Please note: All files marked with a copyright notice are subject to normal copyright restrictions. These files may, however, be downloaded for personal use. Electronically distributed texts may easily be corrupted, deliberately or by technical causes. When you base other works on such texts, double-check with a printed source if possible.

A Life Redirected

The Story of an Illness

by Karl-Erik Tallmo

(på svenska)

    The article is also available as PDF for better printing.

AS I WOKE UP one morning in May 1993, everything changed. Life changed. It would turn out, this was a day of the kind that constitutes a demarcation. Everything that had happened in my life would from then on be categorized by if it had occurred before or after that particular date. Life took a new direction.

I had been to a party the evening before; maybe I had had a little more to drink than usual, and now I woke up with horrible contractions in my stomach, sending a sense of backward suction through my chest up to my heart, which seemed to skip a few beats or beat out of rhythm. I was also extremely sensitive to light, and a strange kind of fogginess had settled over my brain. Could it be some sort of powerful hangover? I never had hangovers, not even mild ones. Could it be a heart attack? At 40 years of age? I was very alarmed indeed.

The contractions came at irregular intervals, at the most with a few minutes in between. Each time, I felt I had to give myself a blow on the chest with my fist, as if I had to keep my heart pounding. I really had the feeling it would stop, each time that sucking feeling came up from my stomach. Then I thought: mid-life crisis. It's probably something mental. I had not experienced any anguish as my 40th birthday approached, but I certainly lived under a pretty hard pressure and stress. And this was something one had learned, the insidious working ways of the subconscious. So, the same morning I got to the psychiatric emergency ward at the St. Goran Hospital in Stockholm. A doctor talked briefly with me, and I got some tranquilizers, but no real help.

”At the dinner table I might unexpectedly get so extremely exhausted and dizzy, that I immediately had to go to bed. I could sleep the whole day. I could sleep for two days. I slept and I slept - and woke up even more tired than when I went to bed.”

This was the prelude to a ghastly period. I could experience seconds of blackouts while walking in the street, I became dizzy and staggered on the sidewalk. Most of the times when I entered a department store, I immediately felt as if a wet rag was placed directly on top of my brain, I got cold sweat and my body was filled with a sense of extreme stress, which grew toward a feeling of very harshly bridled panic. If someone was with me, I became remarkably silent and it was difficult for me to speak. Most of that passed as soon as I was out again in the street, and after another hour or two it was completely gone. Much later I realized that I had become sensitive toward electricity. I had sensed the amount of fluorescent light tubes inside the department store, especially in those departments where the ceiling was low and the lamps close. But I didn't realize this until the effect had appeared a few times, and I saw that this also coincided with the presence of many and strong light tubes. In the severest cases the contractions in my stomach made me fold double.

The worst thing was not knowing, not having a clue about what was going on. During the summer and fall that year I consulted lots of doctors. At the Sofiahemmet hospital they believed my affliction was panic-attacks, and they gave me a small brochure for further reading. And I did read, since I tried to keep an open mind toward any diagnosis, if only I could get some explanation to hold on to. The seizures continued, I was scared to death and thought I was dying almost every single minute during that summer and fall 1993. A tremendous pressure, which I tried to divert by working - when I had the strength, that is. Because I was also struck by a fatigue of almost cosmic dimensions.

This fatigue would come suddenly. At the dinner table I might unexpectedly get so extremely exhausted and dizzy, that I immediately had to go to bed. I could sleep the whole day. I could sleep for two days. I slept and I slept - and woke up even more tired than when I went to bed. I slept for days, with only a vague awareness of what went on around me, how the sun rose behind the shade - and how it set. I was so tired and my muscles so weak at those occasions that I couldn't even reach out and answer the phone, although it sat on the bedside table half a meter away.

I still remember, from this period, how the radio was on at my bedside, and when I floated up to a state of at least drowsiness, I often heard the great hit song of that summer, the one with the band 4 Non Blondes, where the vocalist Linda Perry sings "I cry sometimes when I'm lying in bed - I am feeling a little peculiar" and then how she screams "from the top of my lungs" - into my half conscious brain: "WHAT'S GOING ON?" For more than six months that song was my theme song. Yes, what the hell was going on?

As time passed, the more I got the feeling those psychiatric or psychosomatic explanations did not make sense at all. I scrutinized myself: did the symptoms appear when I was exposed to something unpleasant in the present, or something that could be related to something unpleasant in my childhood? Or, did they perchance appear when I felt good - according to that kind of upside down thinking that says you might be afraid of success, that well-being generates feelings of guilt? No, as a matter of fact, I could not find any connections, neither direct ones nor indirect ones. I had a permanent, persistent pain in my feet, as if I had walked ten miles in too small shoes. I had spasms and convulsions, which in the worst cases resembled epileptic seizures. These could go on for five or ten minutes, and sometimes I was shaking hard enough to fall out of my bed. When I was as most sick, it always coincided with my having a sense of acidity in my stomach and a strange production of air that made me burp for 10, 20, or even 30 minutes.

