Saturday, February 3, 2007

No simple solution for complex disease

People who don’t understand the causes behind CFS come up with simplistic solutions that don’t take into account the facts.

For example, I had a horrible case of insomnia for years. It was suggested that I could cure the insomnia simply by avoiding daytime naps and having set times for bedtime and rising. But the problem started when I was working full-time and didn’t have the opportunity to take daytime naps. Going to bed at the same time that I had for decades years was easy – falling asleep after I went to bed was the hard part. I’d toss and turn for hours, trying to find a position that didn’t hurt, finally falling asleep of sheer exhaustion between 5 and 6 AM. Because I was still working when the insomnia started, my alarm clock went off at the same time it had for years, so I had a set time for waking, too. But that rigorous schedule didn’t "cure" the problem; that schedule hadn’t changed in years before the insomnia started, so that wasn’t the cause of the insomnia.

Simply put, the daytime naps were not the CAUSE of the insomnia; they were the EFFECT. On 1-2 hours sleep a night, I was (as would be expected) basically non-functional. Once I’d lost my job and could take a nap if I felt sleepy, those naps were what kept me minimally functional. Taking a detailed medical history would have shown that the insomnia started a couple months before the napping started. However, that would’ve required taking more time to find a solution instead of handing me a pat answer and putting the blame on the patient.

Once I was finally put on sleeping pills that put me to sleep 8 hours every night, the daytime napping stopped almost immediately. Proving it wasn’t "depressed escapism", or "laziness", or any of the other theories proposed by people who had selective deafness where the timeline was concerned. Just as I said all along, the napping was an uncontrolable response to the constant state of exhaustion caused by sleeping only 2 hours a night, and when the sleep problem was addressed, the naps were no longer necessary to keep me functioning.

With the sleep debt out of the way, we could look at the real reason for the insomnia: unrelenting pain that kept me awake. Like the Princess and the Pea, I could not get comfortable in any position. At my worst, even a wrinkle in the bedsheet could feel like a log in the bed. But that was the fibromyalgia that developed after two years of sleepless nights. The original source of pain was arthritis/bursitis and blinding headaches that didn’t respond to medication.

Similarly, I was having daily digestive problems. I was handed a copy of the IBS diet (no acidic, spicy or greasy foods) and told to report back after I’d been on it for two weeks. I’d actually been on it for many years, so I didn’t have to come back in two weeks to know that it wasn’t going to solve the problem. The nurse asked what I ate. I’m not one of those people who has had a PB&J for lunch every day my whole life – I eat an extremely varied diet. The only thing I have every day is milk. Aha!, she said. Don’t confuse me with the fact that your digestive distress occurs BEFORE you drink the milk, my mind is already made up that you are lactose intolerant and should switch to soy milk. (Never mind that my digestive tract reacts badly to soy, and I’d be even sicker if I had soy milk, soy cheese, soy burgers, etc. She tuned me out when I said that. Soy is one of the top ten foods that people are allergic to, but that didn’t register with her. She simply assumed I was making excuses because I didn’t want to give up fast food burgers, which I rarely eat.) 

Years later, another doctor processed all the facts before making a pronouncement. If I could sometimes drink half a gallon of milk in a day with no problems, I was definitely not lactose intolerant. And if I hadn’t had pizza or tacos in over a year, it definitely wasn’t something that could be fixed by avoiding pizza and tacos. Instead of assuming that anyone who’s awake at 3 AM is stuffing her face at 3 AM, this doctor asked about my eating habits, and concluded that the real problem was that I usually didn’t eat anything between dinner and breakfast ... too much stomach acid with nothing to work on for 12+ hours. A $3 bottle of antacid pills solved the problem – take 2 at bedtime. Again, the improvement was almost immediate, because the solution wasn’t the first thing that leapt to mind, but a solution that was tailored to the actual problem based on the facts I gave, not what the doctor imagined based on statistics that most people’s digestive problems are caused by a steady diet of fast food and that most people’s weight problems are caused by overeating, not defective metabolism.

