Why Is Chronic Fatigue Syndrome Still a Mystery?

3. The paucity of money allocated for research into Chronic Fatigue Syndrome.

The third reason that Chronic Fatigue Syndrome remains a mystery is that little money is allocated for research into causes and treatments. I’ve written about this before and so, instead of repeating what I said, I’ll refer you to Jennie Spotlia’s excellent blog “Occupy M.E.” In the following link, she tracks the amount of funding that the National Institutes of Health allocated for research in 2015: “2015 NIH Spending on ME/CFS Studies.”

One reason why proper research is crucial to solving the mystery of Chronic Fatigue Syndrome is that it’s highly likely that it’s not one discrete illness but, instead, several subsets of illnesses. This would account, in part, for why many people with a CFS diagnosis suffer from symptoms not experienced by others with a CFS diagnosis. For more on this, see my piece: “Why Can’t Medical Science Figure Out Chronic Fatigue Syndrome?”

4. The absurdity of the name “Chronic Fatigue Syndrome.”

I wrote about this in Chapter 37 of my latest book, How to Live Well with Chronic Pain and Illness:

The “fatigue” of chronic fatigue syndrome bears no resemblance to the fatigue that people experience after a bad night’s sleep. As many people have pointed out, calling this illness “chronic fatigue syndrome” is like calling emphysema “chronic cough syndrome” or Alzheimer’s “chronic forgetfulness syndrome.” The fatigue of chronic fatigue syndrome is often described as a bone-crushing fatigue. I call it bone-crushing and sickly fatigue.

The designation “Chronic Fatigue Syndrome” traces back to a decision made at the Centers for Disease Control (CDC) in 1988. The name trivializes the illness and keeps it from being taken seriously by medical researchers and most health care practitioners.

The unfortunate name also contributes to the over-diagnosis mentioned in #1 above. When a patient presents with symptoms of fatigue but standard blood tests don’t show anything abnormal, some doctors, not wanting to investigate further (or not knowing how to), just tell the patient that he or she has Chronic Fatigue Syndrome.

Lastly, a serious problem that stems from the misnomer “Chronic Fatigue Syndrome” is that the illness gets confused with “chronic fatigue.” The latter is a condition that has many causes but it is not an illness in itself. Chronic fatigue is a symptom that’s common to most chronic illnesses (from autoimmune diseases to cancer). In addition, chronic fatigue is often a side-effect of medications. Finally, chronic fatigue might be the result of too stressful and too busy a lifestyle, in which case it can be successfully treated by changing one’s daily activities and getting more sleep.

© 2016 Toni Bernhard. Thank you for reading my work. I’m the author of three books:

How to Live Well with Chronic Pain and Illness: A Mindful Guide (2015)

How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (2013)

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers(2010)

All of my books are available in audio format from Amazon, audible.com, and iTunes.