Monday, June 02, 2008


"It's all in your head!"

Worn Out Man
When Chronic Fatigue Syndrome first became nationally noticed, it was generally considered a result of the Epstein-Barr virus, and was called "Yuppie Flu" by the media, and "shirker syndrome" by less kindly voices. It was connected with Yuppies because it was the rich, upwardly mobile former hippies who had the money and ability to get top level research done on their ailment and connections to the media to get it reported.

The malady became more famous in the late 80s but in truth it has always been around. Read older literature and there has always been a small portion of the population who are weak, sickly, unable to do as much. Usually they were unable to eat or find shelter or were forced to work anyway and died young. It was called various things over the years, for example in the 1700s Febricula, in the 1800s DaCosta's Syndrome, in the early 1900s neurasthenia and myalgic encephalitis were used.

Some have always considered these people to be slackers. This syndrome was considered an excuse to be lazy, all in your head. Clearly "feeling tired all the time" was simply the result of sloth and lack of ambition, if you only tried you would be fine, but you're weaker and looking for an excuse to stay at home and in bed. Feeling achey and sick was just the result of a lack of exercise, clearly if you got out and worked, you'd get better. Instead, you got worse, and some eventually just died if they were forced to continue.

As doctors examined the symptoms and the malady, they changed the name to Chronic Fatigue Immunodeficiency Syndrome (CFIDS) because of how it appeared to work. The symptoms were very broad and differed from case to case. Some complained of chronic headaches and sore throats, others of muscle weakness and cramps, joints aching, others fevers and general fatigue, and so on. The syndrome (for it was not a disease, but rather a series of related maladies the doctors could not pin down) was for years a mystery.

Researchers examined the victims closely and over time found several diseases that were previously unidentified under the umbrella of CFIDS. Fibromyalgia for example is a disease where the body is painful and tender all over, almost constantly. Doctors are not exactly sure what causes this, but it was one disease that they isolated from the general syndrome of CFIDS. Over time, the name was changed to CFS, just plain Chronic Fatigue Syndrome, and in the United States, millions were appropriated for the Centers for Disease Control, but it has been found out recently that this money has been diverted to other diseases instead of what it was legally meant for (CFS research). Chronic Fatigue is not the political issue that AIDS is, for instance, so it's not as popular to work on.

Over the years, the theories of what causes CFS have changed from bad humors (your mood and attitude adjusts certain fluids in your body that causes sickness) to various infections such as the Brucella virus or Mononucleosis that persists rather than ends over time (which is what Epstein Barr was based on), and even hypoglycemia or an adverse reaction to sugar.

In time it has become clear that CFS is not a single malady, but group of unknown problems that have similar symptoms. Thus, the cause cannot be pinned down to a single source. For some it could be genetic, for some food allergies, for others a virus, and so on. As individual diseases such as Lyme Disease are discovered and pulled out from under the CFS umbrella, more is learned. In Europe, CFS is known more commonly among doctors as ME, or Myalgic Encephalomyeltis/Encephalopathy.

At this point, doctors diagnose CFS in a patient if they suffer from at least four of the following symptoms:
  • Poor memory or reduced concentration
  • Sore throat
  • Sore lymph nodes in the neck or under the arms
  • Pain in the muscles
  • Joint pain, without evidence of swelling or warmth
  • Headaches (either increasing in severity or of recent onset)
  • Need for more sleep despite getting plenty of sleep
  • Feeling unwell for a day or more after physical activity
Women are affected by CFS twice as often as men, but no one is exactly sure how many people have the ailment primarily because it is difficult to pin down. Being tired constantly is something people just come to expect, they don't usually go to the doctor about it. You can function, some days almost as normal, so there's no pressing need to get research done. According to the CDC, approximately 2.5% of the population suffers from CFS worldwide, which is about 7.62 million in the United States alone (by way of comparison, it is estimated that from 1.5% to 3% of the population is homosexual).

Worn Out Old ManFor some, CFS comes on suddenly, like the flu or some other malady. This is why it was considered for a long time to be due to an infection. For others, it develops over time slowly with increasing debilitation. For still others (such as myself) it appears to be present from early childhood, growing more pronounced as time goes on. In my experience, the more I push myself and try to ignore the disease, act like it isn't real and function like a normal person, the worse in the end the CFS becomes. In other words, following the advice of the unknowing results in greater sickness. Exercise more, work harder, push, ignore it makes me sicker in the end, so that I can do even less.

