What to Know About Chronic Fatigue Syndrome (Myalgic Encephalomyelitis)
When Rest Is Never Enough
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Myalgic encephalomyelitis was formerly known as chronic fatigue syndrome (CFS). While this term is still in use in some medical communities, an overall shift was made to better reflect the idea that ME doesn't solely involve being tired. You can now find ME referred to as ME/CFS as CFS becomes less frequently used.
Myalgic encephalomyelitis, also known as myalgic encephalitis, is a serious and complex long-term illness that has a primary symptom of intense fatigue. Abbreviated as ME, this illness can impact neurological, autoimmune, and metabolism functions of the body. Patients often experience sleep problems, chronic pain, and more.
Ahead, we will look at the symptoms of ME, how to know if you may have it, and the different treatments available.
What Are the Symptoms of Chronic Fatigue Syndrome?
The primary and most known symptom of myalgic encephalomyelitis is the feeling of being fatigued no matter how much rest you get for a period of more than six months. Physical activity or exertion will usually worsen the feelings of fatigue. The fatigue symptom is broken down into several diagnostic criteria, which we'll discuss ahead. Patients with ME may be bedbound for weeks or even longer.
In addition to feeling endlessly tired long term, ME can have many additional symptoms; patients may experience all, some, or none of them, and myalgic encephalomyelitis can feel like any of them, in addition to fatigue. These are the additional symptoms one may experience with ME.
Memory problems
Headaches
Sore throat
Irregular heartbeat
Digestive troubles
Shortness of breath
Allergies
Chills
Night sweats
Chemical sensitivities
Tender lymph nodes
Related:13 Possible Reasons Why You're Tired All the Time
The Lack of Understanding and Research
According to the Institute of Medicine, 90% of ME patients are undiagnosed. They estimate that anywhere from 836,000 to 2.5 million people have it in the United States alone. ME is not taught in most medical schools, and it is common for patients not to be believed for their symptoms.
A lack of patient belief about ME has been the case for decades: It was a plot arc in two 1989 episodes of the TV show "Golden Girls," and was written based on the real-life experience of one of the show's writers. In the episodes, the character Dorothy sees numerous doctors who tell her that her medical condition is psychosomatic before seeing one who is able to diagnose her properly. This occurred just one year after the illness, then known as CFS, was first written about medically.
Even once properly diagnosed, the lack of understanding and research around ME has led to many patient complaints of poor medical care. Patients have experienced hostility from practitioners and received treatments that worsened their condition. Because there isn't a known cause of ME and may not be any lab tests available for diagnosis, not much progress has been made in the many years since the illness was first discussed on television.
Related:What Is an Invisible Illness?
How Do I Know If I've Got Chronic Fatigue Syndrome?
Because there is no known cause and no specific laboratory work that professionals can perform to diagnose it, knowing you have myalgic encephalomyelitis can be very challenging to confirm. The biggest red flag is if you have been tired for at least six months in a manner that cannot be relieved by rest, and that activity only worsens.
Read on to learn how to get properly diagnosed. Though most common in people aged 40-60, it can occur at any age, including during childhood.
What Are the Criteria That Must Be Met for a Diagnosis of Chronic Fatigue Syndrome?
To be diagnosed with ME, patients must meet three primary criteria, all of which are centered around fatigue. Each of the below must be met:
A serious reduction in the ability to engage in activities for at least six months due to new, profound fatigue that rest does not fix
Post-exertion malaise, in which you feel worse after activities that you conducted before without issue
Sleep that does not lead you to feel refreshed and able to perform activities like before
In addition to these criteria, patients must also meet one of these two:
Cognitive issues, such as memory problems, brain fog, or attention issues
A worsening of symptoms when upright
If you think you have ME, it's vitally important to find a doctor who understands the illness. Keeping an activity journal that details the duration of your fatigue and other symptoms, which you can present to a doctor, may prove helpful.
Related:Why Am I Always Tired?—Common Causes of Fatigue and What to Do
Treatment and Coping With Chronic Fatigue Syndrome
ME does not show up in blood tests, but your doctor should conduct blood work to find out if you have other illnesses. That's because ME often accompanies other diseases, and it may be resolved by proper treatment of those. You can see any type of doctor for initial blood work, provided they have an understanding of ME. From there, you may be referred to a sleep specialist, a rheumatologist, a neurologist, or another type of doctor that specializes in an illness found in your blood work.
Diet may help ease some of the symptoms of ME, but it is not a cure for it. Eating simple, wholesome foods and avoiding foods such as refined sugars, artificial ingredients, alcohol, caffeine, and MSG may be helpful.
Because ME can be caused by other illnesses, receiving a comprehensive diagnosis is imperative to becoming well again. ME can potentially be caused by anything from mold to viruses to genetics.
Treatment may involve pharmaceuticals, holistic remedies, experimental treatments, or diet. Be sure to check with your healthcare provider before starting any of these treatment options.
Pharmaceuticals
There are no medications that can directly treat ME, but medications may help to relieve symptoms.
OTC: Over-the-counter products such as anti-inflammatory medication and painkillers can alleviate physical discomfort.
Prescription painkillers: These may be used short-term in acute instances of flare-ups.
Antidepressants: Prescription antidepressants can help patients who are experiencing the emotional effects of ME and may assist with sleep and pain, as well.
Holistic Remedies
For those seeking a more natural approach, some alternative treatments are also available.
Stress management: Taking action to manage stress can relieve some of the physical effects of ME. This may include deep breathing or meditation.
Lifestyle changes: Changing the amount of activities you attempt on a daily basis can make it so that you have more energy left for the most important things you have to do. A holistic approach to life, while being mindful of your energy reserves, can enable this shift.
Exercise: Despite the pain involved in ME, any amount of movement a person can get in can help to relieve some painful symptoms. Your practitioner may suggest you perform only light, minor exercise, such as stretching.
Supplements: Nutritional supplements such as vitamin B12, folic acid, NADH + coenzyme Q10, and D-ribose may help to alleviate symptoms of ME.
Experimental Treatments
There are two drugs that are used in an experimental context for the treatment of ME.
Ampligen: Used since the late 1980s to treat ME, this drug has been studied in patients with some success but did not gain FDA approval for usage with the illness. Other countries have approved it, but the United States has not. As such, it is considered experimental.
Rituximab: Used in treatments for cancer and autoimmune illness, this drug is still being studied for its ability to improve the symptoms of patients with ME. Study results have been positive thus far, but no FDA approval has yet occurred.
Diet
Because ME can lead to many gastrointestinal issues, crafting your diet into one that does not upset your system further is paramount. Beyond that, eating for energy is key.
The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society suggests that you listen to your body in regards to what it needs, eat as simple of foods as possible, and eat as many whole foods as you are able to. They recommend avoiding stimulants such as caffeine, alcohol, and sugar.
You'll want to work closely with a doctor to monitor your progress, and all treatments may take a considerable amount of time before symptoms improve.
The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society has a free physician and clinic database available. This is an excellent resource to consult if you are seeking a doctor who can properly care for you after a diagnosis of ME, or in order to obtain one.
Read Next:Anergia: When Is a Lack of Energy Cause for Concern?
