Everyone feels run down from time to time. Stress, poor sleep, unhealthy eating habits, and lack of exercise are staples for many women juggling the complexities of career and family. But when might gnawing fatigue be cause for greater concern?
Many women may be asking this same question after seeing the Oscar-nominated documentary Unrest, a film that chronicles the story of Jennifer Brea, a bright, young woman who embarked on a medical odyssey to discover the cause of her fatigue and rapidly declining health. Along the way, she uncovered a hidden world of chronically-ill people, who, like her, were largely forgotten by medicine.
At one point in her journey, Brea is told by a neurologist that all of her symptoms could be explained by conversion disorder, a condition once called “hysteria” and believed to only apply to women. She persevered and discovered that she has a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex neuro-immune disease that was wrongly believed to be a psychiatric illness, as were many illnesses throughout history until the cause was discovered. ME/CFS is still framed as a psychiatric illness in some European countries, including the United Kingdom, despite ample evidence showing extensive immunological and metabolic abnormalities.
In her film, Brea poignantly says, “Illness doesn’t scare me. Death doesn’t scare me. What terrifies me is that you can disappear because someone tells the wrong story about you. I know that no one is coming to find me because no one even realizes I’ve disappeared.”
It is still too easy for doctors to dismiss fatigue in women and send them home with a prescription for antidepressants without doing a full work up. Because of this gender bias in medicine, women may find that they need to advocate for their health when fatigue is involved.
Many serious illnesses, especially autoimmune conditions, can cause fatigue. Diseases such as Hashimoto’s thyroiditis, rheumatoid arthritis, multiple sclerosis, lupus, Sjogren’s disease, adrenal insufficiency, fibromyalgia, Lyme disease and more can cause fatigue and pain similar to ME/CFS. Because ME/CFS is largely a diagnosis of exclusion, it is essential to first rule out these and other fatiguing conditions, including depression.
There is one aspect of ME/CFS that sets it apart from other fatiguing illnesses – a broken energy production system. Brea likens this aspect of the disease to a cell phone battery that only charges up to a certain point, say 20%. Attempts to exceed energy limits only worsen this condition.
The hallmark feature of ME/CFS is an exacerbation of neurological and immunological symptoms after exertion, which may include physical, cognitive, and emotional activities. The post-exertional symptoms can last for days, weeks, and even months and are not relieved by rest. Although exercise may be beneficial for managing many illnesses, it is detrimental in ME/CFS patients unless it is done under careful supervision. This phenomenon is uncommon in other illnesses.
ME/CFS is a spectrum disorder, meaning that the condition ranges from mild to severe. Approximately 25% of patients with this illness are severe and confined to their beds or homes. The disease can have an abrupt onset, as was the case for Jennifer Brea, or come on more gradually with mild symptoms at first. Many people who start out mild or moderate worsen over time if warnings to stay within energy limits are not heeded.
Woman in the age group of 35-50 and adolescent children are at a greater risk for getting ME/CFS, but men and young children also get the disease. It is found in nearly every country but is largely underreported in people of color. The mechanism of this disease is still poorly understood and there currently are no FDA-approved treatments.
What can people do when ME/CFS is suspected?
Getting familiar with symptoms. Does your fatigue fit a pattern? How do you feel when you wake up in the morning? People with ME/CFS wake up feeling unrefreshed, regardless of how much they have slept. How does your energy level change throughout the day? Many ME/CFS patients describe their fatigue as flu-like, with deep fatigue and diffuse pain throughout the body. Medical fatigue differs from feeling tired, as one might experience after only a few hours of sleep.
Do you feel worse in the days following exertion? If so, this could be a sign of post-exertional malaise (PEM). Often this phenomenon is delayed, making it hard to detect PEM.
Many other symptoms occur in ME/CFS. Insomnia, new headache patterns, gastrointestinal problems, and feeling dizzy when standing often accompany the fatigue. Keeping a journal of symptoms helps when preparing for appointments.