The writer of Seabiscuit, Laura Hillenbrand, suffers from CFS, which made writing the book that much more challenging.
It started in a very typical way--very suddenly. Prior to that, I was a straight A student, perfectly healthy. I was a very serious athlete. One evening I was driving back from spring break. I think I ate something that was bad earlier that day and I developed food poisoning.

For about two weeks, I was very sick. With CFS, it's typical to have a triggering problem. It could be food poisoning, a bad flu, pneumonia. I woke up two weeks after getting the food poisoning and I simply couldn't sit up in bed.

The biggest problem has been exhaustion. I've spent about 6 of the last 14 years completely bedridden. At times, I have been unable to bathe myself. I have gotten so bad I couldn't really feed myself and a couple of times I needed someone to spoon feed me. I have had trouble rolling over in bed.

Right now my exhaustion is bad enough so I'm 100% housebound. I've only been out of the house three times since my book came out two months ago.
Almost everybody gets night sweats and chills. I've had a fever for 14 years. Some people have very severe joint pain and muscle pain.
She describes how she lost 22 pounds and suffered from skepticism and even personal attacks. By the time she finished the novel, she was completely bedridden and barely able to move. The novel, she says, was inspiring and helped her go on when she felt she could take no more; the story of triumphing over almost unbelievable adversity was a boost for her. Turns out the novel was a huge success and made into a movie - anyone who has seen it or read the book understands why, it's such a terrific story.

Yet this story is not uncommon and most who suffer from this ailment do not write best-selling novels and get movie deals. For men, it is even more destructive to their lives. Unable to work or support a family, unable to exercise their strength in typically masculine ways, men are demolished personally, feeling useless, weak, purposeless. Each morning is a challenge just to care enough to get out of bed. Doctors see this and prescribe anti-depressants, when the CFS is the cause of the depression, not the other way around. How exactly would you feel if you were tired out so much by a typical slow day for a normal person that you spent the next in bed?

Generally speaking, doctors are incredibly healthy, they are the kind of person who never gets sick, or if they do it doesn't last very long. Surrounded by illness, they just don't seem to catch it very often. Like most people in this condition, they can be a bit unsympathetic toward ailments they are unfamiliar with. It can be very difficult to find a doctor who doesn't just throw Xanax at you after listening to your complaints. Miss Hillenbrand had to go to the John Hopkins institute to get a doctor to listen. Most people who hear about your sickness do not respond sympathetically, or do with (often thinly) veiled disbelief. They might say the right things but their eyes and attitude say differently. After a while you just stop telling anyone about it or become very vague.

When you have a headache, you can tell people and they wince, understanding. They've had headaches before, they understand what it is like. Their shared experience prompts empathy, even if they cannot see any slightest sign of the problem. You may look completely healthy, you may show no symptoms of any trouble at all, but your head feels like someone is using a jackhammer on it. That's what it is like to have CFS: I look perfectly healthy, I seem fine. I don't have a third arm or red welts, I don't have to sit in a wheelchair, there's nothing visible wrong with me.

Because being tired is something everyone experiences, but gets over in a hurry, they think they can empathize but most cannot because they associate what you say with what they've felt. Sure, I've been really weary, a good night's sleep does the trick, then I can get back at it. For someone who suffers from CFS, the weariness sometimes will happen without discernible cause or logic. You have good days and bad days, without pattern. Sometimes you can have bad weeks or even months. For some reason, roughly November to January is very hard for me, I'm always sickest and weakest then.

For the CFS sufferer, minor labor is incredibly tiring, heavy labor is so sickening you can't move for hours and are days before you can get out of bed. I can wash one drain basket full of dishes before I have to sit or lie down for a few hours in exhaustion. This is not precisely emboldening as a man. Simply moving into the house made me have to stop working and lie down, unmoving, for four hours. I didn't even feel like lifting a cup of water to my mouth.

Usually the symptoms are a headache, typically one that if I do not immediately rest builds to such intensity that the slightest sound or movement makes me feel like screaming - except that would make it worse. I've beat my head against a wall trying to make the pain go away, it simply is unbearable. When this happens, my whole body feels like the worst sort of fever: weak, shaky, my hands tremble uncontrollably, I run a fever of a few degrees. My bones and muscles ache in every part, my eyes hurt. Concentration and memory are very difficult, I have a hard time thinking of words in the middle of a sentence. My stomach rebels, sometimes I vomit but usually it just feels awful. Overall there is a complete sense of malaise, an overall illness that is indescribable but awful.

