Category: COVID-19

Hope for post-viral illnesses

Estimates of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) sufferers in the US range from 836,000 to 2,500,000. From 1,000,000 to 3,000,000 people in the US suffer from POTS (Postural Orthostatic Tachycardia Syndrome). Some people may be diagnosed with both syndromes.

So far, more than 40% of adults in the US have reported having COVID-19 in the past. Of those, 19% are still having symptoms of “long COVID.” Thus, 1 in 13 (or 7.5%) of US adults have “long COVID.” There are some symptom similarities among sufferers of ME/CFS, POTS, and “long COVID.”

Our son Rob is a self-taught expert on POTS and ME/CFS. His symptoms are consistent with both ME/CFS and POTS. He reads everything about these syndromes. For the first time in over a decade, he has hope that treatments may be discovered. COVID-19 has led to an avalanche of new research.

For about a year, he has followed a project by Germany’s University Hospital Erlangen in Bavaria and the Max Planck Institute for the Physics of Light. They are developing a drug named BC 007. Rob was encouraged by their Thursday report. (I’ve posted an English translation on a blog page here.)

The focus is autoantibodies found in ME/CFS sufferers and “long COVID” sufferers. So far, it’s just one patient, but it’s a sign of hope. Here’s a hopeful excerpt about her progress:

…her symptoms improved over many months: First, cognitive symptoms such as brain fog, poor concentration and limited short-term memory decreased, and later also noise and light sensitivity. Fatigue, muscle weakness, and POTS—the postural orthostatic tachycardia syndrome that causes tachycardia and dizziness in ME/CFS sufferers when they stand up—also decreased over several months. Driven by this initial success, the Erlangen researchers want to review both the diagnostics and the therapeutic approach in a larger number of patients with ME/CFS.

From “Berlin Cures…? Could BC 007 Help With Long COVID and ME/CFS?” by Cort Johnson, HealthRising, December 30, 2021

Healing

For those with serious illness, help comes through some degree of healing. For an amputee, healing may be a prosthetic device. For some conditions, help may be a partial healing or a relief of symptoms, even if only temporary. The word salvation literally means “healing,” or “wholeness.”

Our son Rob had viral encephalitis as an infant. He began showing serious symptoms in his early 20s that were mis-diagnosed as sleep apnea. The diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) led us to the Mayo Clinic in 2013 for a week of tests at their Rochester, Minnesota campus.

Little was known then about POTS. Rob puts all his available energy into medical research. POTS is akin to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), the subject of a recent Freakonomics M.D. podcast with Dr. Bapu Jena, “Could Long Covid Help Treat Other Chronic Illnesses?

For those with ME/CFS, one answer to “From whence does your help come?” may be researchers like Ron Davis, who is interviewed by Jena. Public awareness (and funding) is up because Long Covid is causing an exponential growth of sufferers with symptoms like Rob’s.

Another story of perseverance is “The Secret Life of a Martha Graham Dancer with Heidi from Alabama,” (episode 54) available from The POTScast.

From “An update from Dr. Ron Davis: improving diagnostic tools for ME/CFS.” The Open Medicine Foundation, November 16, 2021

“We’re not very good at public health”

Firing Line with Margaret Hoover is excellent journalism, including a 1/14/2022 interview with Fareed Zakaria about lessons from the pandemic, democracy in America and what to do about Ukraine.

As an immigrant to the US from India, Zakaria has great appreciation for his adopted country and a healthy objectivity. Hoover asked about American “exceptionalism.” He named several aspects of the US that are exceptionally good. Then, “I’m saying this with an immigrant’s love for the country. There’s a danger when you start to think that you are special and unique…. you don’t learn as much. … You don’t say, “How do other people do this? What can I learn?”

He said, “We’re not very good at public health.” Our system is “designed for private health. … “We have an amazingly innovative private sector. … this public private partnership is a tried and tested one. … time and time again the government has stepped in. But not to run things, not to administer things. …our system works best when the government pays and the private sector executes.”

