Get the Facts about ME/CFS

June 6, 2013

What Is ME/CFS?
Who Gets ME/CFS?
What Are the Symptoms of ME/CFS?
How Is ME/CFS Diagnosed?
How Is ME/CFS Treated?
What Is It Like Living with ME/CFS?
Why Has ME/CFS Treatment Progress Been Slow?

 

What Is ME/CFS?

Myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), is a complex and debilitating chronic disease with a serious impact on one’s quality of life.

 

Who Gets ME/CFS?

Approximately 1 – 2.4 million people in the United States have ME/CFS, and the condition affects millions more worldwide. Although research has shown that ME/CFS is about two to four times more likely to occur in women than men, ME/CFS strikes people from every age, racial, ethnic, and socioeconomic group.

 

What Are the Symptoms of ME/CFS?

If you think you may have ME/CFS, take our quick online quiz.

ME/CFS symptoms, which can often be made worse by standing upright, include

  • Extreme exhaustion
  • Non-restorative sleep
  • Brain fog/cognitive impairment
  • Joint pain
  • Inflamed lymph nodes
  • Persistent sore throat
  • Severe headache
  • Neurological abnormalities
  • Complete organ system shutdown
  • Sensitivity to light, sound, odors, chemicals, foods, and medications
  • Irritability, depression, and mood swings

Because these symptoms are shared with many other illnesses—and because many of these conditions lack a diagnostic test or biomarker—unraveling which illnesses are present can be difficult. Some patients actually receive diagnoses for multiple conditions. Common conditions that occur along with ME/CFS include the following:

  • Fibromyalgia
  • Orthostatic intolerance
  • Irritable bowel syndrome
  • Interstitial cystitis
  • Temporomandibular joint disorder
  • Chronic pelvic pain
  • Multiple chemical sensitivity disorder

 

How Is ME/CFS Diagnosed?

Studies show that fewer than 20 percent of ME/CFS patients in the United States have been properly diagnosed. Diagnosing ME/CFS is a challenging process, because there is still not one diagnostic test or biomarker that’s conclusive. The process requires tests to rule out other conditions that may present similar symptoms before a diagnosis of ME/CFS can be established. It can take months.

Diagnosis can also be complicated by the fact that symptoms and severity of ME/CFS vary considerably from person to person. Seek care first from the healthcare provider who knows you best and will work with you to rule out other possible causes of symptoms and identify other conditions.

 

How Is ME/CFS Treated?

Since no cause or cure for ME/CFS has been identified, treatment is directed at relieving symptoms. Although there’s no single treatment that fixes the illness at its core, there are treatments that can improve symptoms, increase function, and allow people with ME/CFS to engage in activities of daily living.

Sleep problems, pain, heartrate irregularities, gastrointestinal difficulties, allergies, and depression are some of the symptoms that can potentially be relieved by treatment.

Alternative therapies are also often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management.

If you think you may have ME/CFS, take our quick online quiz.

 

What Is It Like Living with ME/CFS?

The severity of ME/CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, ME/CFS has a profound impact. About 25 percent of people with ME/CFS are disabled by the illness and there’s often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for family members, friends and the public to understand the challenges of the condition.

More severe ME/CFS patients have been found to be more functionally impaired than those with other disabling illnesses such as type 2 diabetes, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease. These same patients have the lowest median quality of life scores of any disease tested, including lung cancer, rheumatoid arthritis, and brain stroke.

 

Why Has ME/CFS Progress Been So Slow?

spending_graphic_federalThe National Institutes of Health (NIH) publishes a list annually showing its spending on various diseases. In 2015, the ME/CFS research budget, ranked in order by research dollars, was 249 out of 265 diseases funded—almost at the very bottom. In actual dollars, government spending on ME/CFS is less than is spent on hay fever.

To really make headway in a timely manner toward making ME/CFS understood, diagnosable, and treatable, we need more government funding.