Long Haul COVID Suffers! 20+Years as a Long Hauler: Better Living with Chronic Fatigue (CFS/ME) through Meditation and Yoga

Update 3/30/22: If you missed the condescending reply to my Long Haul COVID story from Dr. Meschia of the Mayo Clinic on Minnesota Public Radio, (MPR host: Angela Davis) regarding yoga and meditation, it’s HERE. (24-min. mark). The research with which Dr. Meschia was unfamiliar is HERE.

Dear Doctor Meschia et al: Why not just say you don’t know or haven’t read the studies; no need to disregard a valid modality because you haven’t read the articles! Want to go out on a limb? Ask your patients to share the information.

Please visit the Alzheimer’s Research and Prevention Foundation for info about keeping your brain healthy and resilient. There are many Alzheimer’s groups out there, but this one focuses on true prevention which is not always in the wheelhouse of Western docs.

According to the Mayo Clinic Website (note the comments in bold are mine):

Chronic Fatigue Syndrome (CFS/ME) is a complicated disorder characterized by extreme fatigue that lasts for at least six months (or 20 years) and that can’t be fully explained by an underlying medical condition. The fatigue worsens with physical or mental activity but doesn’t improve with rest.

Other characteristic symptoms include:

  • Sleep that isn’t refreshing–YES, DAILY!
  • Difficulties with memory, focus, and concentration–YAH!
  • Dizziness that worsens with moving from lying down or sitting to standing —YOU BETCHA!
  • Doctors who have no answers after  10 minutes on your case or any idea as to your past accomplishments, saying “maybe you’re a little depressed.”

The condition is typically abbreviated as CFS/ME. The most recent term proposed is systemic exertional intolerance disease (SEID). I will stick to CFS/ME.

The cause of CFS/ME is unknown, although there are many theories — ranging from viral infections to psychological stress. Some experts believe chronic fatigue syndrome might be triggered by a combination of factors. I suspect a severe case of viral pneumonia in Japan complicated by salmonella on Bali (travel isn’t all glamour ;))

There’s no single test to confirm a diagnosis of CFS/ME. You may need a variety of medical tests to rule out other health problems that have similar symptoms–and spend all your time, money, and sanity schlepping around from doc to doc, dept to dept. Treatment for CFS/ME focuses on improving symptoms. You will likely be encouraged to take an anti-depressant which feels like insult added to injury.

While Long Haul COVID and general COVID-19 is a terrible tragedy, for the first time, I don’t feel so alone. Suddenly, the news is rife with stories of people suffering from Long Haul COVID who are experiencing many of the same CFS/ME symptoms I’ve struggled to manage for decades. It’s hard to watch: many of them are young, like I was, debilitated by fatigue in their prime on the cusp of great things: careers, marriages, starting a family. Many of these people will end up on disability, as holding down a full-time job may become impossible.

When I say “debilitating fatigue” what do I mean? The kind of fatigue that prevents you from hopping  a train to live your dream of seeing the finals at Wimbledon. It’s a kind of tired that leaves you stranded in the dairy aisle because you don’t know how you’re going to carry the milk all the way to the front of the store and back to your car. If you do push through it, you know it will mean an hour’s nap once you get home. It’s the kind of fatigue that seems so irrational to your friends and family, they start to lose their grip right along with you. You’re forced to say “no” to so much that pretty soon the invitations stop coming altogether.

Approximately 1-2 million Americans suffer from CFS/ME. According to the article “The Tragedy of the Post-COVID ‘Long Haulers'” (Health.Harvard.edu) that number could double in the next two years due to the COVID “Long Haulers” / “Long Haul COVID” sufferers. Trust me when I say, our healthcare system IS NOT ready for this. My heart breaks knowing so little has been accomplished on the CFS/ME front in the past decades and the frustrations the afflicted will face. 

Why so little progress? First, many sufferers are women. All the Infectious Disease and Internal Medicine docs I saw were men. What they had in common: terrible listeners, very “busy and important.” While I thought that had changed, as Mayo Clinic Dr. Meschia brilliantly illustrated in the NPR program with Angela Davis, listening is still a major problem. Secondly, CFS/ME patients are lousy advocates. Why? They’re TOO TIRED!  It may take half a day to get ready for an appointment and another half day’s nap to recover. All that to hear the same BS and see the same lab-coat shoulder shrugs.

In one of my final appointments, the doc tried to write me a script for Prozac after 5 mins. My husband started cross-examining: “What’s the “end game”–is she on it forever? Why do you think she’s depressed?” To this day, we’re not sure if we stormed out or were thrown out of his office–worse yet, that Doctor was on the Board of a CFS Association in Minnesota! What about the people who don’t have a partner to bring with them to appointments?

