Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (ME/CFS), is a multisystem disorder that affects the brain, the autonomic nervous system, the cardiovascular system, the gastrointestinal system, and the immune system. It is estimated that this disease affects approximately 3 million Americans and 580,000 Canadians.
Dr. David Kaufman, Internal Medicine physician at the Center for Complex Diseases Mountain View, California, and former Medical Director of Open Medicine Institute, He has created a fantastic video on how to diagnose and manage myalgic encephalomyelitis. The video is directed at medical practitioners, but can also be useful to patients with ME and their families.
Share with your health care practitioner, family or carer.
"This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is part of the Unrest Continuing Education module, made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch Unrest online for free and receive Continuing Education credit."
The rest of this article briefly summarizes the above video, with a focus on diagnosing and caring for patients with myalgic encephalomyelitis/chronic fatigue syndrome.
About ME/CFS: How do you get it?
About 80% of patients report the first ME/CFS symptoms after having an acute viral or bacterial infection. Some of the most common infectious disease triggers of ME/CFS are the herpes viruses, including Epstein-Barr virus, cytomegalovirus, and HHV Six, as well as enteroviruses like Coxsackie B.
ME/CFS can also stem from physical traumas such as accidents or surgeries. Genetic factors may also play a role: having someone in the family with ME drastically increases a person’s chance of developing it.
Most patients with ME/CFS are adults, but pediatric ME/CFS—ME/CFS in children—can also occur.
The main symptoms of myalgic encephalomyelitis and diagnostic criteria
According to the 2015 report from the National Academy of Medicine, the following symptoms are required for a clinical diagnosis of ME:
A substantial reduction or inability to engage in pre-disease activities that persists for six months or more;
Overwhelming fatigue that is profound and chronic, not the result of exertion, and not alleviated by rest;
Post-exertional malaise (PEM)—a condition in which physical or mental activities result in immediate and/or delayed exacerbation of symptoms and prolonged reduction in functioning with markedly increased recovery time.
Unrefreshing sleep; and
Cognitive impairment and/or orthostatic intolerance.
The above features can be moderate to severe and are present at least 50% of the time.
What is post-exertional malaise?
Post-exertional malaise (PEM) is one of the core symptoms of ME/CFS. It helps differentiate ME/CFS from other diseases.
PEM is a worsening of all symptoms after sustained physical or cognitive exertion and ME/CFS patients often refer to it as “crashing”. After this kind of exertion, all of the patient’s symptoms may get worse. Sometimes it can take up to months to improve back to baseline. PEM can occur directly after exertion or be delayed by up to 48 hours.
ME/CFS occurs on a spectrum
ME is considered a spectrum disorder, meaning that some patients may experience it much more than others. Some patients will crash after walking a mile or spending a day at work, while other patients may experience PEM from tasks as small as sitting up in bed or brushing their teeth.
ME often creates cognitive dysfunction
ME patients often refer to having a "brain fog." This cognitive impairment can even lead patients to suddenly not remember where they are or to get lost in their own neighbourhood. Others may have trouble finding words or remembering what they were saying.
Orthostatic intolerance
Orthostatic intolerance happens when the body is unable to regulate blood pressure or heart rate in the upright position. The most common types of orthostatic intolerance found in ME patients are Neurally Mediated Hypotension (NMH), and postural orthostatic tachycardia (POTS). Symptoms of orthostatic intolerance may include:
Dizziness
Weakness
Heart palpitations
Increased brain fog
Other diagnostic tools for identifying ME/CFS
The two other commonly used diagnostic tools for identifying myalgic encephalomyelitis are the Canadian Consensus Criteria and the International Consensus Criteria.