No, anxiety was hardly the cause. Certainly, I got pretty anguished as a result of all these incomprehensible symptoms, but this was hardly what caused them.

My consultations with doctors continued. One gastric specialist prescribed Losec, another one sent me to gastroscopic examination, a couple of neurologists had me go through both EEG and computer tomography (CT) scanning. A general practitioner inspected my stomach with ultrasonics and took lots of blood samples. Another doctor took other blood samples and also my EEG. Everything was alright. I was as sound as a bell. The tests proved it.

Nothing physically wrong. Which meant, I was actually going crazy. Or?

Well, it was a bit strange that this had not occurred to me before: During the years 1991-92 I had had my dental amalgam fillings removed and exchanged with composite (plastic) fillings. Could I have been injured by that? The reason for me not to think of this already when the symptoms appeared in May was probably that I had this naive notion that since the amalgams were out, they could hardly cause any harm. But what if mercury had been released during the very removal of the fillings, and this mercury had injured me? The dentist who removed my fillings used no special precautionary arrangements at all. She didn't really believe in all this talk about the harmfulness of amalgam, but she thought that if people were willing to pay her for removing the fillings, why wouldn't she do it?

The irony of it all was that I got the idea to remove my amalgams not because I had any symptoms that I could relate to mercury - I just had a vague feeling that keeping mercury in one's mouth was not such a good idea, since it was a known environmental toxin as well as a neurotoxin. So, as a prophylactic measure, to prevent future problems, I thought it would be wise to replace the amalgams with composite fillings.

Having started this line of reasoning, that my old dentist was actually guilty of malpractice, I tried to find another dentist who believed there really was a danger connected with amalgam fillings and thus applied all the necessary precautions while working with them. I found one, and like the old one, my new dentist was also a woman. During October and November she removed a few smaller amalgam fillings that (luckily) the other dentist had not bothered to drill out.

Ten years earlier, I had had a root canal filled in a molar, the "minus six", to the right in my lower jaw. My new dentist almost jumped at the sight of it. Actually, root canals could be the root of much evil, she claimed. And the gums around the root did not look very healthy, she also noted. Later I learned that filled root canals may contain all sorts of harmful materials, such as creosote, red lead, phenol, or formalin, and metals such as cadmium, mercury, silver, and copper, in compounds that might react galvanically, so that the element would precipitate in pure form into the body. Root canals may also be the hotbed for virus strains, that survive for years, maybe decades, in the dead capillaries, which, if one stretches them out, could be a mile in length. Such viruses can also spread within the cavities of the cranium, affecting the nervous system, and thus causing all sorts of troubles, neurological problems for instance.[1] I did not know all this at the time, but when my new dentist in December completely extracted the dead root, I had yet some expectations that this would have some good effect on my poor health. I agreed when my dentist suggested that I should not put in anything new, but let it be a gap where the tooth once was.

While still sitting in the dentist's chair after the root had been extracted, I felt a sort of inexplicable relief, as if my whole organism now breathed more freely. I left the dental clinic on unusually light feet and with my brain clearer than it had been for six months. I did not, however, dare to hope for too much, since I was aware of the possibility that all this maybe was a result of my expectations. The sense of relief could have been a placebo effect, but I still wish to make a note of it, since it was one of the most distinct effects I have experienced from any treatment or medication during all of the years I have been ill.[2]

I was still working very hard during this period - that is, on days I was not lying knocked-out in my bed, unable to even move. I had finally finished authoring a program with spelling exercises for school-children, "The Word Machine", which I started selling during the fall. I had also become interested in the Internet and a novelty called the World Wide Web.

In the spring 1994 I was also selling a couple of other programs of my own design, a simple hyperbook tool and a Macintosh e-book version of a Swedish humorous classic, "Falstaff fakir".

I consulted more doctors. I got the advice to take minerals and vitamins in order to help my body get rid of a possible mercury contamination, including for instance selenium, magnesium and vitamin E. This did not have any immediate noticeable effect, but maybe it was a good idea in the long run to take these supplements.

My temporary improvement after the root extraction had abated, and the brainfog settled again just as frequently as before, my feet and legs ached, fatigue struck when I least expected it and those sudden heart cramps and muscle spasms ambushed me again irregularly when I sat in my desk chair at the computer. I took hold of the arm-rests and held on until the attack was over and then I went on working. It was not unusual for me to work 15 or 17 hours each day. I had started on a huge project, translating and doing the graphic design of a manual for IDG Books about the spreadsheet program Excel 5, a handbook comprising 800 pages. Concentrating very hard on my work was a very conscious strategy to avoid complete paralysis from fear of what my body was up to.



"Low-budget hyperbook tool" and the Swedish humor classic "Falstaff fakir", published in 1994. These were the first two titles of a planned series of small programs and e-books.