Hoover asked about his becoming more progressive over the years. Zakaria (now 57) said as a young immigrant, “I liked Ronald Reagan’s muscular anti-communism. And that was the defining issue. I was always socially very liberal….. The central issues were communism and free markets.” He said, “I have changed a certain amount. I would argue that the right has changed more than I have.”

Tomorrow: How parties evolve.

A 30-minute video and transcript are available from PBS’ Firing Line with Margaret Hoover

Missing Church

Cousin Ed sent me an AP article,”‘Go in peace’: US church founded in 1800 holds last service,” about a Presbyterian church in Pennsylvania. It’s a story made more familiar by the COVID pandemic. Beginning with this post, I’ll share some memories, experiences, and hopes about Church.

COVID brought an unwelcome sabbatical from in-person worship. We’re just now getting back into that rhythm. With the Omicron variant, I was relieved to see a supply of masks and a “masks required” sign on the church door. Our pastor thanks everyone for “masking up” for the health of the community.

We arrived at Christmas Eve communion during the prelude. We found a seat near the front of the crowded sanctuary. I felt overwhelming gratitude for every detail of the service. Great worship is an inspired art. It doesn’t just “happen.” During the Christmas hymns, I was teary and choked up.

At many points, especially as we lifted our little candles that brought light to the darkened sanctuary, I realized how much I’ve missed in-person worship.

This brief YouTube video of “Silent Night,” performed by a virtual choir, is an example of the inspired creativity that has helped congregations make it through the COVID pandemic

The long haul

The underbelly of this pandemic includes the long-term, residual impact for a group of people known as “long haulers.” From the Harvard Medical School:

Long haulers are people who have not fully recovered from COVID-19 weeks or even months after first experiencing symptoms. Some long haulers experience continuous symptoms for weeks or months, while others feel better for weeks, then relapse with old or new symptoms.”

Son Rob, who’s been dealing with chronic fatigue for over a decade, is part of the ME/CFS community. He spends most of his limited energy doing medical research. Earlier this morning, Rob sent me a link to a very helpful article by Cort Johnson in Health Rising, along with this summary:

“...technologies are being used in COVID-19 and long-COVID research that would have taken years, if not decades, to show up in chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) research.  They’re accelerating insights into potentially critical issues in these diseases.  None is more critical – particularly in ME/CFS – than the cause of the fatigue and lack of energy in these diseases.

Long COVID, then, is doing what people with ME/CFS/FM wanted it to do. It’s bringing new technologies and new researchers to the study of post-infectious disease states, as well as an increased focus on factors that we already believe may play a significant role in these diseases, and is already providing potential insights into them.”

From “What doctors wish patients knew about long COVID,” by Sara Berg, American Medical Association, October 22, 2021

Medicine’s own long-haulers

An earlier post and a dedicated blog page introduced son Rob and his experience with ME/CFS and POTS. A recent article by Ed Yong in The Atlantic describes how some COVID long-haulers have been dismissed by medical professionals. What’s different about this article is that the long-haulers are themselves medical professionals. Yong interviewed over a dozen long-haulers in the US and the UK.

I’ll re-read it today as part of my Thanksgiving observance. Health, our most precious gift, is too easily taken for granted–until it is lost. From Ed Yong’s article:

“Most told me that they were shocked at how quickly they had been dismissed by their peers.”

“…these problems are familiar to people who have myalgic encephalomyelitis, the debilitating condition that’s also called chronic fatigue syndrome.”

“Amy Small, a general practitioner based in Lothian, Scotland … could barely raise a glass to her mouth. ‘It was a whole level of bodily dysfunction that I didn’t know could happen until I experienced it myself,’ she said, and it helped her ‘understand what so many of my patients had experienced for years.'”

From “Even Health-Care Workers With Long COVID Are Being Dismissed,” by Ed Yong, The Atlantic, November 24, 2021

It is well

After a 15-month absence, we attended an in-person worship service in June, just before the Delta variant surged. After another 5-month absence, we attended an in-person worship service on Sunday.

