The learning curve for my new health situation has been complicated, more like a labyrinth with its many twists and turns. I’m grateful for the Bateman Horne Center, where I learned more about myalgic encephalomyelitis (ME) also known as chronic fatigue syndrome (CFS). The Bateman Horne Center’s support groups and educational videos helped me to understand that ME/CFS and Long Covid (LC) share many of the same symptoms, notably Post Exertional Malaise (PEM). I learned that PEM is a primary feature of ME and may involve dysfunction, injury, or vagal nerve inflammation. ME may be triggered after a viral infection, trauma, or hormonal changes. Biological abnormalities in ME patients can be noted in central and autonomic nervous systems, immune system, and in cellular energy metabolism (think “mitochondria”). Frontiers in Medicine reports that among Covid Long Haulers, 13-45% meet the criteria for ME/CFS.
Whatever ME’s root cause, and even though an estimated 3.3 million Americans have this condition, historically it has not been a priority for medical research or treatment trials. Sufferers are primarily female, often dismissed as having mental health problems. The presumption that ME is caused by negative illness beliefs, anxiety, depression, or other mental health conditions often prompt prescriptions for pharmaceutical drugs, referrals for psychotherapy, or suggestions to manifest better health with positive thinking or being more active. The idea that ME is “all in your head” or that it will “get better if you get moving (i.e. exercise)” has been recommended to patients for decades. In truth, Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) are often prescribed to ME patients with disabling results.
The idea that ME/CFS is “all in one’s head” is oversimplifying a complex multi-system condition that often requires immediate attention and care. This condition may have the appearance of being rooted in the psyche, perhaps a “fear” that can be overcome with psychotherapy, prayer, affirmations or repatterning thoughts to eradicate negative thoughts about health, illness, life, or death. Early on in my own journey, I went to these kinds of questions often: Why is this happening? What does that symptom ‘mean’? What am I afraid of? And so forth into infinity, death, and beyond; a labyrinth of twists and turns that were sometimes healing and insightful, and often exhausting. Following a healing tip from Dr. Richard Bartlett, I prefer the question: What is useful right now? Answers usually include small, but practical actions to calm both body and mind, and to bring me back to the present moment (i.e. breathe, rest, meditate, drink water, stretch, etc.). This practice is magical, as it is both empowering and palliative, immediately improving life-quality.
Exploring the psychological, metaphysical, or experiential (often traumatic) root causes behind health conditions are valid and often-useful processes. I’ve seen the healing value this kind of processing provides for clients and for my own personal growth work. Processing in this way requires focus, attention, and exertion. It can be hard work even for people in good health! For persons with ME or other chronic conditions, processing this way can result in physical exhaustion and dysautonomia (malfunction of the autonomic nervous system). When living with a chronic condition, it is essential to be aware and mindful of the personal “energy envelope” on days before, during, and after therapy. One must practice both self-care and self-compassion to remain stable.
According to Merriam Webster, “labyrinth” is a complicated irregular network of passages or paths in which it is difficult to find one’s way. It’s true that the labyrinth can be complicated and difficult (like having a chronic illness). But they can be wonderful too. I love to walk the local labyrinths alone or with others, a moving meditation. At home, I can engage the labyrinth anytime with a sitting meditation, envisioning my favorite outdoor labyrinth, the wind and sounds of silence or ravens, the curving path taking me steadily toward the center where I stand quietly, to breathe and be. Here, I reflect on walking with others, the sound of our footfalls crunching the gravel and shared willingness to seek the center providing a sense of community and connection. My imaginary labyrinth includes people at every stage of life, young and old, robust, and frail, living and beyond life. We enter the labyrinth with humility, good humor, and a willingness for grace to prevail. There is peace as we walk toward the stillness of the center, once there, just breathing and being. To glimpse the meditative gifts of the labyrinth, listen now to this YouTube video and find your own peaceful center today.
Thank you for reading! Next time in the Long Covid series, we explore more about ME with help from Giles Meehan
Please Note: The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions. All site content is for informational purposes only and should not be taken as medical advice. Always consult with medical professionals to address new or persisting health concerns.
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