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The Health Mystery That Is Chronic Fatigue Syndrome

If you feel extremely tired, have trouble concentrating, and suffer from a constellation of unusual aches and pains that tend to come and go, you may have encountered skepticism and even derision from your friends, family, employers, and insurers that you’re really sick.

But our family practice doctors in Delray Beach, want you to know the problem is not “all in your mind.” You may have a very real disease known as chronic fatigue syndrome (CFS). Also called myalgic encephalomyelitis (ME), it can begin suddenly or gradually, involve myriad symptoms, and have a devastating effect on the lives of those it touches.

Symptoms differ

Because the symptoms of CFS vary significantly from person to person, in years past the illness was derisively dismissed as largely imaginary. Sufferers variously complain of flu-like symptoms, muscle aches and pain, dizziness, headaches, unexplained joint pain, tender lymph nodes in the neck or armpits, frequent sore throats, digestive issues like irritable bowel syndrome, depression, chills and night sweats, allergies, and sensitivities to foods, odors, chemicals, or noise. Whatever ancillary symptoms are present, however, the overriding complaint is persistent, exhausting fatigue that prevents patients from living a normal life.

The Centers for Disease Control and Prevention (CDC) lists three primary or “core” symptoms required for a diagnosis of ME/CFS:

  1. Greatly lowered ability to do activities that were usual before the illness.
  2. Worsening of ME/CFS symptoms after physical or mental activity.
  3. Not feeling better or less tired despite a full night’s sleep, or having trouble falling asleep or staying asleep.

In addition, one of the following two symptoms must be present for a definitive diagnosis:

  • Problems with thinking or remembering (often described as “brain fog”); or,
  • Worsening of symptoms while standing or sitting upright, feeling weak or faint while standing or sitting up, or such vision changes as blurring or seeing spots.

CFS can occur at any age, and tends to affect women more often than men.

Proof at last

Until 2017, if your doctor did take your symptoms seriously, a diagnosis of CFS was made through exhaustive testing for other diseases that might share some of the symptoms, and ruling those out as possible causes. These include anemia, diabetes, hypothyroidism, various sleep disorders, and certain mental health issues.

But a research team at Stanford University in California published a paper in 2017 in the journal Proceedings of the National Academy of Sciences (PNAS) detailing the results of their study on ME/CFS. They looked at the serum cytokines (blood proteins) of 192 ME/CFS patients versus 392 healthy patients, and found that concentrations of 17 different cytokines rose in concert with the severity of a patient’s symptoms. According to Mark Davis, senior author of the study, “Our findings show clearly that it’s an inflammatory disease and provide a solid basis for a diagnostic blood test.”

Not only is there now a reliable test to detect the presence of CFS, having evidence that their symptoms are real has been a welcome relief to sufferers, estimated to be as high as 2.5 million Americans.

“I have seen the horrors of this disease, multiplied by hundreds of patients,” Jose Montoya, the lead author of the study, said in a statement. “It’s been observed and talked about for 35 years now, sometimes with the onus of being described as a psychological condition. But chronic fatigue syndrome is by no means a figment of the imagination. This is real.”

This blood test, however, is still an indicator rather than producing a definitive diagnosis. Other researchers at Columbia University’s Mailman School of Public Health are focusing on metabolites, which they say can diagnose ME/CFS with an accuracy of 84 percent.

Relief, but no cure

The unfortunate reality of CFS is that there is no known cure. Treatment consists of a variety of approaches to help relieve and cope with symptoms. The CDC recommends that patients should focus on which symptoms are the most problematic, and address them first. It suggests a variety of therapies including:

  • professional counseling to help find strategies to cope with the illness and its impact on daily life and relationships;
  • a balanced diet;
  • nutritional supplements based on blood tests to see whether any nutrient levels are lacking; and,
  • complementary therapies such as meditation, gentle massage, deep breathing, or relaxation therapy.

One long-used therapy for CFE has recently been called into question. Graded exercise therapy (GET) has been used for years to gradually introduce increasing amounts of exercise as a way to restore mobility to patients. Some researchers contend that GET can lead to months’-long relapses, while others argue that GET is a safe, proven method to reduce symptoms and improve quality of life.

If you’re experiencing any of the symptoms of CFS, please let us know. We can help provide a definitive diagnosis, and offer ways to cope with this very real, very debilitating illness.

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