Tapped OutThe only answer to this is rest. No pill, no remedy, no food, nothing helps but rest. I get a small amount of relief from the headache if I take an Alka Seltzer Plus (the cold medicine) - nothing else makes any difference - but only if I also rest. And by rest I mean lay completely still, like a corpse, for at least an hour, in darkness and silence. After an hour or two I can move some. After a few more hours I am able to read or watch television, lying down. It is, I believe, similar to an incredibly powerful hangover, but without the ready remedy of further drink.

Now, the trick is, for a time I can push all this aside with sheer willpower and keep going. I am not sure if it is adrenaline or just determination, but I can ignore this and focus to the point of being able to think normally and act long enough to get a job done, finish teaching a class, for example. Then I feel the full impact of the weariness, something best described as a "crash."

Even before this point I can be in a walking wounded state, not quite sick but weary to the point of confusion. I tend to make the most mistakes at this point, dropping things, forgetting things. This tends to make me irritable, feeling like an idiot: I know I can do better.

CFS is, of course, incurable at this point, and there is no reliable treatment. Exercise can keep the symptoms from being as bad, but the problem is exercise also makes you weary, which causes the symptoms. In other words, the better shape you are in the more you can do without being as exhausted, but in order to exercise, you become exhausted. So inevitably, slowly, you lose that top end of what you can do a little more every year until you can barely exercise at all. Some are able to do more than others, which makes the syndrome even more confusing.

I've never gotten to the point I had to have someone spoon feed me - when I've been that sick I haven't been able to eat at all. I've never been bedridden longer than a week. My mother, who also has CFS can do things I cannot, and I can do things she cannot, it simply is not a consistent pattern.

Some day there may be a better diagnosis for CFS and perhaps a cure for it. At present the efforts are still theoretical but treatments such as powerful antiviral injections have made some feel better. There is some hope; the ailment is becoming more accepted and agreed upon by doctors. Some day I hope a future generation will be able to cure this, or at least lessen the symptoms. At present, we just make it as best we can.

You learn how to pace yourself, do a little at a time to get a big job done, rest more, eat well to make sure you have plenty of fuel. The strange thing is, despite having little exercise and eating well, very few sufferers of CFS are overweight, which is a clue of some sort in my mind. I've found that by avoiding sugar (and all sugar substitutes), caffeine, and dairy products I do much better. When you feel more ill, you do less. You plan out your week ahead of time very carefully so that you have plenty of time to rest between extra outings. You learn to say "no" a lot when people ask you for extra, especially at the last moment. You stop having people over, you keep a more strict schedule of sleep and eating. You adapt.

If you ever wondered why this blog doesn't update all day with dozens of articles, now you have some idea why: the work I get done is about all I have to offer. I hope it's enough.

If you want to donate to help with research on this disease - and believe me it gets very little support - here are some links:


Eric said...


It is a shame there isn't a more objective testing method to diagnose this malady. I've worked with people who I am fairly sure were faking it, and I've also known people who unquestionably suffered from it. The symptoms are easy enough for a person to fake, so a healthy person can get a diagnosis and have an automatic day off work whenever they feel like it... which, of course, unfairly damages the credibility of all the people who are legitimately suffering.

The few people I've known who really suffer from CFS are always battling the temptation to use stimulants to give them an energy boost, and a woman I once cared very deeply for even developed a methamphetamine addiction which, of course, left her much worse off than she had been before.

I've had times working out in the heat all day where I've hit my physical limit, and just had to lie down wherever I was and close my eyes and fight off waves of weakness, nausea, and headaches (this get more common as I get older). I can't imagine what it would be like for that sensation to come on for no reason and stay for days, weeks, or months. All things considered, I think it is fairly amazing that you post as regularly (at least 3x a day, like clockwork) and as thoughtfully as you do.

Anyway, thanks for posting this. I remember you mentioning being in poor health a few times, and have wondered about it. With all the progress they are making in medicine, hopefully they will stumble across a cure soon.

Christopher Taylor said...

Thanks for the kind thoughts, now that you mention it, Sunstroke does feel a lot like whatever the hell that crash is, probably related physiologically.