Working on the book during the spring and summer 1994 was a truly surreal experience, since I had an extremely tight schedule and was supposed to deliver five translated chapters for proof-reading (of a total of 36) each fortnight and at the same time work on the graphic design. For this work I had to use two computers on my desktop, my usual Mac which I used for writing, and a PC with Windows to be able to tell what the dialogs of Excel and Windows displayed. Notable here was that I could immediately sense discomfort from the PC monitor, even if it was the only one turned on, while it took much longer time for me to react to the Mac monitor. Exposing myself to both these radiation sources at the same time was, however, not possible. I was forced to move the PC to a desk at the other end of the room, and then I wheeled myself on my desk chair to the PC each time I had to check something up - and then back.

It was odd to realize that I had become oversensitive to electricity. In the mid-80's I was working at a newspaper where a female colleague had such problems - she couldn't even type on an ordinary electric typewriter. I think we were a few who regarded her as a bit highly strung.

During the spring I also remade my program "Skriv rätt" ("Write correctly") for use within Wordfinder's shell program, and when the Excel book was finished in September, I lead a course in stylistics at the RMI-Berghs School of Communication. In retrospect I can scarcely understand how I could work that hard. As if that was not enough, I also got the idea to start a cultural magazine on the Internet and began gathering material for what was to become The Art Bin.

This tremendous working frenzy can probably be explained only by my wish to force existence into normality, at least for as long as I had not received a diagnosis. It is peculiar that knowing is of such importance. "Maybe the most awful disease is not the one that cannot be cured, but is the one that cannot be identified", wrote Jim Diets in a review of Kim Snyder's movie "I remember me".[3] At this time I had, however, started to regard myself as mercury poisoned from dental amalgams. No tests proved this yet, but it still seemed the most plausible explanation.

Although difficult times as they were, I had hardly at all been officially sick-listed until 1995. Being self-employed one may organize one's time freely and I had feverishly tried to do what I should do, even if this happened at very strange hours. In 1995 this became impossible, and I had to stay sick-listed for longer periods, and worked part-time, 50 percent at times, 25 percent at others. I devoted my working hours to web design assignments, lecturing, and the editing of The Art Bin.

I had been in contact with a doctor in Upplands Väsby for a few months. To some extent he co-operated with the so-called Amalgam unit at the Academic hospital in Uppsala. He had helped me by prescribing injections with vitamin B12. I had learned that vitamin B12 was often severely deficient in patients in my predicament. I had deliberately avoided traditional medication. There was no lack of suggestions regarding strong painkillers or drugs like prozac, which could alter the serotonin status in the brain. But I preferred to stick with the vitamins and minerals. Still, I had found that most of the supplements I had taken so far, had had effects only within the "garlic interval", as I call it: some effect is perhaps detectable, but on the other hand you don't know how you would have felt if you had not taken the substance in question. Regarding the B12 injections, I had a feeling that they actually did have a little more substantial effect than that. Primarily, my brain cleared somewhat, which is not without significance. Persistent pain is something one can get used to, if one must. But not dizziness, extreme fatigue and inability to remember and to think.

 Fact box: Natural remedies vs. conventional drugs
Due to market competition and governmental drug policies there is today in many countries a conflict between on the one hand what is called dietary supplements and natural remedies (vitamins, minerals, herbs etc.), which are mostly sold through health food shops, and on the other hand conventional drugs, sold in pharmacies.

Historically, it has been easier to achieve patent protection for conventional drugs, which are the result of long-time research and development within the pharmaceutical industry. The tendency today is that also the therapeutic method connected with a certain substance is patented. The drug industry has been severely criticized for its rigid defense of its patents, a policy which is often detrimental to sick and poor people and their possibility to get cheaper copies of, for instance, AIDS medicine.

Certain substances occurring naturally in the human body cannot be patented, and neither can herbs, which hitherto has been an explanation to why the conventional drug industry rather than selling such substances has preferred to develop similar ones. But the industry is now also exploiting the knowledge within traditional folk medicine in many countries through so-called ethnopharmacological research, in order to find interesting chemical structures to develop further. There are also attempts to manufacture genetically modified herbal remedies. Since they would be "unnatural", they would also be patentable.

Approximately 40 percent of modern drugs in use today have a natural origin, either in the sense of being pure extracts, derivatives or synthetically modeled after a naturally occurring substance. A few examples are morphine, antibiotics, tubocurarine (from curare), and acetylsalicylic acid (i.e. aspirin, from salicine). (Source: Gunnar Samuelsson, Drugs of Natural Origin: A Textbook of Pharmacognosy, 1999.)

Drug manufacturers within alternative medicine also to an increasing extent patent their special blends and multivitamin or multimineral solutions. Here, they protect either the exact proportions of a certain mixture or a special extraction process, which is considered to, for instance, preserve the active substance better than other methods.

Many countries are on the threshold of increased regulations regarding dietary supplements (through directives from the EU or the WHO), which more and more would be classified as (prescription) drugs. This would probably lessen the availability of these substances, and also make them more expensive, since they would have to pass extensive testing and approval procedures with national authorities responsible for drug control. Critics claim that this is a threat against the self-medication which many sick people depend on.

