It’s been a little over a year since I wrote a piece that garnered a lot of attention: “The Stigma of Chronic Fatigue Syndrome
” (known in some countries as Myalgic Encephalomyelitis or ME). Since that time, little has changed for me regarding my own illness. I’ve had two more encounters with doctors like the one I shared in the earlier piece. In both instances, upon seeing the diagnosis “Chronic Fatigue Syndrome” on my chart, they changed their attitude toward me—and not in a good way.
One of the doctors suddenly began to speak to me in an overly slow and childlike voice, as if I were incapable of understanding what she was saying. This behavior is called infantilizing—defined in the dictionary as “treating someone as a child or in a way that denies their maturity.” All I was doing was sitting upright on the exam table—like the adult I am—while she looked at my outer ear which had become infected from getting water in it. And so it goes.
Why has there been so little progress in treating CFS?
I’m a layperson, but this is the problem as I see it. People who suffer from different illnesses that medical science has yet to isolate are lumped into the one designation: Chronic Fatigue Syndrome. As a result, when a study is conducted on CFS-diagnosed people, researchers aren’t looking at people who have one discrete illness. No wonder studies tend to yield little valuable information. And, no wonder when a study does appear to show something significant, it can’t be duplicated in other CFS “subjects.”
If Chronic Fatigue Syndrome is, indeed, several discrete illnesses, until they are isolated from each other and studied individually, little progress will be made in finding effective treatments or cures.
To complicate matters, not only is there a lack of agreement on the need to isolate these illnesses, but the ability to do so is impeded by another phenomenon: people with illnesses that have been isolated and named, often have the diagnosis “Chronic Fatigue Syndrome” added on by their doctors. This happens because doctors don’t understand that “chronic fatigue” is a symptom of many debilitating illnesses. But “chronic fatigue” is not “Chronic Fatigue Syndrome.”
This mislabeling has several adverse consequences. First, it makes it all the more difficult to separate out the discrete illnesses that are suffered by people with “real” CFS. Second, once this group of people who have a non-CFS illness are labeled as also having CFS, they are added to the pool of those who might become subjects in CFS studies, and this can seriously muddy a study’s findings.
One of the consequences of failing to isolate discrete illnesses
Because those of us with a CFS diagnosis are lumped into one group, when we read about CFS-diagnosed person being cured by a treatment, we rush out and spend hundreds, sometimes thousands of dollars on it, only to be terribly let down and possibly further harmed. Since writing How to Be Sick, I’ve lost count of the number of cures that well-intentioned people have suggested to me. But there’s no reason to believe that these cures would be effective for my particular constellation of symptoms.
If Chronic Fatigue Syndrome is several discrete illnesses, it makes sense that some people will be helped by a particular treatment, while others will not. It’s finally dawned on me that it doesn’t make sense to spend money on a treatment just because it helped or cured another person, when the two of us are unlikely to even have the same illness.
I have yet to find anyone who is sick in the same way I am sick
I was diagnosed with Chronic Fatigue Syndrome in January of 2002, six months after contracting a serious viral infection. In the 10+ years since I’ve had this diagnosis, I have yet to find a single CFS-diagnosed person who shares the same constellation of symptoms that I have. (I should add that other conditions and illnesses have repeatedly been ruled out by my diligent Primary Care Physician, such as Lyme Disease, autoimmune disease, heart disease.)
I know that people can have the same illness without all of their symptoms overlapping. But, if Chronic Fatigue Syndrome were one illness, I’m positive I’d have found at least one person by now whose symptoms are almost identical to mine. But I haven’t. And it’s not just my particular case. When I read a description of a CFS-diagnosed person, his or her symptoms never even approach a 100% overlap with any other CFS-diagnosed person I know or have read about.
The only symptom everyone appears to have in common is “post-exertional malaise” (PEM) which refers to a bad flare-up of symptoms after a period of physical or mental exertion. Which activities trigger PEM and how long it takes to trigger it varies from person to person. I know from personal experience how horribly debilitating PEM is. But I also know people with non-CFS illnesses who suffer from PEM—a friend with Multiple Sclerosis is one example. Aside from PEM, the variation in the constellation of symptoms among CFS-diagnosed people is staggering and supports the view that CFS is not one discrete illness:
- Some people suffer from terrible muscle and joint pain; others are relatively pain-free.
- Some people suffer from a debilitating fatigue, but not a sickly one; others suffer from a sickly fatigue, as if they have a permanent flu.
- Some people’s fatigue is similar to that in narcolepsy—they’re sleepy all the time and have trouble keeping their eyes open; other people’s fatigue is similar to what typically accompanies other illnesses—they feel a deep heaviness and lack of energy, but they’re not sleepy.
- Some people have tender lymph notes and chronic sore throats; others do not.
- Some people pick up any virus or bacteria they’re exposed to; others appear to be immune from these acute illnesses, as if their immune system is on high-alert all the time.
- Some people suffer from dizziness or serious vertigo; others do not.
- Some people suffer so badly from Orthostatic Intolerance that they can’t stand up for more than a few minutes at a time; others don’t have this problem.
- Some people wake up in morning as unrefreshed as when they went to bed; others find sleep to be restorative or partially restorative, even if only temporarily.
- Some people have blinding headaches; others do not.
- Some people have terrible night sweats; others do not.
- Some people have chronic digestive problems, including nausea, bloating, diarrhea; others do not.
- Some people suffer from debilitating heart palpitations; others do not.
- Some people have an extreme sensitivity to light, sound, and/or physical sensations on the skin; others do not.
- Some people suffer from cognitive difficulties that seriously impair their memory and/or their ability to concentrate; others do not.
- Some people’s symptoms appeared and worsened gradually over a period of months or even years; other people’s symptoms appeared immediately on the heels of an acute illness, such as the flu or another infection.
Does this parade of “symptom variation” and the notable lack of overlap in the constellation of symptoms from one CFS-diagnosed person to another sound like we could possibly be talking about one discrete illness? It’s time for the medical community to acknowledge that Chronic Fatigue Syndrome is not one illness and to begin the difficult task of separating them out.
No one should use my analysis as an excuse to claim that CFS doesn’t exist (as many of us have cruelly been told). We are sick. We are just not all sick with the same discrete illness. I’m weary of reading about a CFS-diagnosed person’s symptoms and saying to my family: “I don’t know what she has, but it’s not what I have.” Every time I say this, I feel both frustrated and deeply sad for both of us.
And, it drives home just how far we are from finding out why we’re sick and how we might get better.
See this follow-up article: Another Blow to Chronic Fatigue Syndrome Sufferers.
© 2012 Toni Bernhard www.tonibernhard.com
Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.
I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.
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