Misleading Name - Another Smack in the Face for ME/CFS Sufferers

This article was first published Nov 2, 2012 by Toni Bernhard, J.D.* in her Psychology Today blog – “Turning Straw Into Gold: Illness through a Buddhist lens.” Toni is the author of the Nautilus Gold Medal winning book How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.

________________________

Another Blow to Chronic Fatigue Syndrome Sufferers
The misnomer “Chronic Fatigue Syndrome” once again leads to misinformation

Toni Bernhard, J.D.

What’s in a name? Apparently a lot when it comes to Chronic Fatigue Syndrome because, were it not for the woefully misleading label that’s been given to this debilitating illness, I don’t see how the American Academy of Family Physicians could have begun its new “Patient Information Sheet on Chronic Fatigue Syndrome” with this sentence:

“Chronic fatigue syndrome is a disorder that causes you to be very tired.”

I’ve been diagnosed with CFS for over eleven years. I am not “very tired.” I’m not even “tired.” I don’t fall asleep while reading or watching TV. I don’t nod off while people are talking to me. I’m not tired. I’m sick.

Among other symptoms, I have the kind of sickly fatigue and malaise that healthy people suffer from when they have an acute illness like the flu - only I’ve felt this way for 11-1/2 years straight. I call it “the flu without the fever.”

Going back to this Patient Information Sheet, in her excellent blog, “Occupy CFS,” Jennie Spotila had this to say about the American Academy of Family Physicians’ statement that CFS “causes you to be very tired”:

“A person with sleep apnea is tired. A nursing mother is tired. A perfectly healthy person studying for the bar exam is tired (ask me how I know). CFS does not make me tired. CFS causes prostration, a medical term that means a collapse from complete physical or mental exhaustion. Using the word 'tired' is not only medically inaccurate, it falsely minimizes the severity of my disease and my experience.”

You can find the rest of Jennie’s analysis of the Patient Information Sheet at this link: www.OccupyCFS.com/2012/10/17/This-Is-Why/.

I don’t write about CFS very often because my focus is on all chronic illnesses and pain conditions. But I couldn’t let this pass without comment.

Reading those words, “very tired,” felt like being punched in the stomach.

So many years of advocacy on our behalf by organizations such as The CFIDS Association and by doctors who’ve devoted their lives to helping us, and this is where we stand with the American Academy of Family Physicians: We’re very tired.

That’s about all I have to say about the AAFP. I’m upset and wanted to explain why. If you’d like, you can read more about CFS (also called ME/CFS) in my two articles, “The Stigma of Chronic Fatigue Syndrome” and “Why Can’t Medical Science Figure Out Chronic Fatigue Syndrome?”

You can also read about the mislabeling of medical conditions in “Who Comes Up with These Names? A Plea for Truth in Labeling.” 

I’ve spent years trying to get my own doctors to stop using the phrase “chronic fatigue” (both in conversation and in my medical records). “Chronic fatigue” applies to people who, for example, are overworked or overstressed. With some good sleep and a lifestyle change or two, they can recover. In contrast, “Chronic Fatigue Syndrome” is a debilitating illness that involves a dysfunction of several bodily systems, including the immune system.

Here’s the sad irony. I’ve succeeded in my efforts: my doctors now use the phrase Chronic Fatigue Syndrome to refer to my illness.

But what I’ve accomplished is small comfort because the consequence of the continued use of the terrible misnomer, “Chronic Fatigue Syndrome,” is that an association like the American Academy of Family Physicians can get away with calling me “very tired” and have that information disseminated to its 106,000 members.

I take back what I said at the beginning of this piece. I am very tired. I’m very tired of the continued lack of serious attention given to this devastating illness.

Please help raise awareness by sharing this piece on Facebook, Twitter, etc. You can also click the envelope to email it to others. Thanks so much.

___

* This article is reproduced with Toni Bernhard's kind permission. ©2012 Toni Bernhard. All rights reserved. Toni is the author of the very popular Nautilus Gold Medal winning book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Until she had to retire due to 'chronic fatigue syndrome' (ME/CFS), she was a law professor at the University of California-Davis, serving six years as the dean of students. She can be found online at HowToBeSick.com. Toni also writes regularly for Psychology Today at www.PsychologyToday.com/blog/turning-straw-gold.