My stomach got more and more dysfunctional, and frequently I had horrible pains in the duodenum area. On December 8th, 1995 I had to go to the hospital by ambulance, for my stomach pains and cramps.

At that time I started to understand how exposed and vulnerable chronically ill people are, especially with a diffuse and disputed illness like mine. I had to lie for hours in a hospital corridor with lots of fluorescent lights which worsened my condition. The fact that I had more frequent cramps and spasms and hardly could talk was regarded merely as squeamishness or malingering. And that talk about dental amalgam was not something the doctor took any notice of. My neurological symptoms didn't seem to exist. The doctor squeezed a little on my stomach, proclaimed his diagnosis, gastric catarrh, and prescribed Zantac. I have become just as ill at several later occasions but have then abstained from going to the hospital to avoid getting worse.

I had for a while been considering the possibility of contacting the Amalgam unit in Uppsala, and after my experience at the emergency ward I decided that it was about time. I visited their provisional barracks at the Academic hospital on December 14th. They drew blood that filled twelve test tubes. It was not until February I got to know the results. Dr. Danersund wrote in his judgment that the test results indicated that "the patient at the time the tests were made had inflammatory reactions similar to those one may observe in patients wih chronic inflammation of the connective tissue". I interpreted this as fibromyalgia. Furthermore, they had executed a test called MELISA, which is a method to see if there are traces of various allergens among those white blood cells called lymphocytes, and when such traces occur the cells are called memory cells.[4] In my blood the MELISA test showed memory cells indicating exposure to several metals: inorganic mercury, methyl mercury, lead, and nickel. Else the rates were normal regarding other metals, blood fat, electrolytes etc. Dr. Danersund suggested supplementation with B12 and folic acid, which I had already started taking.

This was the first time a test had shown anything whatsoever. It was a kind of relief that my suspicions had been verified. Consequently I was not just imagining that I had fibromyalgia or had been exposed to high doses of mercury. Now there were laboratory tests indicating that it might be just so. Maybe the mercury in my body was already excreted and gone, and what was to be done now, was to try to repair the damage this metal had caused while still present in my body - damage on, for instance, the immune system or the central nervous system. On the other hand, one could not be sure that all the mercury was gone. A blood test does not tell the whole story. Mercury can still be trapped within the cells in various organs in the body, for example in the brain.

In January-February 1996 I did an allergy test of filling materials at the Bethania foundation's hospital, which was suggested to me by my new dentist. Skin tests showed a reactivity against not just mercury, but also acrylates, which is a component in plastic fillings, so-called composites. But I had replaced my amalgams with acrylates. Now, would it be necessary to remove these too - was I in for yet another change?

My new dentist started on this. Now, I would get porcelain, which at this time was still regarded as the least allergenic for sensitive persons. Indeed, it was not easy to inform oneself about the variety of materials. And - did one really dare to trust the dentists? If they had been wrong about mercury amalgams, maybe they could be wrong again. As a critical patient one was supposed to not just ascertain that the dentist used a filling material free of, for instance, formaldehyde, titanium, silver, aluminum or harmful pigments - but also make sure that the fillings were fastened with a cement one could tolerate. Because cement and isolation might contain harmful elements such as arsenic or substances that many people are allergic to, like sulfonamide or eugenol.

It had already cost me thousands of dollars to replace fillings, and now more was to come. The porcelain was not formed in the cavity of the tooth like amalgam. Instead a casting of the drilled cavity was made, and then the actual filling was fabricated at a dental laboratory - at a cost of around 250 dollars each. I had about ten of a size suitable for this type of filling - a few cavities were too small, so the composites would remain there, for the time being.

My doctor in Upplands Väsby had furthermore suggested that I had my liver's detox capacity tested, because if I was mercury poisoned and the toxin still remained in my tissues, it was of paramount importance that my body could get rid of it. In December 1996 I collected a 24 hour sample of urine, after taking caffeine and sodium bensoate. I will not account for every detail here, but the result showed certain disturbances especially in the second detox phase, where the liver produces water soluble substances from toxins, so that these can be excreted through the kidneys and the urine. If this phase is malfunctioning, a certain amount of toxins will instead be solved in fat, and stored in the nervous system and the brain. In order to support my liver function I was recommended to take glutathione, acetylcysteine, antioxidants etc.[5]

The replacement of fillings continued during 1996, and one day in the late summer of 1997 the last of my acrylates was drilled out, and this sort of porcelain, called Vita Inceram, was put in. One cannot really be certain of any filling material, but mercury amalgam is probably the worst. This definitely implies the best argument for brushing one's teeth: without cavities, there will of course be no need at all for any fillings whatsoever!

Up till now, I had written only a very brief health diary, hoping to spot some kind of pattern, but from 1997 on I started keeping a detailed record of what food I ate, which supplements I took and how I felt. At times, when I have been too ill to write, I have instead made voice annotations with the help of a dictation recorder. This small machine has been of great help also in my profession, when I have been preparing for a lecture or working on an article - without being able to sit at my desk. Sometimes my brain works fine, but my body doesn't. In such cases I can still get inspired and come up with ideas which I capture on tape, while lying in bed. Then, when it is the opposite, my body works, but not my brain, I can type out my annotations on the computer. This is comparatively a rather mechanical work, that doesn't require so much cognitive sharpness.

