New Video: Chronic Fatigue Syndrome is a terrible name

Chronic Fatigue Syndrome is a terrible name for a disease. Doctor Anthony Komaroff, who was part of the original group that came up with the name, said it was a big mistake because it trivializes and stigmatizes the illness.

The name Myalgic Encephalomyelitis had been in use since the nineteen fifties, but in nineteen eighty eight the CDC decided on a new name, Chronic Fatigue Syndrome which does not convey the severity or the nature of the condition.

ME is not just fatigue; it's a serious, long term disease with a wide range of symptoms.

Fatigue isn't the most important symptom either. Patients have an energy impairment that dramatically limits their activity. When they exceed their available energy, they experience a worsening of symptoms that can last for days, weeks, or even months.

Everybody experiences fatigue, which means people often assume it's just being tired all the time.

But the fatigue patients experience is completely different, It's a severe, persistent, exhaustion that can be profoundly disabling.

Laura Hillenbrand, the award winning author said it's like comparing a match to an atomic bomb.

To make things worse, the name is often shortened to Chronic Fatigue, which is not a disease, but a symptom associated with many conditions, like Cancer and Depression.

The name of a disease is important because it can influence people's attitudes, including those of healthcare professionals.

Many doctors are dismissive, making comments like “I'm fatigued all the time too.”

The diagnostic criteria for Chronic Fatigue Syndrome have also been criticised because they can include people who don't have ME. This has led to unreliable research, as well as confusion among patients and healthcare professionals.

The majority of patients prefer the term ME and most health agencies and researchers now use the term ME/CFS.
 
Trish said:
I love that your videos are so short. It's possible to use them in contexts where a longer video wouldn't be possible, for example I can imagine picking a one or more of them to show to a new carer or clinician to help explain ME.
Click to expand...

Thanks Trish, that's what I was aiming for. I rarely have the energy to explain things and when I do I struggle to it well.
 
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