Another quick-fix assumption is that I’m allergic to my cats (except that I didn’t have cats and lived in a no-pet building when I first got sick, so there was no residual pet hair in the apartment from a prior tenant) or that I’m allergic to something in my house or office. Since the diagnosis, I’ve lived in three cities, half a dozen residences, worked in numerous buildings (including two brand new ones), and been sick in every one of them. Either every apartment and office in California is contaminated, or the problem is not something that can be avoided by moving and getting different furnishings.

This house has hardwood floors in every room but the bedroom. For several weeks, I slept in the living room, wore only clothes that had just been washed and left in the hamper in the hallway, and still felt bad, so the problem isn’t something in the carpeting.

I don’t feel any better when I stay at my parents’ house, which hasn’t had a cat in it for over 20 years, nor do I feel worse when I cuddle adoptable kittens at PetsMart. So the problem isn’t cats.

The problems, unquestionably, started with a virus that was both long and strong – I ran a 105 fever for several days; definitely not the 24-hour flu. The day before, even the hour before, I felt fine. I have never felt normal since. That virus had nothing to do with allergies or psychology. It wasn’t caused by getting a divorce or losing a job. I was simply in the wrong place at the wrong time and crossed paths with the wrong person who passed me the virus.

The diagnostic hallmark of CFS is the patient’s reaction to exercise. With depression, if you exercise, you come back energized. With CFS, you come back and collapse into bed. It’s been proven in enough studies and by enough patients’ personal experiences. Yet, practicing what Dr. David Bell calls Game Show Medicine, almost every doctor has recommended to me that I exercise my way back to health, and if I felt worse afterward, then I’d just have to push myself harder till I built up my stamina to do a full workout. The real story is that I had walked 4+ miles a day for years, to and from work. One day, I got about halfway to work and had to sit and wait for the next bus because I couldn’t make it any further. A coupleweeks later, the four blocks from the bus stop to my desk left me totally exhausted. The timeline proves that this was not deconditioning, because you don’t decondition that far, that fast, not even if you’re spending 24/7 in bed (which I clearly wasn’t, because I was spending 9 hours a day at the office where we didn’t have a bed, and another hour commuting, which required walking to/from the bus stop). The doctors who listened carefully instead of instantly jumping to conclusions could tell that the problem wasn’t caused by lack of exercise or deconditioning.

One of my doctors complained "nothing you say makes sense." And that’s true – if you’re looking for the symptoms of depression, what I describe doesn’t make sense; a lot of what I reported is directly contradictory to what would be expected with depression because (DUH!) I don’t have depression. What I was reporting was exactly, spot-on, what happens with CFS. I could’ve been reading it from a textbook. But if the doctor’s never read the textbook on CFS, he can’t put the pieces together and will continue to dismiss the patient as "not making sense". It’s the simplest way to reconcile conflicting symptoms: put the blame on the patient’s reporting.

Meanwhile, a doctor who does know what to look for will listen to those key words "I started, but couldn’t finish", "I tried, but failed", and knows that depressives don’t start and don’t try, they assume before starting that they will fail so there’s no point in trying. Running out of energy mid-task is a sure sign of CFS – once a depressive is persuaded to start something, they are pleasantly surprised that they can do it and will usually finish once they get into the swing of things. A CFS patient, to the contrary, goes into things believing that they are capable of doing it, and then finds that their body/brain simply won’t cooperate.

Similarly, CFS patients will over-estimate their performance on tests, because they are basing their estimate on what they know they used to be able to do; when I had my first SSDI Mental Status Exam, I walked out convinced that I had done too well and wouldn’t be deemed impaired enough to get benefits. I was simply horrified a few weeks later when the results came back that on memory tasks I had done "worse than a traumatic brain injury patient" and on certain of the cognitive tasks that I completed, I took several times longer than a normal person to puzzle them out. I was somewhat reassured when I learned later that the results I had on the test were precisely the results predicted by Dr. Bastien’s neuropsychological "signature" for CFS, including short-term auditory memory "worse than traumatic brain injury".

With the advent of CDC’s long-overdue recognition of CFS as a serious PHYSICAL disease, they hope to have CFS taught in the medical schools. But if the professors are unfamiliar with what it really is, how can they teach it? I fear they will tell the students it’s been proven to be a physical disease, and then continue teach them the same wrong-headed solutions that were offered to me: exercise and anti-depressants, because they’re unaware of the research proving that neither will work on CFS, and that exercise can be downright dangerous for a CFS patient. (Dr. Cheney, probably the person who knows the most about CFS, outright forbids CFS patients to do any sort of aerobic exercise, though they can, and should, stretch and flex to maintain muscle tone.)