 From my health diary: 1997
Monday 28 July: Up at 4 p.m. Feeling fairly OK for a few hours. I eat around 8.30 p.m. and get a horrible muscle pain afterwards. (I actually exercised a little both today and yesterday - I forced myself to do it, although it hurt a lot.)

At midnight I can no longer stand it, so I take a bath. After that my B 12 injection, but I don't dare to take the whole dose, I feel somehow unstable while taking the shot. I struggle like an animal in order to write a very short article for Dagens Nyheter [Swedish daily]. I succeed at last and it is by then 4 a.m. Then, when I try to sleep, I get spasms. At first, I take half a tablet of Imovane, then another half. I don't fall asleep until 6 a.m.

Tuesday 29 July: I wake up around 3 p.m. Feeling both inert and somewhat rested at the same time, the way it usually is with Imovane. Then I eat breakfast, and immediately I become very fatigued again. Anyway I get the short article sent to Dagens Nyheter. I start to regain almost normal consciousness again around 7.30 p.m.

At this time I took huge amounts of vitamins and minerals. Many in my situation take multivitamin pills or special liquid solutions containing up to maybe a hundred different substances. But I preferred taking one substance at a time, to be able to tell which one that possibly had some effect. The maximum is around 18-20 different capsules or tablets two or three times a day. It was seldom less than five different substances. Such consumption is expensive, of course, since very little of it is prescribed by doctors and sold at regular pharmacies. The most of it is of the kind I have to buy at special health food stores, and the cost amounts to 200-300 dollars a month. The quality of these supplements differs very much from brand to brand, for instance regarding magnesium or zinc. Furthermore, one must also decide on which chemical form to use, some compound one's body absorbs well. When it comes to magnesium, for instance, one may choose between oxide, citrate, arginate, stearate etc.

The menu of supplements I have taken through the years has been a bit different from time to time, but a fairly constant basic setup has been magnesium, zinc, vitamin B 12, folic acid, and vitamin E. In addition I have frequently taken vitamin A, D, B 6, B 2, and C; manganese, molybdenum, and selenium, plus herbs such as St. John's wort, echinacea, euphorbia, artemisia annua, or olive leafs - the latter are primarily to battle infections and boosting my immune system. On top of that I have also tested other substances for a few weeks or months, for instance, L-arginine, 5-HTP, S-adenosylmethionine, lipoic acid, NADH, etc. Possibly, arginine and lipoic acid had some effect on my general condition, but as ever so often their effectiveness lies within the mentioned "garlic interval".

To an outsider it must seem quite insane to put such a lot of money into something with apparently very little effect. However, if you have such severe ailments as these described here, and you think there is even a very small chance of improvement, you will take it, believe me. If you are drowning and somebody throws you a life buoy of doubtful quality, you will of course reach for it rather than sink without trying it out.

Up to 1997 my predominant symptom was extreme fatigue, and I could sleep forever. When I didn't sleep, or almost fainted from dizziness, I was working rather hard - gently but methodically. Besides, there were still the whole spectrum of spasms, nausea and ache in my stomach, head, feet and hands. Around 1998 the symptom profile changed to some extent; now I had trouble sleeping. Sometimes I could not sleep at all for several days or nights, and then I didn't do anything but sleep for a couple of days and nights. Sometimes I could sleep almost like a normal person, for eight or nine hours, with one slight difference, however: I woke up once every five minutes, that is, about 90 times per night.

This change in my symptoms also entailed a little less of spasms and cramps, but a worsening of my muscle pain. From now on the pain in my arms, legs, hands and feet became much much worse than before. And in addition, my joints started to ache as well. I had found out a trick, however. I could alleviate the pain somewhat by wearing elastic tube bandages on my arms and legs. More and more often I slept with these on.

Gentle massage is a relief for the moment only, but as such it is still better than none at all, of course. Almost all the time my muscles have a sort of lumps lying deep in the tissue, in my calves they might be the size of grapes. When massaged, these lumps always generate a certain reaction - I must exhale. Obviously it's a necessity and the impulse is totally impossible to resist. It seems as if something is released from the muscle tissue into the blood stream, and this has to be aired out immediately through the lungs. This is at least my theory. The effect is quite fascinating, and it comes also while stretching (which, by the way, is an indispensable form av self-treatment).[6]

These tender points deep within the muscles could indicate an illness called myofascial pain syndrome. However, my pain is also located to the muscular attachments, particularly at elbows and knees, typical pain points in fibromyalgia. Too keep it simple, I now started to refer to my illness as fibromyalgia, rather than vaguely stating that I had something resembling chronic fatigue syndrome, fibromyalgia or myofascial pain syndrome.

