Name It, then Put It into a Box, It's Human Nature

It’s one of those nights when sleep won’t come. So I decided to get a snack and purge the philosophical thoughts that have floated in and out of my consciousness in the last few months.

Have you ever noticed the human need to categorize and name things? One can only assume and reason we inherited this need from our creator. Nature is categorized by species. The Bible says creatures are to reproduce according to their kind. Dogs mate with dogs and produce dogs. Watermelon cannot mix pollen with green beans and produce tomatoes.

So in addition to biblical instruction, God put in a natural species barrier that separates living things. (sidenote, this is why I don’t think it is right to mix species genes through genetic modification.)

And, according to the Bible, the first thing Adam was to do is name everything in his garden. A name is a way to distinguish one thing from another. So along with names or labels, we have definitions.

Saying what something is and what it is not is necessary for communication. And science has proven we have an inborn need to communicate. A child neglected, with no communication with parents, will not develop normally. A name that identifies something is one of the first concepts a baby learns. Remember in the movie how Helen Keller’s biggest breakthrough was learning a word to distinguish water from other things? Understanding naming and definitions changed her world.
As a communications specialist by trade, I analyze words and their definitions daily.
However, some categories go beyond the natural groupings. And some things defy definition, so finding a good name to distinguish it will be imperfect.

A good example is race. Races developed by people separating geographically and marrying within that group. The dominant genetic physical characteristics of that group became more prevalent in each generation until the group had a common look. But this is not a natural division as different races mate with no physical problems. The chromosomes match. We are all one species. So a manmade label of “race” and category is not scientific. And actually, we are seeing the gradual dissolving of racial division with global transportation and marrying practices.

In addition to species, scientists decided to form larger categories such as reptiles, mammals, insects, etc. Are these groupings by physical similarities a natural division or manmade? I purport that they are manmade. I believe our creator views the divisions of species, but not the classifications, as they are called. And in addition to classifications, scientists further categorize animals into family and genus. Are these categories, based on physically common characteristics, a similar manmade attempt as separation of humans into races?

Exhibit A is the platypus. If these classifications and other categories were God-designed, then which one does the platypus fall in? It has the bill of a duck, lays eggs like a reptile and has hair like a mammal and suckles its young like a mammal. And it has a poisonous stinger like a sea creature. It is such a mish-mash of animal traits that discoverers' descriptions and pictures of it were first thought to be a hoax. Or is it just appropriate to say it and all animals don’t have to have these layers of categorization? Why can’t it just be the platypus species, breeding within its own kind?
I'm sure the platypus is not the only one. Tomatoes are eaten and thought of as a vegetable, but it is classified as a fruit by scientists.
And this brings me to what got me thinking about names and categories. The disease I have is like the platypus. It has so many things wrong in so many body systems that it doesn’t fit into one category of medicine. Who is the specialist when the immune system, neurological system, endocrine system and metabolic system are all going awry? Instead of all seeing their piece, doctors push the patient on in a merry-go-round of office visits with each saying, “not my specialty.” When I searched for a doctor and a diagnosis, I had quite a few tell me they knew what I had, but they don’t treat it. Problem was the next doctor they sent me to said the same thing.

How does a person find the experts for a disease when it doesn’t fall into a manmade category of experts? Does this expose the flaw of categorizing illnesses by body system affected? Is there another way to practice specialized medicine without categories?

And then there is the name and definition. This is also a problem with my disease, so much so that the Institute of Medicine has taken up a study to come up with a better definition (diagnostic criteria) and likely a new name. A name is needed to communicate, express or convey accurate thought. But the manmade term “chronic fatigue syndrome” does not accurately convey the reality of the disease. For one, there are short bursts when I don’t feel fatigue. It may only last four hours at the most, when it happens, but someone seeing me during that time would think I have nothing wrong with me. They don’t see me the days I can’t sit upright in bed for more than an hour, even having to have my head horizontal.
And fatigue, severe and coming and going, is not the only symptom. This disease has at least 60 on the list (including insomnia), many of which are also seen in other diseases and also vary patient to patient and change according to disease stage. How do you define this disease? How do you categorize it? Like the platypus, it’s parts of everything else and different in each patient.

If they knew the perpetuating cause of the multiple dysfunctions and symptoms, we could put it into a category. Science has learned much of what is going wrong, but hasn’t figured out why.
What name do you give a disease that defies definition? “Maylgic encephalomyelitis” is the second most common name (there are many others), yet this focuses on the neurological when the immunological dysfunction may be the bigger factor. I do not envy the 15 members of the Institute of Medicine study committee who must find a way to distinguish this disease better than has been offered by previous definitions. Some of the current diagnostic definitions or disease criteria are better than others, but none are perfect, which is why the Institute of Medicine is doing a study.

In their recent public meeting, one of the members asked the public for suggestions on a name.

One symptom that does seem to be noticeable is a delayed exacerbation of symptoms after activity, either mental or physical. In most diseases, exercise makes symptoms better. But 8-48 hours after what most people would consider normal activity, I have a “crash.” It starts with a hoarse voice. Next is fatigue, like I’m coming down with the flu. Then the headache. Then hot and cold flashes. And then the nausea and vomiting. And the mental fog comes amidst all of this. The more I push, the more I pay. If I stop and rest (lay down for an hour or two), I might just have severe fatigue and mental fog for a few days. It all depends on when I stop and rest and my ability on that day, which varies.
However, this symptom is seen in other diseases, but to a much milder level. MS, RA and lupus have also had studies that document increase of symptoms following physical stress. In fact, quite a few diagnosed with MS actually have my disease and vice versa, studies show. So is the severity of this distinguishable enough to define the disease? We will have to see what they come up with.

One thing is for sure, the medical care structure demands the disease have a better name and definition and an assigned category so patients can receive expert healthcare. Humans are driven to distinguish by name and definition and categories.

Comments

  1. Tina, you've always helped me to think clearly on matters with your very insightful articles. But, I believe (probably just because of my own understanding of this illness) you have truly hit the nail on the head.

    I also do not envy the people who are trying to decide a name for this debilitating illness. Although I have not been formally diagnosed with ME or CFS (whatever you want to call it for now), I have a diagnosis of Fibromyalgia and Chronic Myofascial Pain which I am convinced is related. Because my symptoms are very similar, I sympathize and empathize with any going through this. The symptoms can be so random at times, it would be difficult for most people to determine exactly what it is.

    The more that is written and shared with others, the more educated people will be on how to cope or help their loved ones cope.

    Thank you for your article.

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