The Awful Truth About ME

ME/CFS Venn diagram

Diagram courtesy of Solve ME/CFS

Myalgic encephalomyelitis (ME) is a systemic (body-wide) neuroimmune (affecting the nervous and immune systems) disease that is characterized by post-exertional relapse (a severe worsening of symptoms after minimal exertion). It affects approximately 2.5 million people in the United States and an estimated 20 million 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.

This awful, devastating, life-crushing and debilitating disease is largely ignored by the medical establishment in the US and other countries and has been for decades. It is trivialized with the name Chronic Fatigue Syndrome in the US–as if a good night’s sleep is all that is needed.

Many Doctors Believe ME “Is All In The Head”

This dismissive name contributes to many doctors believing it is a psychosomatic problem, all in your head, or due to deconditioning. Until early in 2018, the Centers for Disease Control (CDC) recommended counseling and an exercise program as the treatment! While counseling may be helpful in coming to terms with the loss of a career, a parental role and a future, exercise with no accommodation for symptoms is the absolute worst thing for someone with ME.

ME arises after someone–adult or child–does not recover from a flu-like illness, Epstein-Barr Virus, Mononucleosis, any of numerous herpes viruses, Q fever, or other infections. Occasionally, ME has been triggered by environmental toxins, getting a vaccination, or surviving a major trauma.

Regardless of the onset, our health is never the same. People with ME experience numerous symptoms and severity which fluctuate day to day, week to week, month to month, year to year and decade to decade.

Although privately funded research studies are finding diagnostic clues called biomarkers, diagnosis is still made based on excluding other diseases and illnesses.

Feeling Like You Have The Flu

In most cases, a person reports feeling tired most or all of the time, plus having problems concentrating and carrying out daily activities. Most people also report symptoms such as unrefreshing sleep, frequent sore throats, fevers, tender lymph nodes, diffuse pain, muscle weakness, headaches of a new severity, type or pattern and joint pain.

Further, these symptoms are not caused by ongoing exertion, are not relieved by rest and result in reducing or eliminating previous levels of job-related, educational, social and personal activities that once were enjoyed. Approximately a quarter of all people with ME are homebound or bedridden. Many use wheelchairs to conserve energy or because they do not have enough energy or stamina to walk more than a few steps.

The disease can last for 30 years or longer. Very few people recover. Sometimes ME is mild enough to allow working part-time. Some people will have a relapse, usually due to overexertion or stress, and they will come back to their new baseline. Others have a more progressive pattern of slow decline, but a small percentage are so sensitized to external stimuli that they must remain in a dark, silent room.

People With ME Have A Lower Quality Of Life

Despite there being twice as many people with ME in the US as have MS (multiple sclerosis), ME receives only about $2/person in research funding while MS gets about $235/person. HIV/AIDS receives $2,500/person in federal medical research funding. (These figures are based on FY2015 data.) MS is used as a comparison because it also is an illness with a primary symptom of fatigue and involves significant nervous system damage.

A 2018 study comparing people with ME and those with MS to healthy controls found that the ME group experience a greater impact of their disease on life functioning than those with MS. Additionally, researchers found that people with ME are more likely to be unemployed or only able to work part-time than participants in the other two study groups.

Clearly, millions of people are suffering needlessly.

These graphs show how little federal research funding is allocated to ME/CFS and how great our disease burden is compared to other illness.


ME funding 2017

ME disease burden graph

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Many thanks to #MEAction.net, Solve ME/CFS, and ME-Pedia.org for the material used on this site.