Fibromyalgia can be induced by many causes, infections, as a complication after child birth, when the body has been subject to shock, or after a car accident for instance - or from long-term stress. Stress might in this case denote a mental strain as well as a physical burden of, for instance, toxins. I believe my fibromyalgia - or what label we put onto my pain syndrome - was induced by poisoning from dental amalgams. Maybe other toxic exposure during my youth, for instance from tobacco smoking or from work in a plastic factory with fumes of vinyl chloride, could also be parts of the causal puzzle.

 Fact box: Many names for similar diseases
Chronic fatigue syndrome, fibromyalgia, myalgic encephalomyelitis and myofascial pain syndrome are terms that to quite a large extent overlap. Among the symptoms are persisting fatigue, muscle and joint pain, as well as sore points on the body, which are either very sensitive to pressure (tender points) and/or induce pain also in other places than those touched (trigger points). Often the overall picture also includes prolonged periods with low fever, dizziness, spasms, cramps, extreme sensitivity to light, sound, fumes etc.

Some scientists believe that these syndromes are pretty much the same, but in the case of, for instance, chronic fatigue syndrome, exhaustion is emphasized, although muscle pain is usually also among the diagnostic criteria, while in the other cases focus is on the pain. (It is important to distinguish chronic fatigue syndrome from chronic fatigue - the latter is a separate symptom that might occur in connection with several diseases, such as cancer.) In order to pinpoint also the immunological problems the term chronic fatigue and immune dysfunction syndrome (CFIDS) has been introduced.

In diagnosing, it is important to rule out other diseases that may have similar symptoms, for instance Lyme disease or hypothyroidism (a condition in which the thyroid gland is underactive).

The etiology of these conditions is still unknown, but there are certain hypotheses which point at perpetual or sudden but extreme stress (such as psychological or toxicological stress), something that could affect, for instance, the immune system. Other theories deal with viral or post-viral factors as possible causes.

Some claim that these diseases have existed for a long time in history, but under other names, for instance, neurasthenia (with maybe 20 subtypes, such as tropical, female, cardiovascular, chemical, gastric, senile, or syphilitic neurasthenia), fibrositis, battle fatigue, Akureyri fever (epidemic neuromyasthenia), Royal Free Hospital Disease, post-infectious neuromyasthenia, benign myalgic encephalomyelitis, neurasthenic musculoskeletal pain syndrome, post-viral fatigue syndrome, chronic mononucleosis.

This kind of disease had epidemic outbreaks at leat at 50 occasions during the 20th century, for instance, at Los Angeles County General Hospital 1934, in Switzerland 1937 (military men at Erstfeld), in Iceland 1948-49 (Akureyri), in Washington D.C. 1953 (at a psychiatric hospital), and in London 1955 (at the Royal Free Hospital).

Some scientists believe that certain famous people in history suffered from syndromes like these, for instance Charles Darwin and Florence Nightingale, who was afflicted after she returned from the Crimea. (See Young, D.A.B., "Florence Nightingale's fever", British Medical Journal, 311, 1995; Field, E.J., "Darwin's illness", Lancet, 336, 1990.)

See also "The mysterious disease at the Royal Free Hospital 1955"

Another change occurred around 1998, when I became extremely susceptible to infections. Infections now came more often, consecutively or - as it seemed - even overlapping. I very seldom caught normal colds, while I could have a sore throat one morning, and a running nose one afternoon, the day after maybe no such symptoms at all, but a week later I had a caugh for a few days. However, I got not just this kind of infections, but strange ones, ridiculous ones. One day I woke up with one eye bunged up, and another day my lip had swollen for no imaginable reason.

Sudden changes are also typical. I could be almost dying in the morning, could hardly speak or move, or even turn around in my bed. In the afternoon the same day I might be out shopping, checking out bookstores for some special item. I could also be so extremely sensitive to light, that I had to lie in my dark bedroom, eyes closed and yet wearing sunglasses, just to protect myself from the very slight amount of light that leaked out at the sides of the roller blind and managed to penetrate my eyelids. The day after I could be out in the streets in blazing sunlight - and get along fine, even without sunglasses. It was like that with sound too. Sometimes, I could very well stand - and enjoy - loud rock music. And sometimes, I couldn't even endure the rustle from a newspaper.

”Sudden changes are also typical. I could be almost dying in the morning, could hardly speak or move, or even turn around in my bed. In the afternoon the same day I might be out shopping, checking out bookstores for some special item.”

I have heard a theory about this sensitivity in fibromyalgia patients. Our thresholds of perception and pain are so extremely lowered that during certain periods there is only need for very weak stimuli in order to induce a reaction. And this would not just affect the perception of sound and light - it would also explain why one might get post-exercise soreness as if one had run a marathon - when one has just walked around the block. Personally, I have noticed that this depends much on whether I have been able to sleep fairly well or not. If I just sleep one hour less than needed, it might result in this extreme sensitivity to light and sound.

