I couldn’t take a shower without running out of breath. I couldn’t lift my head from the pillow without a nauseating dizzy spell. Walking to the mailbox put me on the couch for two consecutive days. Within a few short weeks in the summer of 2009, I went from being a full-time student, researcher, and athlete to a shaky, exhausted mess. My fatigue and other symptoms were so crushing, I was forced to bow out of grad school, take disability leave from work, and let go of my previously active life.
Several months dragged by before I was officially diagnosed with chronic fatigue syndrome (CFS), sometimes called myalgic encephalomyelitis (ME). Before my own personal experience with this debilitating illness, I didn’t know much about it. I thought that people who had it were just “more tired” than usual. Perhaps they were suffering from overtraining, or burnout from the never-ending stress of life. But in reality, ME/CFS is its own monster, with a whole host of long-lasting symptoms but very little acknowledgment within the medical community.
What is Chronic Fatigue Syndrome?
Even well into 2018, the clinical understanding of ME/CFS is limited; there’s still no agreed-upon etiology for this illness. In fact, the definition of chronic fatigue syndrome from the Mayo Clinic is “a complicated disorder that can’t be explained by any underlying medical condition.” The fatigue felt by those experiencing the illness may worsen with any physical or even mental activity, and it isn’t eased with rest.
One of the frustrating aspects of ME/CFS is the wide variation of patient presentations, making it hard to diagnose and even harder for people to take seriously. I know that my experience, symptoms, and healing process are unique to me, and my story isn’t the same as many others who live, or have lived, with ME/CFS. For me, it was a sudden onset of dozens of symptoms at once — an acute, disabling disease that morphed into a chronic one. Others with ME/CFS might go through a slow decline, descending over weeks or months into the pit of fatigue, aches, brain fog, and other life-altering problems.
With its many different symptom profiles and onset styles, ME/CFS is a serious issue in our country today. It’s been estimated that more than 2 million Americans have ME/CFS, and about 90 percent of them haven’t been diagnosed. This illness affects twice as many women as men, and it’s most common among people over 40 years of age. But while one study suggests a relationship between ME/CFS and social risk factors, overall, ME/CFS seems to strike without preference for race or educational background. From an economic standpoint, we’re losing more than $9 billion every year in productivity due to ME/CFS, and those who are diagnosed with this illness report greater psychological distress and have higher rates of unemployment than those who don’t meet the diagnostic criteria.
Are You Experiencing CFS?
It’s important to distinguish ME/CFS from “typical” fatigue, burnout, or even chronic fatigue as a symptom of another condition entirely. While there’s still some debate as to the diagnostic criteria for ME/CFS, many physicians turn to the Centers for Disease Control and Prevention (CDC) for their guidelines when confronted with overtired patients. In order for a patient to receive an official diagnosis of chronic fatigue syndrome, they must be experiencing a drop in regular activity levels due to severe fatigue that has lasted more than six months; worsening ME/CFS symptoms after regular physical or mental activity; and trouble falling or staying asleep.
In addition, a patient must either have significant impairment of short-term memory or concentration; or they must experience dizziness, faintness, or weakness when standing or sitting upright in order to be diagnosed with ME/CFS. And that’s not to mention the plethora of other common symptoms that might accompany the illness.
Despite a lack of identified causes for ME/CFS, researchers have found many potential leads from laboratory and medical studies. In control studies of patients who meet the diagnostic criteria for ME/CFS, the following pathologies have been shown:
• Reduced diversity and altered composition of the gut microbiome
• Hypometabolic response to stress, linked to mitochondrial dysfunction
• Abnormal levels of immune cells, particularly natural killer (NK) cells
• Chronic or reactivated infection with viruses such as Epstein-Barr virus (EBV)
• Elevated oxidative stress, particularly following physical activity
• Infection with bacteria such as Borrelia burgdorferi, or Mycoplasma species
In my personal experience, ME/CFS appeared as a chronic infection with EBV (which is known to target nerves and organs like the liver and thyroid) that causes many of my symptoms. I’ve also been diagnosed with Lyme disease, fibromyalgia, and postural orthostatic tachycardia syndrome (POTS); these diagnoses often go together, and in my belief, are just different ways of describing the same thing.
