ME/CFS Treatment and Management
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic condition that affects physical and cognitive function. The disease is also called myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), and Systemic Exertion Intolerance Disease (SEID).
Although ME/CFS can affect anybody at any age, it primarily affects young to middle-aged individuals and is most commonly seen in women. A lack of a biological marker makes ME/CFS challenging to define, often leading to skepticism from medical professionals, which reduces the likelihood of a diagnosis.
Exercise physiologists from the Workwell Foundation can help with ME/CFS, fibromyalgia, long COVID, and other fatigue-related conditions. We work with doctors and attorneys to provide documentation that can assist clients in obtaining disability benefits. By focusing on the functional limitations of ME/CFS, we hope to learn more about the biological causes of post-exertional malaise and fatigue.
This article will cover some basics about ME/CFS to get you started, including current guidelines, symptoms, and potential therapy options.
ME/CFS Guidelines
In 2015, the Institute of Medicine (now the National Academy of Medicine) proposed redefining the diagnostic criteria of ME/CFS to facilitate timely diagnosis and improve understanding of the condition. IOM also published a report guide for healthcare providers describing the symptoms necessary for a diagnosis.
These guidelines include the following symptoms:
- Fatigue – “of new or definite onset” evident for at least six months that significantly impacts a person’s lifestyle and functioning and reflects a definite change from previous energy levels. The fatigue is disproportionate to exertion, worsens with physical activity, and is not alleviated by sleep.
- Post-exertional malaise (PEM) – a worsening of symptoms and function after physical and/or cognitive stress.
- Unrefreshing sleep
Besides these core symptoms, one of two symptoms listed below must be present for a diagnosis:
- Cognitive Impairment – cognitive and memory difficulties. The majority of people with ME/CFS struggle with remembering things quickly. Patients frequently use the term “brain fog” to characterize this condition because they cannot think properly and feel “trapped in a fog.”
- Orthostatic Intolerance – Symptoms that worsen while standing or sitting upright. People with ME/CFS may experience lightheadedness, vertigo, weakness, or fainting upon standing or sitting. They may also have visual disturbances, such as blurred or spotted vision.
Patients with anemia, diabetes, hypothyroidism (underactive thyroid), Lupus, Lyme disease, fibromyalgia, and other health conditions can exhibit similar symptoms. However, blood tests usually provide evidence of such conditions.
It’s estimated that 25% of people with ME/CFS are homebound. 50% are unable to work due to their disability, leaving only 10% that are able to work full-time. Disability from ME/CFS can affect the person’s self-care and ability to interact socially or maintain meaningful employment.
What Therapies Can Help ME/CFS?
ME/CFS currently has no FDA-approved treatments. While there is no cure for ME/CFS, two main strategies are used to manage the condition, including “pacing” (living within a patient’s limits) and managing the symptoms associated with the condition.
Pacing
A cardinal symptom of ME/CFS is post-exertional malaise (PEM) – a flaring of symptoms after exertion, often occurring 24 hours after the triggering event. A PEM “crash” can last for days, weeks, or even months. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM.
Because exertion intolerance is a core feature of ME/CFS, people with this condition must be mindful of their activities. Pacing can help to prevent crashes which includes a worsening of symptoms. Modifying activities to save energy can be helpful. The concept of pacing is simple: patients identify their “energy envelope” and try to stay within it.
Because ME/CFS occurs along a spectrum, pacing strategies might look different from person to person depending on the severity of the disease and PEM triggers.
Pacing involves some trial and error at first. The basic concept is to pay attention to symptoms that occur in response to activities. Learning the early signs of PEM can help to avoid more intense crashes. Pacing is not a cure for ME/CFS but offers a meaningful management strategy.
Many people live in a state of “rolling PEM” – constantly living in a boom-bust crash cycle. People with ME/CFS know they are within their energy envelope when they are no longer in a cycle of crashes.
Pacing with a heart rate monitor can help to avoid crashes by providing immediate feedback while doing activities. Here at Workwell Foundation, we specialize in determining the severity of exertion intolerance using 2-day cardiopulmonary exercise testing (CPET). Our research points to a simple rule of thumb for pacing: stay below your ventilatory/anaerobic threshold (V/AT) heart rate, or within 15 beats of resting heart rate if you are unable to undergo 2-day CPET. To find the resting heart rate, remain flat after waking and record heart rate with a heart rate monitor. Use a seven-day average as the baseline to evaluate recovery from activity. Pay attention to how resting heart rate changes with activity – many people experience an increase or decrease in heart rate during PEM.
Over time, being out of rolling PEM may increase function and allow people to feel better within their energy envelope.
It is important to point out that pacing is not related to graded exercise, a harmful recommendation from doctors who do not understand the basic biology of ME/CFS.
Many chronic conditions benefit from aerobic exercise, but this approach can harm people with ME/CFS, especially those on the moderate to severe end of the spectrum. Graded exercise involves “training” the aerobic system, an energy system that is impaired in people with ME/CFS.
Symptom management
Currently, there are no FDA-approved treatments for ME/CFS, however, many benefit from treating symptoms. In addition to pacing, symptom management can allow patients to make marginal gains in function, which can mean the difference between being able to make a simple meal, bathe, or visit with family. Basic research is uncovering new insights into the disease, hopefully translating to more effective treatments in the future.
ME/CFS is a multisystem disease, meaning many different body systems and their functions can be impacted. This makes treating ME/CFS challenging because there are no one-size-fits-all recommendations when managing symptoms. Some common comorbid conditions include mast cell activation syndrome, various aspects of immune dysfunction, autoimmunity, disorders of the autonomic nervous system (dysautonomia), Ehlers-Danlos Syndrome (EDS), and several impacts on various organ systems, including cardiac, urinary, gastrointestinal, brain, skeletal, and more.
There are only a handful of ME/CFS specialists worldwide, making specialized care inaccessible to most. In recent years, Workwell Foundation has collaborated with a coalition of ME/CFS experts to develop testing and treatment guidelines that can be shared with general practice clinicians and other types of specialists. Ruling in or out common comorbidities of ME/CFS can help point to treatments that can help with symptom management.
Please contact Workwell Foundation at 661-466-2545 if you are interested in learning more about 2-day CPET and how information from testing can be used to improve quality of life and win disability cases.
