Category: Health

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

Legacy of Hope

Our son-in-law Michael died in June after an April 2020 lung transplant. He had 16 good months without supplemental oxygen, but he was up against a genetic condition called short telomere syndrome. His last several months involved numerous hospitalizations. This is the first time I’ve mentioned Michael’s death, due to our daughter’s concern about identity theft and the normal delay in securing a death certificate when a body has been donated for medical research.

Michael knew the rejection couldn’t be reversed, but he continued to fight until one week before his death, when he finally opted for palliative care. He had fought for time and for other transplant patients who benefited from the transplant team’s learning from Michael’s response to new treatments. Many years ago, he made the decision to donate his body to science. He benefited from a young man’s decision to be an organ donor and he wanted to pay it forward.

Each state has a process for donors. COVID-19 has changed some of the protocols. Two resources are the Anatomical Donor Program at UAB’s Heersink School of Medicine (205-934-4494) and Legacy of Hope, Alabama’s Organ & Tissue Donation Alliance (800-252-3677). In the US, 114,000 people are on a waiting list for a lifesaving transplant. Up to eight lives can be saved by a single organ donor, and up to 100 lives can be improved by a single tissue donor. It’s truly a way to leave a legacy of hope.

From Legacy of Hope

Hope

During a Friday morning conversation with friends about ever present signs of hope amid relentlessly depressing news, I decided to devote some posts to hope. In Friday’s conversation, one of my friends cited an Ian Millhiser tweet via Heather Cox Richardson: “This was a good week for the United States of America and I may be coming down with a case of The Hope.”

On Friday afternoon I learned about Select Specialty, a network of hospitals with a location on the Brookwood campus in Birmingham, where a long-time friend is a patient. The trademarked words “Let Hope Thrive” are appropriate for an extended care facility for patients with serious illness. As one staff member said, “Slow and steady wins the race.”

Let’s begin this focus on hope with a reminder that life is a marathon, not a sprint. My goal is to be more diligent about looking for signs of hope, especially when evidence is to the contrary. The human community has a deep reservoir of hope at our disposal and sometimes it’s necessary to remind each other about the undying hope that is within us. How can I, you, we embody hope today?

From a virtual tour of Select Specialty Hospital, Birmingham

Essentially the same

I gained a new perspective yesterday about memory loss when I took my aunt for a post-surgery exam. We had multiple conversations about family members. She spoke about her mom in the present tense and minutes later talked about her mom’s funeral. My aunt has lost the relativity of time but maybe she’s gaining something the ancients described as a narrowing of the “veil” that separates the living from the departed. On a 2011 study trip to Ireland, our guide took us to some “thin” places.

I experienced a powerful continuity in my aunt’s 91-year-old brain. She thought the doctor’s office was on the college campus she and her sister Grace attended. In that moment, the medical facility provided an atmosphere for her to express the meaning of their relationship, which transcends time and space. Details become more dim, but the reality of her formative relationships remains essentially the same. In the big scheme of things, isn’t essence more important than details?

Yesterday’s excursion reminded me of my friend Stephen’s recent comment that artificial intelligence pales in comparison with the human brain. From a paper by Jiawei Zhang: On average, the human brain contains about 100 billion neurons and many more neuoglia which serve and support the neurons. Each neuron may be connected to up to 10,000 other neurons, passing signals to each other via as many as 1,000 trillion synapses. Maybe our synapses mature in ways we youngsters cannot yet appreciate.

Could a brain that appears impaired operate in a different plane, look at reality from a different perspective, on a wavelength we can’t quite grasp. Two years ago, while sleeping in my aunt’s guest bedroom, she knocked on the door and said, “Midge, are you in there?” Midge (1924-2007) was her sister and my mother. We talked for a few minutes and I suggested that she may have been dreaming about Midge. The ancients viewed dreams as windows for peering through the thin “veil.”

From “What Are Thin Places?,” Thin Places Mystical Tours

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

The lens of hope

From “Unhinged,” Robert B. Hubbell’s July 13 installment of Today’s Edition Newsletter:

…this newsletter’s purpose is to synthesize important news “through the lens of hope” while remaining firmly rooted in reality….

...many people feel … the news in general …. is too much, too negative, too divisive, and too dire. …

Amanda Ripley … is a journalist who stopped reading the news six years ago. … she is not alone. America ranks near the top among world nations in “news avoidance”–4 in 10 Americans “sometimes or often” avoid contact with the news. The reasons are many, but this description resonated with me:

“As Krista Tippett … puts it, ‘I don’t … think we are equipped, physiologically or mentally, to be delivered catastrophic and confusing news and pictures, 24/7. We are analog creatures in a digital world.'”

Hubbell concludes: “The news is the news; it isn’t you, and it isn’t your destiny. You get to decide how you react to the news, whether you read it or not. Choose hope; choose perseverance; choose to lead others by example.”

Living the Questions,” from Krista Tippett’s podcast “On Being”

Healers

This morning, respectful gratitude for healers. A compassionate nurse called Monday night to say Aunt Margaret was hospitalized after a fall, likely fracturing a hip bone. A jovial orthopedic surgeon called Tuesday while I traveled to confirm the break and recommend a hip replacement. Overworked nurses were patient with their patient’s inability to remember and with her sundown syndrome.