Although the problem isn’t entirely caused by sleep disturbance, my first specialist taught me that it’s important to address the sleep problem first. Some things will resolve themselves if you’re sleeping better (e.g., my burnt-out immune system became functional again and began fighting the virus after I’d been on the sleeping pills for a few months; and with adequate restorative sleep my pain level went from an intolerable 10-of-10 to an average of 4, which is still not pleasant but isn’t bad enough to pray for death [Jeanne Hess, R.N., describes level 4 as "pain has your full attention now"]; and my digestive problems were no longer a several-times-daily occurrence). Treating the sleep disturbance first will leave you with a much smaller number of things that need to be addressed pharmaceutically.

Unfortunately, for years, my begging for a sleeping pill (or a pain pill so that I could get comfortable enough to fall asleep) fell on deaf ears and I got continually worse as the sleep debt built up and my immune system degenerated. I finally got to a specialist who knew more about CFS than the doctors I’d been dealing with, one who recognized immediately that the problem was nota patient who stubbornly refused to return to work, but doctors who stubbornly refused to accept that the patient had previously been instructed by a CFS specialist in recommended treatments for her condition, and thus really did know better than a generalist what should be prescribed.

After reviewing the medical records and actually listening to my comments about my repeated attempts to work, he was sure that it wasn’t a situation that the patient didn’t want to work, but that the patient wasn’t getting what she needed to make her ABLE to work.

He could see for himself that the only treatment I had refused to try was a prescription I had repeatedly been told not take due to a bad reaction to a related drug; he could also see that the prescriptions that should have been given weren’t in the records anywhere. No question in his mind that the inability to return to work had nothing to do with the patient, and everything to do with uninformed doctors’ simplistic solutions that had nothing to do with the actual problem being described, some of which were absolutely inappropriate and dangerous for a CFS patient and might have resulted in death.

The simple solutions may seem intuitive to the friends and doctors who recommend them, but CFS is a disease best left to the experts, who know how to listen for the difference between CFS and depression, CFS and allergies, CFS and generalized laziness..., and who know that anti-depressants and exercise and "change of environment" have no beneficial effect on a virus, and are therefore not to be prescribed to the CFS patient. The two medications that have shown to offer real improvement are both anti-virals. Not anti-depressants or pep pills, but something that addresses the root of the problem: the virus that started it all in the first place.

I was recently given pain pills for the first time in 7 years of asking for them, even begging for them, and the first morning already woke up feeling like I’d slept, which hasn’t happened often in the past 7 years. Thanks to the doctors’ ridiculous belief that giving me pain pills would turn me into an addict, I’ve lost (to date) 7 years of living my life to the fullest, 7 years of my career, 7 years of contributions to my retirement fund, and put up with 7 years of verbal abuse from people who think that all they have to do to fix my problems is tell me to get off my butt and go back to work, because they haven’t seen what happens when I do go to work.

Unfortunately, because I dealt with "specialists" who really didn’t know the first thing about treating CFS, all I have to show for the past 7 years is a pile of letters from lawyers who’ve reviewed my case saying "you got a raw deal from both the doctors and the judges". But sympathy doesn’t pay the bills for the rest of my life; I still need cash for that. So I still have to deal with a judge who ignores any evidence that he doesn’t like, including blood tests that are "off the charts" and VocRehab experts who tell him I’m unemployable, because his simplistic solution to CFS is based on the assumption that if he denies my disability benefits, I’ll be miraculously cured and inspired to return to work.

But he, like many other people, ignores the fact that I’ve been working. I did some pick-up work while I was getting Unemployment, and started my own business the day my Unemployment ran out (because you can’t start a business and collect Unemployment simultaneously, and I was playing by the rules – qualifying for Unemployment by applying for work that I thought I could do with some accommodations). The problem isn’t that I don’t want to work – the problem is that I cannot work enough hours to be self-supporting without landing back in bed after a few days.