Luckily, somewhere along the way, when I still had some energy, I had taken a few yoga classes. I found myself in a situation where my energy improved somewhat and I could commit to a weekly yoga class. It became clear to me that I got a hella lot more out of yoga classes than doctor appointments. Slowly, my health improved, albeit in fits and starts.

Remember, the “C” in CFS is for “Chronic.” It never goes away; it’s a condition that has to be “managed.” I basically fired all my doctors and started managing it myself, primarily through yoga–but not just any yoga.

One of the most frustrating symptoms for a former athlete is the post-exercise malaise which is perhaps why experts are starting to refer to it as systemic exertional intolerance (SEID). Luckily my first teacher was a classically trained yogi and Zen Buddhist in Singapore. She was in her 60’s and no-nonsense. She did a lot of seated meditation and it showed in her approach. She knew that the “exercises” were to be done as meditations, not gymnastical performances. There was plenty of time to phase in and out of the pose, downshift if need be, and integrate between poses. No music or mirrors–she would have disdained such distractions. The point was to reside in your body, not let your mind drift, and most importantly, accept how it was for you that day. No comparisons to last week or last year. You were forced to confront the silence and to deal with the thoughts in your head, the sensations in your body.

When I got back to the States, I was shocked at what was passing for “yoga” and couldn’t find a class. I finally came across a Kripalu teacher on Cape Cod. If you would’ve told me when I could barely shower that I’d enroll in a 1-month residential yoga training of all things yoga from 6 am to 10 pm, I wouldn’t have dared to dream. I became certified in 2001. Confession: there was a break in the afternoon, so I could catch a nap; otherwise, I don’t think I would have made it. Coffee was banned but they had really strong tea.

I started teaching yoga full-time and never really went back to my “professional” pre-yoga life. Turns out, CFS/ME had taught me a lot. First and foremost, you have to have a strong purpose, a mission for your life that, against all odds, gets you out of bed in the morning. My first mission was “heal thyself.” Accepting that I’d maybe be lucky to reclaim 80% of my previous energy was a big part of that.

The mission is never over, as I don’t dare grow complacent. I’m always trying out the latest “life hacks” to boost my energy and clarity; and, I’ve even invented a few on my own. I stay inside my “energy envelope” as much as possible. I relish sharing what I’ve learned with others, especially those with similar symptoms who might be dealing with anything from Lyme disease to fibromyalgia to Long Haul Covid to general stress and burnout.  I have a lot more patience and empathy for sick people and the difficulties of aging.

A good shot of natural adrenaline does wonders. Travel has always been my jam. I crave the buzz of being out of my comfort zone–a buzz I used to enjoy as a lifestyle pre-CFS. Now, I get to share some of my favorite destinations with my students on yoga retreats which I plan.  Yes, I do get nervous contemplating how people are entrusting me with their vacations, some of the most important days of their year; but, it’s the good kind of nervous as those wee butterflies keep me energized.

I also treat myself to the occasional trip to Japan to re-immerse myself in the language and re-activate that part of my brain. You just don’t have time to be tired in Tokyo: 30 million people in an energetic vortex where the ancient and futuristic intersect. I throw myself into the mayhem, feed off the flow, and go-go-go. I do “pay” for it though when I return, but to me, it’s worth it. 

Conversely, I’ve learned to protect my energy and avoid things that drain me. I view energy as a finite quantity to be “spent” carefully. Bureaucracy, in-the-box thinking, and unnecessary paperwork are best avoided; so are social-climbers, one-uppers, and fixed mind-setters.  I have come to realize that “busy” and “important” are not the same things. I avoid conversations about errands and to-do lists. There seems to be a uniquely American pastime I term “competitive busyness.” Did you know Europe has a kind of “Slowness Society?” You can check it out in a book called In Praise of Slowness: Challenging the Cult of Speed, which we could also call “mindful living.”

My purpose now is to use the energy I can muster to make as much of a positive impact on the lives of my students as possible. With so many of us experiencing Long Haul COVID symptoms, I’m eager to help. Happiness for me requires a yoga mat, a library card, and yes, a passport. If you’d ever like to discuss books, travel, or yoga, I’m all ears and will stay awake for that. If you want to learn more about what has and has not worked for me in terms of CFS/ME, exchange information, I’m also happy to oblige. I hope to set up a Zoom practice for CFS/ME/Long Haul COVID soon, so do get in touch via the contact page if that applies to you.