Several healers were volunteers who staffed waiting rooms, reception areas and a library. A friendly motel clerk provided a 15% discount when I replied to “What brings you to the Secret City?” Social workers, food service staff, hospital security, and a gentle anesthesiologist transformed what could have seemed like a fleeting, mindless, rote process into an experience of genuine, personalized care.

When she was fidgety, I said, “I think Aunt Margaret needs some of Aunt Bee’s elixer.” Her nurse gave her towels and sheets to fold, calming her as they discussed various folding techniques. Less than 48 hours after surgery, she was transported to rehab. When her movement alarm was activated, the staff found her walking around on her own, earning her a seat in the hall across from the nurses’ station.

From “Clara Barton,” edited by Debra Michals, Women’s History Museum

Natural rights

George Will, in The Conservative Sensibility, says the Declaration of Independence and the Constitution “should be construed in the bright light cast by the Declaration’s affirmation of natural rights.” And, “a government constructed on the assumptions of natural rights must be limited government. The natural rights theory is that individuals in the state of nature possess rights that pre-exist government; that government is created for the limited purpose of securing those rights….” (p. xxix)

Will espouses (p. xxiv) “the exercise of natural rights within a spacious zone of personal sovereignty guaranteed by governments instituted to serve as guarantors of those rights.” I would include in that “spacious zone” a woman’s reproductive self-determination among the Declaration’s “self-evident” truths and “inalienable rights.”

Justice Robert Jackson said (p. xxiii), “The very purpose of a Bill of Rights was to withdraw certain subjects from the vicissitudes of political controversy, to place them beyond the reach of majorities and officials, and to establish them as legal principles to be applied by the courts. …Fundamental rights may not be submitted to vote; they depend on the outcome of no elections.”

Has Dobbs v. Jackson reduced the “spacious zone of personal sovereignty” for American women? Does Justice Clarence Thomas’ concurring opinion foreshadow further reductions in that “spacious zone?” Is this really a “conservative” decision, or does it launch a new era of intrusive government?

From “Supreme Court’s ruling overturning Roe v. Wade ‘will have huge political ramifications,’” by Sarah Grucza, Harvard Kennedy School, June 24, 2022

Sifting through the law for grace

In ecclesial times, theology students were first in university processionals. By 1976, the commencement procession was alphabetical. So, I was in one of Emory’s rear seats to hear Justice Harry Blackmun’s commencement speech. He is known also for writing the 1973 Roe v. Wade majority opinion.

Roe critics include Susan E. Wills’ “Ten Legal Reasons to Reject Roe” for the US Conference of Catholic Bishops in 2003, and Justice Samuel Alito’s majority opinion in Dobbs v. Jackson. Among Dobbs critics is Ian Millhiser, who wrote “The end of Roe v. Wade, explained,” in Vox.

Roe and Dobbs will be remembered as two markers on a long and winding road toward peace around healthcare for women who face a difficult and sometimes excruciating ethical decision. I concur with the United Methodist Social Principles and Stephanie York Arnold’s personal statement.

Here’s a bell hooks quote from All About Love, and Jackie DeShannon’s “Put a Little Love in Your Heart.”

Love heals. When we are wounded in the place where we would know love, it is difficult to imagine that love really has the power to change everything. No matter what has happened in our past, when we open our hearts to love we can live as if born again, not forgetting the past but seeing it in a new way, letting it live inside us in a new way. We go forward with the fresh insight that the past can no longer hurt us. Or if our past was one in which we were loved, we know that no matter the occasional presence of suffering in our lives we will return always to remembered calm and bliss. Mindful remembering lets us put the broken bits and pieces of our hearts together again. This is the way healing begins.

From “Jackie DeShannon’s ‘Put a Little Love in Your Heart,'” via YouTube

The pursuit of ethics

This is post #1000. The hard part is deciding what not to write about. Today’s world presents plenty of material, such as yesterday’s reversal of Roe v. Wade. Who are today’s great ethicists? Where does one go to learn about ethics? The Reputational Ranking of Philosophy PhD Programs has Harvard and M.I.T. tied for 9th place. The pursuit of ethics deserves a generous share of our best and brightest.

Circa 1975, I took an interdisciplinary course in Biomedical Ethics, with students and faculty from Emory University’s Schools of Medicine, Law and Theology. One issue was who gets kidney dialysis when machines were few. A medical professor said, “The one most impactful decision for renal health in America would be for McDonalds to put less salt on their french fries.”

Among the issues we discussed were organ transplants, Karen Ann Quinlan’s case, in vitro fertilization, and Roe v. Wade. Abortion remains our most difficult biomedical issue. I agree with those who say abortion should be legal and rare. I agree with the United Methodist position on this issue, beautifully and powerfully expressed by my pastor, Stephanie York Arnold.

From “The Supreme Court’s majority and dissent opinions on Dobbs reveal a massive schism,” by Bill Chappell and Nell Clark, NPR, June 24, 2022