The alarming truth is that while some 3.3 million Americans have CFS, only an estimated 15% actually have the proper diagnoses. The end result: The rest are stuck in their homes for extended periods of time, meaning they are unable to work or go to school or, for some, perform everyday chores.
Officially called myalgic encephalomyelitis (ME) but currently known as CFS, the condition, according to the National Academy of Medicine, can be diagnosed in a person with severe fatigue for over six months, post-exertional malaise leading to worsening of symptoms from even the slightest physical or mental activity, and non-refreshing sleep. Associated symptoms include, but are not limited to, mental symptoms, fainting upon standing, and pain all through the body. Unfortunately, despite the clear symptoms, because there are no clear lab tests, the doctor’s diagnosis has to depend on the patient’s history, physical exam, and exclusion of other conditions like hypothyroidism or depression.
According to experts, there are a variety of possible triggers. Certain infections such as COVID-19 or mono are known triggers, but there are others that can create a predisposition: traumatic injuries to the head or neck areas, sudden changes in hormones following pregnancy, stress, nutritional deficiencies, or thyroid and adrenal problems, among others. According to Dr. Jacob Teitelbaum’s definitions, CFS is a “severe energy crisis” that occurs because of a failure in the function of the hypothalamus the body’s regulating center that controls all functions that affect sleeping, waking, blood pressure, and heart rate, a central controlling organ in the brain that regulates functions that control sleeping and waking, among others.
Recently, emerging data from science has indicated that genetics can play a contributing role. Many genes that are linked to the immune system are located on the X chromosome, which highlights the high prevalence within women. Certain human leukocyte antigen haplotypes, including HLA-C*07:04 and HLA-DQB1*03:03, have been discovered to occur with a higher prevalence within patients and point to an immune system susceptibility component. Further research is required to confirm these associations within a broad search of the genetic underpinnings.
Diagnostics look to have taken a giant step forward with the development of BioMapAI, a form of artificial intelligence created by scientists at Duke University and the Jackson Laboratory. Using samples of stool, blood, and other types of lab work, BioMapAI can diagnose ME/CFS with 90% accuracy. Rather than finding that elusive “smoking gun,” what BioMapAI finds is the biological fingerprint, which involves altered gut bacteria, hyperactive immune cells, and disrupted metabolism. Specifically, there are found to be low levels of butyrate, a beneficial fatty acid found within the guts of most healthy individuals, coupled with high levels of tryptophan and benzoate, which are associated with microbial abnormalities.
The implications do not end here. Unfolding these ‘biological disruptions’ could hold leads for ‘targeted interventions’ that could be dietary, lifestyle, or therapeutic, with the goal of reinstating ‘healthy microbiome-immune-metabolome circuits.’ Since ME/CFS appears to have ‘considerable overlap with post-COVID-19 conditions, and BioMapAI findings could provide insights into other post-viral conditions as well
As for treatment, this is still personalized. Patients are strongly encouraged by the Centers for Disease Control and Prevention to work with their healthcare providers to identify the symptoms they need to address most. Methods used most often involve lifestyle modifications, medications, and other forms of therapy. Alternative treatment regimens such as those in Teitelbaum’s SHINE initiative, which involves the use of Sleep, Hormones, Infection, Nutrition, and Gentle Exercises, seem effective. Physiotherapy is also beneficial. For those dealing with ongoing and unexplained fatigue, early medical care is critical. Though diagnosable conditions may be a difficult journey, recent discoveries in genetics and AI technology are much-needed and long-overdue breakthroughs in this disease which has long gone unknown and underdiagnosed for so many years.
