritis had my hips, knees, legs and ankles throbbing.

Finally, both feet felt like I had knives stabbing into them over and over, as I now have plantar fasciitis to add to my list of pain conditions. What a state I was in. Neuropathic pain, visceral pain, and musculoskeletal pain -- all in a rage.

Nine different pains in total that night, which is not at all typical for me. I had nowhere to put this earthly body for more comfort. Sitting or lying on my back increased the pudendal neuralgia; lying on my side increased my ear and hip pain; lying on my stomach was painful for my neck; and standing increased the plantar fasciitis.

I had nowhere to go, so I lay there quite still. In case you are wondering, yes, I have medications and I took them all. I also took everything OTC that I had in the house. It didn’t seem to make any difference; the pain was surging and the medications were no match for it.

I thought to myself that if this were to become permanent, I would surely not survive it. My problem-solving brain told me the only way out would be the release of death. If nothing could tame all of these pains, what choice would I have? I couldn’t work like this and I couldn’t engage in relationships like this.  I could barely string together two sentences in my head.

I could not function in any capacity, so I lay there quite still, trying my best to be with the pain, but not overtaken by it. In that one horrible night, I understood why my sweet friend had chosen to die on August 10, 2022.

‘I Would Rather Have My Medication Back’

Maggie Bristow has been in chronic pain for over 25 years from fibromyalgia, degenerative disc disease, spinal stenosis and arthritis. Her pain became so severe that she was given opiate medication, which she took for many years. By 2016, the Ottawa woman felt the medication was not working very well, because her pain was increasing.

Already feeling pressured to reduce his prescribing, her pain physician took her off opiates and tried many other types of treatment, but nothing worked. He told her there was nothing else left to try.

To this day I do not fully understand this part of Maggie’s story. Was she properly titrated on opiate medications? Were they combined with something else? What about novel approaches like opiates placed in the spinal fluid? I will never know. I do know that Maggie felt she was out of options.

“My body constantly feels like a blow torch has been taken to it. I’ve not been able to sleep in a horizontal position for 20 years and I am housebound due to the intense pain,” Maggie told me.

“Simple tasks like opening the mail, preparing food and maintaining good hygiene are agonizing, monumental tasks. I would rather have my medication back or be allowed to die peacefully.”

With her pain increasing, Maggie just wanted it to stop. That year she applied for assisted death under Canada’s Medical Assistance in Dying law (MAID), and was flatly denied because she did not meet the criterion that a natural death be “reasonably foreseeable."

MAGGIE AND HER LATE PARTNER, BRIAN

Maggie persevered and once again in 2019 applied for MAID. For the second time, she received a phone call telling her that her request had been denied. She felt very deflated, upset and confused.

Quality of life continued to worsen for Maggie and she waited patiently for new legislation to pass last year amending the MAID law, which removed the criterion that “death was foreseeable.”

When she applied for a third time, the MAID physician requested a new MRI, a second opinion from another neurologist, and someone to give her opiate pain medication. Maggie was dumbfounded at this third request, because she was searching for five years for opiates to no avail. She chose to ignore that, and responded to the other two requests which showed results that her spine was “totally inoperable.”

Weeks and months dragged on for Maggie. Finally, a call came from her general practitioner who told her that the MAID physician advised that she tried to contact Maggie with no success. Maggie said that was nonsense because she is housebound and never heard from her. The truth was that the MAID physician was not comfortable signing off on her case.

Part of the policy for MAID is that if a doctor is unwilling to help you, they must refer you to another doctor who will provide service for you. This however did not happen. Maggie was left hanging and extremely put out for all the time wasted when she could have been researching other avenues. She was now desperate.

A phone call took place to provincial MAID, with Maggie telling them that the Ottawa MAID declined her request. What were her options? They told her they would just refer her back to Ottawa. Really? Maggie was now quite angry and she called her GP, who reached someone else in the organization and found a MAID physician in Toronto who would help her to die.

This is where I go off the rails. A doctor will not help you get opiate medication, but will help you die? This was not the Canada that I was born into.

The MAID physician in Toronto reached Maggie via video conference and after her assessment said she would sign off immediately on her request. Maggie felt good about this but also knew that it takes two doctors to sign off for your peaceful death to happen.

Time dragged on again. The GP called her contact to ask what was happening and soon another video conference with a second MAID physician took place. This physician did not give Maggie any indication of what the decision was. Weeks later, Maggie received a call from the first doctor, who told her that her application was approved.

They would indeed help her to die as per her wishes, on August 10, 2022 at approximately 2:00 pm. They will have a long drive to get there, but Maggie’s sister will be with her. Afterwards, her organs will be harvested for donation and her body will be shipped back to Ottawa for cremation.   

Maggie blames Health Canada for the many problems she and other Canadian patients in severe pain have getting opiate medication.

“People like me, and there are many of us, continue to suffer. Suicide is our only option. This is a level of cruelty that is very difficult to fathom and really has to stop,” she said.

The world will be losing a gem on August 10. Maggie is a warrior woman for all that she has endured. She is a survivor through and through. I have seen grace, generosity of spirit, love, and even a sense of humor through all of this.

Is Maggie beyond treatment without a doubt? I will wonder about that for the rest of my life as I remember my sweet friend and all that she embodied.

Maggie’s partner Brian, the love of her life, passed in 2008. She will be survived by two children and five grandchildren.

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. 

If you are in crisis and live in Canada, help is available by calling the Canada Suicide Prevention Service at 833-456-4566. If you live in the US, help is available by calling the 988 Suicide & Crisis Lifeline (formerly know as the National Suicide Prevention Lifeline) at 988 or 1-800-273-8255 (TALK). You can also call 911 for immediate help.