LONG COVID HEALING RESOURCES ❤️🩹
techniques from Mayo Clinic's program that changed my life
Hello friends!
THANK YOU FOR RECEIVING THE LOST VOICE with so much love. The book release week was one of the happiest of my life.
Signing books at The Strand in NYC - photo by Benny Harps
in conversation with Sasha Spielberg - photo by Benny Harps
In the wake of this Chicago NPR story that aired about the book, I received an outpouring of Long COVID stories from my extended community.
20 million Americans have been diagnosed with Long COVID so far and over 1 million Americans were forced out of their careers by Long Covid the same way that I was.
Because so many people have reached out, I have decided to share my experience of Long COVID plus the Mayo Clinic's treatment program, which has dramatically improved my well-being. I want to make this ‘insider’ information accessible to those who do not have access or resources to participate in similar programs.
Before the pandemic, I considered my body to be like a perfect machine. I used to brag that I never got sick and hadn’t thrown up in 20 years.
I had a vast vocal range and belted out high, big choruses like this:
In 2018 and 2019, I played 2.5 hour sets multiple nights a week as a touring member of Vampire Weekend. My fitness tracker told me that the amount of dancing I did during each show was the equivalent of running 5 miles.
That festival day was 100*. Look how sweaty!
I often walked 10-15 miles around European cities on days off on tour. I biked 20+ miles easily. I swam across lakes. I hiked to the top of Yosemite Falls (2,000 foot elevation) multiple times, bouncing up switchbacks like some kind of reverse slinky.
2019 with my friend Bianca - a half-day trek up Yosemite Falls
My first bout of Covid in 2020 knocked out my singing voice, which I wrote about extensively in my book. But even as my singing voice flickered and tremored, the rest of my body functioned as normal for the next two years. Then, with subsequent infections in 2022 and 2023, I began to experience physical incapacitation that would’ve been unfathomable to my former self.
In the summer of 2023, I had two back-to-back medical emergencies related to my thyroid and heart function, having never had thyroid or heart issues before. I had to move back into my childhood home for two months to be cared for by my mom because I was too weak to care for myself. Arriving home, I could barely walk up or down the stairs, so she delivered every meal I ate.
After a summer of medical care and deep rest, I had recovered enough to relocate to the Catskills of New York, which I chose intuitively, sensing that my body would heal there. I settled into a quiet cabin by a creek and officially quit my career as a touring musician to focus on recovery.
By December of 2024, after my 3rd infection, physical fatigue made it feel like I was wearing a lead bodysuit. Lifting my arms to shampoo my hair felt like a herculean task. If I did any intense physical exertion, I’d wake up the next day with fever and chills and flu-like symptoms. Even gentle, flat walks with friend would take 2-3 days to recover. Brain fog often made me feel disoriented while driving the familiar route to the grocery store and a wired-tired left me constantly on edge and exhausted but unable to sleep.
In January of 2024, I was accepted into Mayo Clinic’s Long COVID treatment program and my Dad chaperoned me there. Mayo Clinic is the #1 diagnostic hospital in the country and I was preparing myself to be diagnosed with a brain tumor because I assumed there was no way Long COVID could be as bad as what I was experiencing. I was, indeed, diagnosed with Post-Covid syndrome. For many like me, it manifests like Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Dr Ryan Hurt, the head of the Long Covid research program, had treated 3,000 patients by then and shared that many others had experienced similarly shocking physical emergencies, heart and lung issues, etc. Many patients had experienced voice changes, though none had been professional singers.
Shoutout to my Dad, a person of many love languages, one of which is taking detailed notes on a legal yellow pad. Here are the ones from our appointment:
According to Mayo Clinic’s research, the main crux of the Long Covid problem is that, following Covid, dead viral particles remain in the body. In some people, their body immune system overreacts in fighting the dead particles as though it is an ongoing active infection. This causes inflammation in the brain and throughout the body. (Brain inflammation is measured via a PET scan.) Additional theories about what causes LC:
From Mayo Clinic’s website
When the body’s immune system overworks, it often causes dysregulation of the autonomic nervous system, also known as dysautonomia. The autonomic nervous system regulates heart rate, blood pressure, digestion, excretion, perspiration, temperature regulation, pupil dilation, circulation, and respiration among others. The ANS is responsible for maintaining homeostasis in the body. When there is dysautonomia, the fight or flight response is active in a near-constant state, which causes subsequent fatigue.
Dr Hurt shared anecdotally that 80% of Long Covid patients were women in their 30s, 40s and 50s. The NIH says that women are 3x as likely to develop LC.
Of the 3,000 Long Covid syndrome patients treated by Mayo, 10% of those patients healed completely. (They have returned to pre-Covid activity levels and quality of life.) However, NEARLY ALL HAVE REPORTED DRAMATIC IMPROVEMENTS after completing the 12 week program. He said that most people had recovered 60-70% of their former health levels.
Here is Mayo Clinic’s Long Covid Treatment Plan:
(1) stimulate the Vagus nerve using a TruVaga device; 2 minutes, 3 times a day. Calming the Vagus nerve helps regulate the autonomic nervous system to treat dysautonomia.
