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Why I Think 'Chronic Fatigue Syndrome' Needs a Name Change

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Six years ago, I was diagnosed with myalgic encephalomyelitis (ME), or as you might know it, chronic fatigue syndrome. You may be surprised to learn the most challenging aspect of this illness for me is not the disability itself, but the attitudes of others towards me. I believe negative attitudes towards ME patients, especially in the medical community, are informed by the inaccurate, dismissive and unfortunately prevalent term, chronic fatigue syndrome (CFS).

If you have this disease or know someone who does, by now you will have realized how grossly inadequate and offensive the term “chronic fatigue syndrome” is. For those who have had their lives ripped apart by this illness, who are stuck in bed, can no longer walk or are unable to work or live independently for the rest of their lives, “chronic fatigue” is an insult. If “chronic fatigue” was all we had, would 85 percent of patients be unable to work? Would we resign ourselves to such a diminished, agonizing life if we were merely tired?

“Chronic fatigue syndrome” makes a mockery of our struggle. It encourages medical professionals to laugh at us across their desk, joking, “I’m chronically fatigued too!” It does not begin to encompass the wide range of symptoms this disease causes, from sensory disturbances, to cognitive dysfunction, blood pressure disorders, and sometimes complete failure of every single component of our bodies. It diminishes our pain and delegitimizes our lived experiences. Would you call someone who has been in bed for 15 years, unable to read, watch TV or use the bathroom by themselves, “chronically fatigued”?

The term is so inaccurate — you might as well call pneumonia “chronic cough syndrome” or Crohn’s disease “chronic shitting syndrome.” Every chronic illness is accompanied by oppressive fatigue, yet most have correct, descriptive names which do not belie the true nature of the disease. Imagine the outrage if we tried to strip other diseases of their legitimate, scientific name and replace them with a term that had nothing to do with the illness.

No, the only purpose the term “chronic fatigue syndrome” serves is to stigmatize those with it. Names are laden with meaning and act as a shorthand to understanding. What meaning does “chronic fatigue syndrome” convey? That what we experience is nothing worse than what an able-bodied person may feel at the end of a long work day or a hard workout session? Nothing could be further from the truth.

“The name [chronic fatigue syndrome] is condescending and so grossly misleading…This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called ‘fatigue’ is a gross misnomer.” – Laura Hillenbrand

In the 1980s, the name first proposed for the disease we know now as AIDS (acquired immune deficiency syndrome) was GRID: gay-related immune deficiency. The terms “gay cancer” and “gay plague” were also used. Multiple sclerosis was once known as “hysterical paralysis,” a malaise assumed to affect hypochondriacs who couldn’t cope with life. The implications of these terms are obvious and shocking to our modern sensibilities. Why, then, do we persist with the term “chronic fatigue syndrome”?

Myalgic encephalomyelitis (ME) is a term slowly replacing chronic fatigue syndrome (a mouthful, I know – it took me a long time to be able to pronounce and spell it!). “Myaglic” refers to muscular symptoms such as fatigue, pain, twitching and ataxia; and “encephalomyelitis” indicates symptoms of the brain, such as cognitive dysfunction, problems with speech, memory, concentration, balance, and sensory processing. In full, it means “inflammation of the brain and spinal cord.”

The differences between both terms are immediate and striking. ME not only sounds more scientific, it goes some way to actually describe the illness. It suggests symptoms and a cause. Most importantly, myalgic encephalomyelitis is a term that demands respect. It is the difference between “hysterical paralysis” and “multiple sclerosis.”

Some argue ME is not an entirely accurate term, as there is no hard biological evidence of said inflammation in patients. However, recent research indicates this name is medically justified. And even if it were not, I contend it is still more accurate a descriptor than CFS. There are many names which have very little to do with the true nature of the illness (e.g. malaria means “bad air”), so I suspect this argument has less to do with scientific accuracy than trying to deny already-alienated patients’ legitimacy.

Other moves have been made in changing the nomenclature of this illness. An Institute of Medicine panel recently reviewed the available evidence and found the name “chronic fatigue syndrome” affected perceptions of the illness in patients, friends and family, and medical professionals. They determined that the label trivialized the seriousness of the condition and promoted misunderstanding of it symptoms and effects. So far, so good. They then proposed a new name: systemic exertion intolerance disease (SEID). To this, I say: not good enough.

I didn’t think it possible for a more insulting term than “chronic fatigue syndrome” to be coined, but somehow they managed it. Perhaps the fact that more than half the members on the panel had no professional expertise in ME/CFS helped. SEID is another joke name, a descriptor that describes nothing. It trivializes patients’ experiences and provides yet more fodder for those who would mock our condition (“I’ve got exertion intolerance too!”). “Intolerance” implies if we avoided “exertion” (whatever that means), we would be fine, like a lactose intolerant person who eschews dairy products. And again, it fails to suggest any information about the true nature or symptoms of the disease.

Not surprisingly, this name is unpopular among the ME/CFS community. A follow-up survey of ME/CFS patients found 70 percent believed the new name lacked legitimacy, with most respondents concerned the name suggests the disease is caused by something other than a physiological disease process (such as laziness, fatigue, deconditioning or psychological problems). Half of respondents felt angry about the new name (for good reason!). A psychologist who has worked with ME/CFS for many years published some of his patients’ comments regarding the name change:

“This new name is an abomination!”

“Absolutely outrageous and intolerable!”

“I find it highly offensive and misleading.”

“It is pathetic, degrading and demeaning.”

“It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.”

“(It) is a clear invitation to the prejudiced and ignorant to assume ‘wimps’ and ‘lazy bums.’”

“The word ‘exertion,’ to most people, means something substantial, like lifting something very heavy or running a marathon – not something trivial, like lifting a fork to your mouth or making your way across the hall to the bathroom. Since avoiding substantial exertion is not very difficult, the likelihood that people who are not already knowledgeable will underestimate the challenges of having this disease based on this name seems to me extremely high.”

As much as I desire it, we clearly have a long way to go before there is any respect for the horrific nature of this disease. I will continue to use ME/CFS in my writings and attempt to educate those I know about the implications of the term CFS. I can only hope one day this illness will have a commonly accepted name which accurately reflects the devastation wrought on patients. Until then, I am resigned to explaining to people that I am not just “chronically fatigued.”

This piece is from a series about ME/CFS, originally published on Chronically Siobhan.

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Stock photo by lekcej

Originally published: November 11, 2016
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