How Can You Feel Better?
As I mentioned, there is tremendous variety in the underlying origins of relentless fatigue, joint/muscle pain, dizziness, brain fog, and sleep problems. Regardless of the exact cause, however, there are things that you can do to feel better and help your body heal from ME/CFS.
When I was first diagnosed many years ago, I wish someone would’ve told me that there was hope for healing and steps I could take to empower myself to get well. I learned a lot by trial and error and by imitating the lifestyles of others who have recovered from ME/CFS. Nowadays, I focus much of my own health coaching practice on helping people like the person I was all those years ago. There are dozens of different strategies that may help with ME/CFS and related illnesses, but I consider these to be some of the most important:
• Address any clinical findings with your health care provider. Consider treating underlying infections or hormone imbalances, and don’t be afraid to take medication if and when it can improve your quality of life.
• Eliminate allergenic and processed foods. For me, this means avoiding foods containing gluten, dairy, eggs, canola oil, MSG, and soy products. A rule of thumb for making the switch to whole, unprocessed foods: Your ingredients shouldn’t have ingredients!
• Focus on natural, colorful, whole foods. There’s little better than fresh fruits, raw veggies, pastured or grass-fed meats, and healthy fats such as coconut and avocado. Big juices, smoothies, and salads are my go-to choices.
• Be mindful of stimulants. Coffee, energy drinks, and other caffeine sources can exacerbate ME/CFS symptoms. Not only can these strain the adrenal glands, but they can also interfere with sleep, which is critical to the healing process.
• Consider herbal medicine. My own healing accelerated after I added supportive herbs to my routine, especially adaptogens. Some of my favorite herbs for ME/CFS include ashwagandha, eleuthero, rhodiola, holy basil (tulsi), reishi mushroom, licorice root, and gotu kola. I make my own tinctures with many of these herbs, and I also incorporate herbal tea into my daily life.
• Reduce the toxins in your environment. There are dozens of potentially dangerous ingredients in household products, including cleaners, detergents, cosmetics, and more. Check your labels for contents like phthalates, parabens, dioxins, triclosan, chlorine, perchloroethylene, formaldehyde, and Teflon coatings. Switch to safe, natural brands, or make your own. The Environmental Working Group is a reliable and helpful resource; learn how they judge cosmetic safety in Cruelty-Free, Nontoxic Makeup, or discover their most highly rated cleaning products at Green Cleaning for Healthy Homes.
• Don’t underestimate the power of your mind and spirit in healing your body. Notice the way you talk to yourself, as well as any limiting beliefs you hold. Find a spiritual practice that works for you. Work with a therapist or counselor. Treat yourself with kindness, always.
If you’re dealing with ME/CFS, or suspect that you are, know that you’re not alone, and that you can feel better. Invest in the right tools to bolster your body’s inherent healing capabilities, and remember to start where you are, taking it one day at a time.
Living with an illness like ME/CFS can be frustrating and isolating, and I recommend doing as much research and networking as possible to find a supportive community and take your healing into your own hands. I’ve had luck, as have many of my clients, with holistic clinicians like naturopaths, herbalists, and integrative or functional medicine doctors. There are also local meetup groups and online support groups that can offer camaraderie and encouragement for those with ME/CFS.
Below, I’ve listed some of the resources I’ve found most helpful, from medical professionals to online communities.
The recent documentary Unrest
Melani Schweder is a certified health coach and reiki master/teacher based in Denver, Colorado. Her personal experience has given her tremendous passion for helping others struggling with chronic illness. She works with clients to help them tap into their body’s inherent healing mechanisms, and gives them the tools they need to feel whole again — mind, body, and soul. Connect with her at www.ABrighterWild.com or on social media @ABrighterWild.