(2) take Guanfacine (there is a Yale showing the benefits) -- .5 mg x 2 times day -- perhaps increasing later to a full pill (1mg) x 2 a day. Guanfacine is an ADHD *non-stimulant* medication often used to treat children. It has shown benefits in calming the nervous systems of patients with PTSD. This reconnects the neuro-receptors in the brain, combats inflammation and may relieve neurological fatigue.
(3) take Nancy's Kefir yogurt -- 1 cup a day. Clears dead viral particles from the body via the intestinal tract. They believe this is the best pre and pro biotic on the market — a covid prevention powerhouse.
(4) L'arginine -- 2000 mg x 2 times a day (comes in 500 mg capsules) -- fosters blood pressure health, and widens the blood vessels so that dead virus stuck in blood vessel linings can be cleared out.
(5) Vitamin C -- 500 mg x 2 times a day (works in tandem with L’arginine to widen the blood vessels for dead virus to be cleared)
(6) Metagenics fish oil -- 4 capsules a day (as an anti-inflammatory)
(7) NAC (N-Acetyl Cysteine) -- 600 mg once a day -- an anti-inflammatory that helps the brain.
(8) LOW INFLAMMATION DIET (I alternate between MEDITERRANEAN DIET (less restrictive) and AUTOIMMUNE PROTOCOL (a bit more restrictive). Here’s a great cookbook.
(9) NO EXERCISE(!!!!!!!!) beyond stretching until the body no longer experiences post-exertional malaise.
Once Post-Exertional Malaise is no longer a symptom, slowly practice a GRADED EXERCISE PROGRAM to ease your way back up to physical activity.
Most physical activity will be N.E.A.T. (Non-Exercise Activity Thermogenesis) which encompasses all non intentional exercise — activities like walking, standing, cleaning, gardening, taking the stairs.
(10) ADDITIONAL OPTION: After 12 weeks, if the patient isn’t experiencing enough symptom relief, they can try LOW DOSE NALTREXONE. After a few weeks, LDN did dramatically improve my energy, but it also gave me incredibly weird dreams and often disrupted my sleep. (In one dream, I drifted through a dreamscape of endless beaches while riding on the back of a miniature crab. Crustacean transportation? Guess it could be worse.) I’ve gone on and off LDN in the last 15 months.
Cheers
Additional lifestyle tools:
ENERGY PACING Rest BEFORE you are tired to avoid crashing. Apps like Visible can help track your energy levels so that you don’t go over your energy limit. (As a reminder, NO EXERCISE beyond stretching or gentle walks until Post-Exertional Malaise symptoms disappear.)
YOGA NIDRA - Non-Sleep Deep Rest (NSDR) is a relaxation technique that induces deep relaxation without letting you falling asleep. I was advised to clean up my sleep hygiene by quitting napping so that I’d sleep more deeply at night, so this was a great alternative. It combines progressive muscle relaxation and mindfulness. I recommend Ally Boothroyd. She has free ones on Youtube.
MENTAL AND EMOTIONAL SELF CARE:
BRAIN RETRAINING leverages neuroplasticity to reshape brain function, helping people break free from the cycle of symptom-induced stress. Stressing about symptoms naturally amplifies the symptoms and the vicious cycle spirals out of control. This program uses Cognitive Behavioral Theory and other meditative practices to teach patients how to re-frame their relationship with illness. I highly recommend the Gupta Brain Retraining Program. IT IS LIFE CHANGING! TRULY LIFE CHANGING! I talked about this during my appearance on the Voices of Long Covid podcast.
Thank Goodness I already loved meditating because now it’s a 2-4 hour/day activity.
SETTING FIRM AND LOVING BOUNDARIES is important for everyone, but crucial for those with chronic illness:
“I’m over my energy limit for the day, so I’ll reply to this the next time I have energy.”
“I’m not able to engage socially with my wider circle at the moment, as I’m living with limited energy, but I’d love to see you when I have the capacity to do so.”
“I’m not able to participate in (X), so could we modify by doing (Y)?” (If you can’t travel to attend a friend’s wedding, could someone facetime you in to watch the ceremony? etc)
Since Long COVID is essentially a nervous system disease, people can have extreme physical reactions to loud sound and sensory stimulation. It’s strange to be allergic to the thing I loved doing my whole life, but unfortunately I can’t really attend full-band live concerts anymore without experiencing a major crash afterward.
My new life requires deep rootedness and about ten times as much rest and repair after intellectual, social, or physical activity as I used to need. But I am able to teach workshops, to write and publish, to exercise occasionally, to take mountain walks, to cook great meals and make love and read books and do all the other things that make life worth living. With setbacks, I now know how to return to baseline by using the tools. I recently heard someone say that grief is like a stone that remains the same size, but carrying the grief becomes easier because we become stronger. As I continue to broaden the spectrum of what brings me joy and meaning each day, I’ve built a life I love within the constraints of Long COVID.
With love & solidarity,
Greta Morgan
Order THE LOST VOICE BOOK
Did you have issues with MCAS? Thanks for sharing your story. Ive been bedbound with LC since march 2020.
So helpful & thoughtfully written/shared, Greta ❤️🩹❤️🧘