Ruling out other conditions. A general practice doctor (GP) is the first line of defense in diagnosing ME/CFS, yet most medical school curricula do not include this illness and many doctors wrongly still believe that the condition is psychosomatic, or “all in your head.”
A GP will likely order some basic blood tests, such as a complete blood count, complete metabolic panel, and a thyroid panel. Basic autoimmune tests may also be ordered. In most cases, these tests will come back normal in people with ME/CFS. Depending on the doctor, investigations may end with the conclusion that the fatigue is caused by anxiety and depression simply because basic blood tests did not reveal any abnormalities.
Ruling in ME/CFS. Because ME/CFS is a diagnosis of exclusion, it is crucial to have a thorough differential diagnosis before ruling it in. A differential diagnosis is the process by which doctors evaluate possible explanations for a set of symptoms.
There are several areas of medicine involved in a differential diagnosis when ME/CFS is suspected. Infectious disease testing may be needed to determine if chronic infections are present. Neurologists may need to evaluate patients for dysfunction of the autonomic nervous system, the portion of our body that controls involuntary functions, such as heart rate, blood pressure, and digestion. Magnetic Resonance Imaging (MRI) can reveal cranial and spinal abnormalities that could mimic the symptoms of ME/CFS. Rheumatologists may test for autoimmune conditions and connective tissues disorders, such as Ehlers-Danlos Syndrome (EDS), to determine if these conditions are a part of the picture. However, be aware that many specialists in these areas lack training in ME/CFS.
The simple blood tests ordered by general practice doctors will not pick up these and other conditions.
Seeking specialists. There are few ME/CFS specialists to be found in the world, and those who exist usually have long waiting lists. Many ME/CFS specialists have private practices and typically do not accept insurance. ME/CFS specialists are highly varied in their approaches to treating the disease. Before investing in a specialist, be sure to understand the different approaches and select the one who best fits your specific needs. A list of ME/CFS specialists can be found here.
Managing ME/CFS. Although there are presently no FDA-approved treatments for ME/CFS, there are many tools for managing the disease and preventing it from worsening over time.
Lifestyle changes that involve pacing can greatly help staying within energy limits. This can be done in a number of ways – scheduling in rest periods, using a heart-rate monitor, and generally reducing commitments. Cutting back on work, family, and social obligations may be necessary.
Inflammation is chronic and unremitting in ME/CFS. Adopting a low-inflammation diet, such as auto-immune paleo, ketogenic, and plant-based diets can help to keep inflammation down. Avoiding dairy and gluten seems to help many individuals. Some people also find that they have problems with mast-cell activation and do well with a low-histamine diet.
Depending on the manifestation of the disease, there are medications that can help ease inflammation, brain fog, pain, and symptoms stemming from disorders of the autonomic nervous system. Migraines and sleep problems can also be managed. Yet many women are told there is nothing that can be done.
Exercise is harmful to people with ME/CFS, but when done under the supervision of a physical therapist, it can help to prevent deconditioning.
Never has there been more hope for people with ME/CFS. Recently the National Institutes of Health funded three new multidisciplinary research centers for ME/CFS. Private philanthropists are also playing a huge role in solving this disease – the Pineapple Fund recently donated $5 million to the Open Medicine Foundation, a leading research non-profit working on the ME/CFS puzzle. The Centers for Disease Control and Prevention (CDC) recently removed damaging and misleading information about the disease and replaced it with materials that will better help to guide both physicians and patients navigating this disease.
Many physicians still dismiss ME/CFS out of ignorance, but mounting evidence will make it difficult to maintain such views for much longer. Although there are no approved treatments for ME/CFS, breakthroughs will occur in the coming years owing to increased funding levels and an increased number of talented medical researchers joining the ranks to determine the mechanism of this disease. In the meantime, ME/CFS can be managed in a number of ways to increase the quality of life and to prevent further health losses.