Given my way, I would have been back to work as soon as possible after losing my job. But all the simplistic solutions in the world will not cure a virus. If I had had a prescription pad, I would’ve gotten the right pills right away, but because I had to rely on other people to get them, I couldn’t get well enough to return to work, and have been told I won’t ever work full-time again because of doctors’ incompetence. 


Friday, February 2, 2007


Since 2000, I have been asking doctors for pain pills, because the pain wakes me up and keeps me awake.  Advil, when it works, only works long enough for me to get 2 hours of sleep, and then I have to lay awake in pain until the next dose kicks in.  Sometimes, the pain would be bad enough to wake me up even after taking a sleeping pill.  It was obvious to me that the pain needed to be dealt with in order for me to sleep well enough to recuperate and return to my career.  (The only time I slept through the pain was when I was on the sleeping pill strong enough to leave me "stoned" and non-functional the whole next day.  Obviously, taking that was not going to get me back to work, even in a menial task.)

Instead of experimenting to see if something for the pain would help me sleep, I got lectures to suck it up, and prejudicial comments about how "all women" are whiny babies who can't handle a little pain, and assumptions that if they gave me narcotic pain pills for the neurologic pain that would turn me into an addict.  (Statistically, less than 1% of chronic pain patients turn into addicts who abuse their pills.  The remaining 99+% use the pills exactly as prescribed; they are dependent on them the same way as diabetics are dependent on insulin, but whoever heard of that being referred to as an "insulin addict"?)

Finally, someone who has neurologic illness in his family agreed to a trial of Tramadol/Ultram, which is the mildest narcotic pain reliever there is.  It's so mild that it's available without a prescription in Canada.

The bottle says to take one every 4 hours.  I took one at bedtime, and slept 8 hours without the pain waking me up.  More than 12 hours later, the pain is just starting to break through my concentration.  I'm thinking about a hot bath for the pain, but haven't reached for a second pill.

If someone had listened to me 7 years ago that the insomnia was connected to pain and given me pain pills instead of anti-depressants (which made me sicker), I might have been back to work full-time in a matter of months.  Instead, I've suffered needlessly for a tenth of my three-score-and-ten. According to a pain management specialist, as little as 48 hours of unrelieved pain is enough to cause changes to the nerves, which may be permanent.  One theory about fibromyalgia is that it's rooted in such nervous system changes from unrelieved or inadequately relieved pain.

Doctors take an oath to "first do no harm".  Unfortunately, so many of them are concerned about doing harm to the 1% who might become addicted that they do serious and permanent harm to the 99% who are not going to become addicts. 

It's well known that there is such a thing as an Addictive Personality; someone who is an alcoholic is more likely to become addicted to other substances, whereas someone who is able to control their drinking is equally likely to use prescriptions responsibly.  But even though I reported that I have a glass of wine with dinner once a month at most, doctors leapt to the conclusion that they could not give me pain medication because I might become an addict.  Statistics don't bear them out. 


Sunday, January 28, 2007

What exactly is CFS

A recent topic of discussion among CFS activists was the number of patients who are advocating that CFS is "just fatigue" or "doesn’t involve fatigue" or some other definition out of the norm.

How do they come to this conclusion? Because they are describing what they themselves experience. And, if they were to see a CFS specialist, they would in all likelihood be told that they don’t actually have CFS.

The name CFS was invented by CDC in response to the 1984 Incline Village epidemic, so it must be assumed that the name applies to specifically that disease and its symptoms.

Yet, over the years, the notion has crept in that it’s not necessary to have viral onset, even an auto accident could cause it. Obviously, if one set of symptoms is caused by a virus and another is caused by an auto accident, you’re not talking about the same disease. It’s well-accepted by the medical community that pain can cause fatigue, and pain can disturb sleep, so we don’t dispute that someone in pain following an auto accident may feel fatigue, but it is quite clear that what they have isn’t what we have.

Over the years, as the definition has been expanded from "post-exertional malaise" and "exercise intolerance" to incorporate chronic fatigue of any origin, those hallmarks of true CFS have been watered down. "Post-exertional malaise" refers to feeling awful for more than 24 hours after either physical or mental exertion; if you come home from a 3-mile run today feeling tired, but are able to go out for a 3-mile run tomorrow and the next day, that’s not it.