Smells also became a problem. Formerly I liked to use aftershave, but now this was impossible. A scent of perfume out on the street, that others probably could hardly discern, would make me so ill that I immediately had to catch a taxi and go home. After that there were often many hours of horrible spasms, nausea and dizziness. I could get the same reaction from somebody walking and smoking a cigarette 20 or 30 meters ahead of me on the sidewalk. But this was also fluctuating. Certain days, if I sat in a restaurant and somebody smoked at a table next to me, I could almost enjoy the smell. The fact is, there was a time when I smoked myself and never imagined I would turn into one of those boring creatures who ask people not to smoke. Unfortunately I have to do that sometimes nowadays.

These paradoxical and sudden changes between complete exhaustion and activity, between extreme sensitivity and unaffectedness, is something that makes the disease strange - in my own view certainly, but above all probably in the eyes of other people. To me it is an enigma, surely, but foremost it is a very serious fact, whose real existence is not to be doubted. To other people it might seem as if one is just putting on a show or as if all this is a manifestation of some sort of hysteria.

In August 1997 there was a fire at a paper warehouse in Västberga just outside of Stockholm, and the heavy smoke set like fog over the whole city. I got very nauseated and dizzy from this and had to close the windows. The smoke that had already poured into my apartment was impossible to get rid of - since I could not open the windows without letting in more smoke. A real catch 22 situation. I endured hell for around 24 hours, with dizziness and heavy spasms. This experience made me realize something I had never thought about before. When you read about, for instance, forest fires going on for weeks, like a few years ago in Miami or this year in Arizona and Australia, you mostly think about immediate damages from the fire itself, but I had never before thought about how dreadful the smoke must be for sick people, for instance for asthmatics or others with some kind of hypersensitivity.

 From my health diary: 1998
Wednesday 28 January: My day/night rhythm is completely ruined. I ate late, at 10 p.m., and got headache immediately afterwards. Dizzy and a few spasms, pain in my feet. Took some A and D vitamins, since I remembered all that about the lack of sunlight. I think I haven't seen the sun for three weeks. But I watch TV with sunglasses!

Sunday 15 March: Quite a heroic evening. I sat working at the computer screen around 10-11, with both my regular glasses and my sunglasses on at the same time. I had also taken zinc drops in my eyes to be able to see (it hurt a lot), and I wrote for all I was worth to make it with the paper proposal for the conference in Copenhagen before the deadline at midnight. I had written seven pages in English by 11.58 p.m.

Maundy Thursday 9 April: Another day of fatigue. Took a bath, but had no strength to wash myself, so I just crawled out of the tub and onto the couch.

Thursday 28 May: The dizziness and the spasms seem to abate when I get migraine - does this mean I should wish for migraine? Often I have terrible headaches from around 5 p.m. until some time after midnight. The scary thing is that I sometimes forget to breathe: I exhale and get stuck in that position, and suddenly it strikes me "oh yeah, right, one has to inhale as well". This happens sometimes when I sleep also.

From now on more and more frequently I did not appear at meetings, for instance, with the advisory board at the Royal Library. I also had to cancel a few lectures - especially those requiring lengthy trips. I usually managed to go through with assignments in Stockholm or Uppsala if I mobilized all my strength - I guess few in the audience suspected that I had travelled by taxi almost from my sickbed directly to the platform, and afterwards had to immediately go home by car again.

There are two factors that have helped me to uphold my profession to some extent in spite of these circumstances:

 Firstly, the fact that I am self-employed, which means I may work when I can. If I feel fairly OK some time between four and six in the morning, I will work then. Had I had a regular employment nine to five, I would probably have been on early retirement already in 1995 or 1996.

 Secondly, my computer and my Internet connection. The computer allows me to do many things from a distance, such as delivering articles or doing research work. Instead of shopping around town for books, I have been able to order them online and have had them sent to one place only - my local post office. This has spared me lots of walking, which at times would have been unfeasible. The possibility to search through bibliographical databases and newspaper archives on the web and ordering online, for instance, photocopies of articles to be faxed direcly to my home, all this simplifies matters immensely.

The computer has also been a tremendous help in medical matters. Through mailinglists one may get in touch with others with the same illness - and sometimes even with scientists researching this field. In databases and on web pages one might find lots of information, recently published scientific articles, for instance, which one might discuss later with one's own physician. I have been lucky enough to find a couple of doctors who are open to carrying on a dialog with their patients.

In September 1998 I fixed a new appointment at the Amalgam unit in Uppsala. During that summer I had made a few excursions to natural therapists who dealt not only with vitamins and minerals (which they often are very knowledgeable about) but also practiced homeopathy, kinesiology etc. I have great difficulties to accept these latter methods, but since I consulted these therapists for their knowledge about nutrition, I decided to let them try their other skills too. The result, however, was nil. So, I felt it was time to return to science again.

New blood tests were made in October, and they were compared to those made in 1995. Now Dr. Danersund found that my reactivity to metals remained, and that it could lead to an immunological reaction on repeated exposure. Thus I should - of course - still avoid everything I am hypersensitive to. The test values, which Dr. Danersund earlier had referred to as suggesting "reactions similar to those one may observe in patients with chronic inflammation of the connective tissue", were now normal. This was surprising, since all the typical fibromyalgia symptoms - joint and muscle pain - rather had grown worse.

