CHRONIC FATIGUE SYNDROME (ME/CFS) IS…
A Major Disorder
“I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses I would rather have H.I.V.” Dr. Nancy Klimas, 2009
The name “Chronic Fatigue Syndrome” has long obscured the serious nature of the disorder. Studies indicate, though, that ME/CFS is amongst the most functionally disabling diseases known.
People with ME/CFS are as or more functionally limited than people with type II diabetes, multiple sclerosis, congestive heart failure and end-stage renal disease. They also have a lower quality of life than people with cancer, stroke, renal failure and schizophrenia.
A Centers For Disease Control (CDC) study indicates disability rates for ME/CFS are similar to those found in multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other serious diseases. Twenty-five percent of people with MECFS are home or bed-bound. One study, found that only an astonishingly low 13% were employed full-time.
The FDA’s classification of ME/CFS as a serious disorder puts it the same category as disorders such as heart disease, kidney disease, diabetes, etc. Economic costs to the U.S. run to the tens of billions of dollars yearly.
The evidence is clear. Despite it’s milquetoast name ME/CFS is a serious illness that commonly causes long term disability and severe financial hardships.
Studies suggest from 1-4 million people in the U.S. have chronic fatigue syndrome (ME/CFS). Extrapolating the results of a 2017 Canadian Survey to the U.S., however, suggests that up to five times more people in the U.S. may be effected. Middle-aged women are most commonly affected, but the disorder can strike males or females of almost any age.
The Centers for Disease Control estimates that approximately 80% of people that meet the criteria for chronic fatigue syndrome (ME/CFS) in the United States have not been diagnosed. Information on ME/CFS is rarely provided in medical schools, doctor ignorance is high and ME/CFS knowledgeable physicians are rare.
Many people with ME/CFS are first misdiagnosed with depression. Anti-depressants and psychotherapy, however, have never proven to be effective treatments for ME/CFS, and while mood disorders exist – as they do in any chronic illness – numerous studies have failed to find a link between them and ME/CFS. Find out how to tell the difference between ME/CFS and depression.
The average annual costs per family, including financial losses due to unemployment, are about $25,000 a year. CDC studies suggest chronic fatigue syndrome (ME/CFS) costs the US economy about 20 billion dollars a year.
More Commonly Found in Women
Like its so-called ‘allied disorders’ such as fibromygalia, migraine and irritable bowel syndrome, ME/CFS is most commonly found in women. A similar gender imbalance is also found in autoimmune disorders.
Modeling efforts suggest that sex hormone and immune issues may leave women more at risk. Few studies, however, have attempted to determine why this gender imbalance exists.
Defined By Symptoms (Not Laboratory Tests)
Although consistent laboratory results can be found (reduced natural killer cell functioning, reduced HRV, reduced blood volume, etc.) laboratory results are not considered diagnostic and most physicians rely on symptoms to diagnose ME/CFS. Knowledgeable physicians state the disorders presentation is unmistakable.
Besides exhaustion or fatigue, people with chronic fatigue syndrome (ME/CFS) often display a wide variety of symptoms. Two symptoms, however, post-exertional malaise (symptom exacerbation or “flares” after exercise) and cognitive issues (“brain-fog”, reduced short term memory, problems findings ords and concentrating) are considered hallmarks of the illness.
Other common symptoms include unrefreshing sleep, muscle and joint pain, headaches, difficulty standing without symptoms (orthostatic intolerance), digestive issues, problems with light, noise, odor, etc.
- Dig Deeper! Check out ME/CFS Symptoms
Poorly Funded and Studied
Despite Center for Disease Control (CDC) studies indicating a million or more patients with high rates of disability live in the US, chronic fatigue syndrome (ME/CFS) is among the most poorly funded disorders, ranking in the bottom 5% in funding of the diseases and conditions the National Instititues of Health (NIH) funds.
High economic costs to the nation (approx $20 billion/year) contrast with extremely low funding rates per patient per year (@ $10).
Even after recent increases in NIH funding, chronic fatigue syndrome still receives only about $13 million a year in funding. Disorders of similar scope typically receive from 50 to 200 million dollars a year.
Find Out More
- The Basics: A Guide to Learning, Sharing and Making a Difference in Chronic Fatigue Syndrome (ME/CFS)
- Tips for Newbies
- Recovery Stories