These criteria include other symptoms that may not appear in all patients, but are also quite common:
Pain in muscles and/or joints
HeadachesConfusion and difficulty retrieving words from memory
Spatial instability and disorientation
Poor coordination
Ataxia
Gastrointestinal symptoms such as nausea or abdominal pain
Autonomic and endocrine symptoms such as poor temperature regulation
Intolerance to cold or heat
immunological symptoms such as recurrent sensitive lymph nodes
Sensitivity to light, sound, smell, and even muscle touch
Comorbidities with ME
Some conditions that commonly co-occur in patients with ME are:
Sleep disorders
Postural tachycardia syndrome (POTS)
Hypermobility
Ehlers-Danlos Syndrome
Mast cell activation disorder
Bacterial overgrowth of the small intestine
Celiac disease
Allergies
In general, patients with ME have lower scores on measures of quality of life, and greater disability than patients with other serious diseases, including diabetes, colon cancer, multiple sclerosis, and chronic renal failure.
As mentioned earlier, patients live on a spectrum. About 25% of ME patients have symptoms severe enough to be trapped at home or in bed. They may be unable to sit up or feed themselves. At the other end of the spectrum, about 25% are still able to work and may appear normal but require rest and recovery from their daily activities.
It is important to understand this spectrum, because severe patients may get better over time, but mildly affected patients may also get worse. This is why early diagnosis and pacing of activity are so important. In addition to the great variability between patients, the functioning of an individual patient can vary day to day and week to week.
Prognosis and Recovery from ME
Recovery from ME is possible but not common. Only 5% of adults with the disease will make a full recovery. Remember that recovery isn’t a matter of effort or a positive attitude. There is no cure for ME, but patients can improve over time.
Treatments and symptom management
There is also a lot that we can do to help improve the quality of life for people who have ME. Here are some treatments that may be effective.
Pacing. Pacing means maintaining activity, but doing it within the person’s safe range. Patients often call this their “energy envelope”. Pacing can help prevent crashes.
Some techniques for pacing include:
Counting steps
Monitoring heart rate
Breaking down the main activity into parts
Including rest breaks
Asking patients to estimate their cognitive and physical activity on a normal day, and then reduce this activity by 25%
Check out our pacing resources here.
Maintaining symptom diary. It’s not always clear what activities caused a crash. But it can be important to know so that patients can avoid that activity or modify it. To do that, some patients find it helpful to keep a diary of symptoms and medications.
Pain. Pain medications, and NSAIDS in particular, can be useful. These include Celecoxib, low-dose Naltrexone, and Tramadol.
Sleep. Many ME patients experience disordered sleep. Sleep hygiene practices can help. Sleep medications can also be useful.
Stay hydrated. Patients who experience orthostatic intolerance can benefit from maintaining adequate water intake. In the above video, Dr. Kaufman suggests drinking at least 2 litres of water a day. Patients should also increase their intake of electrolytes. Some medications like beta blockers may also help with orthostatic intolerance.
Graded exercise therapy (GET) can be harmful to patients with ME
One of the previous treatments recommended for patients with ME was graded exercise therapy (GET). But research has found that GET may induce a pattern of gene expression, inflammation, and metabolic dysfunction unique to people with ME. The National Academy of Medicine now finds the evidence for GET with people with ME to be lacking.
GET is no longer recommended by the Centers for Disease Control as a treatment for ME. Many patients report that exercise can actually worsen their condition.
Other ways to support patients
There are potentially many other ways to support patients with ME, depending on their symptoms.
For patients with sensory sensitivities, eye masks, sunglasses, or earplugs can be very helpful. Wheelchairs can be helpful for individuals for whom walking can elicit PEM. Handicap parking stickers can also improve the quality of life for some patients.
Patients may also need help applying for disability benefits or getting accommodations in school or at work. Doctors can support this process by providing the documentation necessary for such applications.
Check out the ME|FM society for other support options
The ME|FM society is dedicated to supporting patients with ME/CFS. Check out our support page to learn how we do that and for ME support resources. And feel free to get in touch for more information.
Want to do more? Get involved with the society!
Whether you are a patient living with Myalgic Encephalomyelitis or Fibromyalgia, or you are a caregiver or someone who just wants to help, there are multiple ways to get involved with our Society. We’d love to hear from you!