In order to prove my point to disbelieving doctors that I could not exercise my way back to health, I took a one-mile walk every day for a week. The first day, I came home really tired, more tired than a slow walk should leave you. The second day, I came home and collapsed into bed. The third day, I had to really force myself to go out for the walk because I felt so awful when I woke up already, came home, collapsed into bed, and fell asleep for a couple hours. By the seventh day, I was no longer able to get out of bed at all. That fits the definition of true CFS, and the research that proves that the muscles have an abnormal response to exercise, and take an abnormally long time to rebound. The experts will tell you that if you can exercise, you don’t have CFS.  And if you improve with exercise, you definitely don't have what the experts mean when they say CFS.

The neurological symptoms of true CFS have also fallen by the wayside as CFS has been diluted by inaccurate definitions that are more appropriate to the symptom of "chronic fatigue" or a psychological condition.

Unfortunately, too many doctors who have never read the diagnostic criteria or the international consensus definition hand out an inaccurate CFS diagnosis to their patients, who then go around telling the world that their symptoms (which might really be depression or hypothyroid) are the symptoms of CFS, and dismissing any symptom they don’t have as "that’s not part of CFS".

The real problem is not the patients, who have a legitimate reason to believe their doctors have given them an accurate diagnosis, and that, therefore, their symptoms accurately describe the illness they’ve been diagnosed with. The problem is the uninformed doctors who think that any case of chronic fatigue is Chronic Fatigue Syndrome, whether it started with a virus or not; whether the patient has a sore throat, fever or swollen glands or not; whether the patient improves with exercise or becomes worse; those who don’t rule out depression or other illnesses which could cause fatigue.

The CDC diagnostic criteria require "four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours" in addition to the fatigue. Yet, many doctors make the diagnosis just on the reported fatigue, without the existence of any other symptoms required by the diagnostic criteria.  (In fact, if I'm getting adequate rest, I don't feel fatigued at all.  I feel pretty darn good ... till I get off the couch and try to do something and run right smack into that exercise intolerance.)

Only by using the correct diagnostic criteria for CFS can we determine the truth about CFS, also known as Myalgic Encephalomyelitis, also known as Post-Viral Fatigue Syndrome. The international consensus definition is available at

One reason why CDC’s website says "No single therapy exists that helps all CFS patients" is because too many people classified as "CFS patients" actually have something else entirely. Eventhe government’s research pool has been polluted by people who have fatigue related to stress, depression, or burn-out, rather than those whose fatigue started with a virus. I remember claims 20 years ago that doctors were miraculously curing people of CFS with blood pressure therapies, thyroid medication, etc., claims that weren’t able to be reproduced when tested on people who’d been diagnosed by the CFS experts. Every one of those claims was disproven in the long run by proving that the doctor who got his 15 minutes of fame had misdiagnosed these patients who didn’t have the right symptoms for CFS; they were cured with blood pressure or thyroid medication because that was their problem all along.

Others are touting dietary changes as the solution to CFS.  No, getting rid of gluten fixed Celiac Disease, which has some symptoms in common with CFS.  My health didn't improve in the least when I went on a restricted diet.

If you don’t have the symptoms listed for CFS, then you probably have something else, no matter what your doctor told you. What helped you may not help someone who has true post-viral CFS and, in fact, could be deadly. So, if those of us with the post-viral version refuse to follow your advice, it doesn’t mean we don’t want to get better – it means that we’ve read the experts’ opinions that it isn’t advisable for what we have.

Do yourself a favor -- go to a CFS expert and get the right diagnosis.  Then get treated for what you have.  Anti-depressants and thyroid pills didn't help me in the least; neither did consuming lots of salt to raise my blood pressure, nor dietary changes. 

What helps me is what the CFS experts have always recommended: don't overdo, get plenty of rest and improving the quality of sleep so the body can get the deep sleep necessary to start to heal itself.  When someone finally addressed the fact that I was only sleeping from 5 AM to 7 AM after tossing and turning all night, my immune system started working again, as evidenced by a months-long fever while it fought to get the upper hand over the virus again.