No offering plates were passed. We were invited to leave a gift at the altar or in a plate on our way out. Or, we could give via text or by scanning the QR code on the bulletin. It was clean and creative.

“Please do not sit on this pew” signs graced alternating pews. I appreciated the precautions. Everyone was masked. The choir was amazing. How can they sound that good wearing masks? An outdoor lunch followed. It was good to be together.

During one of the bleak moments of the pandemic, I watched/heard a rendition of “It is Well with My Soul,” by a group of Nashville musicians. I enjoyed it again last night, compliments of the Nashville Tennessean.

From “Top worship songs during COVID-19 crisis according to one church technology company,” by Holly Meyer, Nashville Tennessean, June 3, 2020

Slowdown

We’re halfway through year 2 of this pandemic. Humans have an innate capacity to learn from tragedy, and I’ve been thinking about what we’ve learned in this difficult, stressful, tragic era.

We are connected. A friend’s yarn shop has low inventory as she waits for yarn to be unloaded from ships backed up at west coast ports. Tech companies had relied on the cargo sections of international passenger flights to deliver critical components. The virus curtailed international air travel.

Slowdowns in the supply chain have created long wait times, as manufacturers try to secure necessary parts for their workers. The big snow in Texas a few months created a slowdown in making cushions for campers.

I’ve become more patient, unintentionally. Life has become simpler, grudgingly. As others struggle with COVID and its ripples, I’m more understanding, reluctantly. I’ve realized at a deeper level that patience, simplicity and compassion don’t come easily or naturally–acquired tastes during a slowdown.

From “Pandemic bookends: Jewelry family has operated through several slowdowns,” by Kaylea Hutson-Miller, The Joplin Globe, June 13, 2020

Remembering April 2020

The coronavirus pandemic has changed us in ways that are obvious and part of our everyday consciousness. It has changed us in some subtle, not-so-obvious ways, too. In the next several posts I’ll take a peek inside these new realities, especially looking at some positive changes.

I spent the entire month of April 2020 with my aunt, mainly to keep her out of the grocery store. With her, I watched the local TV news each day, a totally new experience for me. I felt part of a local community. That community, though “virtual,” was reassuring.

Recent posts about grief helped me reflect on April 2020. I wanted to deny the virus reality, even as I saw TV images of New York City taking it on the chin. Denial was all around. Virus denial was becoming institutionalized by some on Fox News and in the GOP.

This denial erupted into anger around closures, masking and distancing. Families, friends, churches, businesses, governments began to “bargain,” or take sides. Cooler heads negotiated. It was depressing to face reality, but this was the fastest way to acceptance.

A local Knoxville TV station brought a familiar face out of retirement to record some encouraging public service announcements. With confidence he said, “We can do this.”

Yesterday, I read (for the first time) George Packer’s April 2020 cover story in The Atlantic, “How to Destroy a Government: The President Is Winning His War on American Institutions.” It was jarring to read it in light of the last 18 months.

Grief work

On Tuesday, Dr. Kirby Bland, Professor Emeritus of Surgery at UAB, described the current state of COVID-19 in Alabama. His message: Get vaccinated. Urge your family, friends and neighbors to get vaccinated. Wear a mask (preferably N-95) in public. Alabama’s vaccination rate is 41%. Only West Virginia’s is lower. This isn’t our finest hour.

Yesterday, I read the obituary of Candice Ayers, 66. Her family’s grief made me realize that for 18 months, the world has been in grief. We have been visited by an existential, worldwide threat. The end is not yet in sight. COVID-19 grief is global. It is also deeply personal.

I haven’t done the personal grief work I need to do. As a society, we haven’t done the corporate grief work we need to do. Grief work will be the theme for the next several posts. A good place to begin is Elisabeth Kübler-Ross (1926-2004).

Photo of Elisabeth Kübler-Ross, from the Stanford Center for Biomedical Ethics