Awful truth about ME

The Awful Truth About ME

Myalgic Encephalomyelitis (ME) is a body-wide disease affecting the nervous and immune systems that is characterized by 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 is about two to four times more likely to occur in women than men, the disease 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 (CFS) in the US–as if a good night’s sleep is all that is needed.

young woman looking out a window  holding a cup
More women than men have ME but the disease can strike anyone from school-age to retirement. Most people with ME are in their prime productive years.

Many Doctors Believe ME Is “All In The Imagination”

The dismissive name, chronic fatigue syndrome, contributes to many doctors believing it is a psychosomatic problem (all in your head) or due to deconditioning. To think someone would fake the debilitating symptoms and bone-crushing fatigue of ME is simply beyond what anyone who has the disease can imagine!

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. 

The disease 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. Rarely, 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

young woman looking window cup
People with ME experience body aches, digestive problems, and unrelenting fatigue that is more powerful than anything experienced before the illness.

In most cases, a person reports feeling exhausted 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 relieved by a good night’s sleep. The burden this places on people often results in reducing or eliminating previous levels of job-related, educational, social and personal activities. 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 a new lower baseline of function. Others have a more progressive pattern of slow decline. 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

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.

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.

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.

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

What is your own experience with ME? Can you add to this post? Let me know below.

  • I think it’s such a disgrace that people who have ME are labelled with Chronic Fatigue. Like you say, it’s like someone patronizingly saying “Ah, there there, have a good sleep and you’ll be OK tomorrow” or “Did you manage to get some rest yet?”

    I think it’s only when you suffer with it yourself, or you’re close to someone who suffers with it that you realise just how debilitating that it can be.

    As more and more awareness is raised, then people will start to understand it more. On one hand 20 million (diagnosed) sufferers is a lot, but in the scheme of the population of 7.5 billion, it’s not at all.

    The more awareness that can be raised, the more likely that funding will gradually increase.

    • Thanks for your understanding, Mark.

      You are correct that 20 million people affected out of 7.5 billion is not much. However, this is a much larger amount than for example, people with multiple sclerosis worldwide. This was set at 2.3 million in 2013 in a publication called Atlas of MS published by the Multiple Sclerosis International Federation. Like in my post, MS is used as a comparison because it is another neurological disease with fatigue as a primary symptom.

      Awareness is key, as you identified.