Blood was also sent to another laboratory, where so-called flow cytometry, hormonal status and viral serology were checked. In the judgment there was stated that I might have a "chronic reactivation of latent viruses and a hereto related immunological dysfunction." This would be consistent with several articles I have read, where scientists try to ascribe the cause of, for instance, chronic fatigue syndrome to viral diseases residing more or less latent in patients. Such pathogens are for instance the Epstein-Barr virus or the Cytomegalovirus (CMV). In my case there were indications of reactions to a certain type of Epstein-Barr. They also found an elevated prevalence of - among other types - the so-called CD8 molecule in serum, which is related to an increased activity of a certain type of white blood cells (the so-called T suppressor cells), which in turn suggests possible viral disease. The values for the male sex hormones testosterone and DHEA (dehydroepiandrosterone) in serum were low. In earlier tests DHEA had not been low, but now Dr. Danersund suggested that maybe I should supplement with it. I started taking DHEA in March, 0.5 mg a day at bedtime.

 From my health diary: 1999
Wednesday 13 January (from my dictation recorder): The night before today I was very tired already at 2 a.m. I hit the sack quickly in order to be able to catch the approaching so-called sleep-train. I slept until 6 actually, but after that I have had a hard time to go on sleeping. I ate a bit, felt very giddy and my head ached etc., took painkillers and some hard rye bread (the only thing I had at home, since I have not been able to get to the grocery store), but from that I got stomach ache and a lot of spasms. When I close my eyes I see flames behind my eyelids.

Too bad I can't sleep, because I had hoped this could be a day between my two lecturing days, when I could be free and easy and go downtown, but now I doubt I will have enough strength for that. But I must try to get out of bed till 1 o'clock and ring the Amalgam unit - as usual it is very difficult to make my waking hours compatible with other people's telephone hours.

By the way, during the last few weeks I have had difficulties in remembering people's first names. Their surnames stick better in my mind.

Now I experienced the second clearly discernible effect of a treatment during all the years of my illness. The first time was when the root harboring my root canal was extracted in its entirety. Now, in the spring of 1999, it was DHEA. One night (without DHEA) I woke up as usual every five minutes, but the next night (with DHEA) I woke up only every other hour. And this pattern continued. The overall effect on my body and soul was amazing. I got more energy and perseverance. The pain withdrew a bit into the background and I could think clearer. I was out of bed in the daytime and not only at night. Unfortunately, this effect waned away after approximately six months. I have tried a couple of times to make a pause in taking DHEA and then start again, but I have never achieved the same effect again as in the spring 1999. I still take it almost every day, since my sleep gets slightly better from it, but the other good effects are absent.[7]

One of the more striking insights I have gained through all of this juggling with different dietary supplements and experiencing how the symptom spectrum broadens and changes, is how utterly intricate those systems are that maintain the functions of the body. When one reads more in detail about, for instance, the metabolism of the cell, one is almost astounded that things don't go wrong more often than they do. Only the breakdown of glucose involves around twenty chemical reactions and as many assisting enzymes. Further support is also needed by several coenzymes and minerals. Now, if there is a disturbance, where in the process should one intervene? Should one supplement with some enzyme, coenzyme or mineral? Or could it be, that some strain of intestinal bacteria is lacking, that is needed for the substance in question to be resorbed? The complexity is so immense that one primarily realizes the need for great caution: a need to avoid the risk of upsetting these systems even more. This is why I try to limit my scope of supplements to vitamins and minerals, plus a few herbs, but in those instances I am very careful and look up possible side-effects in several books before taking anything. (Taking DHEA and an occasional pain killer or sleeping pill are the only exceptions I have made from this rule.)

At the opening of an art show a couple of years ago I ran into a cultural celebrity, who suggested that I ought to try LSD. You have to expand your mind, he said. Considering the fragility of the body's systems, it would never occur to me to try narcotics. Many of those who romanticize the use of narcotics claim that we all shall die once anyway. But the drug will perhaps not kill you, it might cripple you, mentally or physically, and then you will have to struggle with some disability for decades.

 From my health diary: 2000
Tuesday 21 March (from my dictation recorder): Not surprisingly, last night turned into hell, maybe because I dared to take a walk yesterday. [...] Plenty of spasms and that feeling in my whole body that my life itself is hanging in a thin thread of yarn that might break at any instant.

I am up now around nine in the morning and I haven't dared to eat breakfast yet, because my stomach hurts too much. I am also muzzy from the tobacco smoke that leaks in from the neighbors, so I tried to rest in the living room, but there gasoline fumes leaked in from the street instead. I want to live in the country! But then I guess I'll get hay fever instead. Maybe it's impossible to live anywhere.

It's still Tuesday, now 5.45 p.m. Extremely exhausted, stomach ache all the time, children playing and shouting in the backyard, heating pad on my belly, my arms ache as if they were to come off of their joints.

Thursday 23 March (from my dictation recorder): Still in very poor shape, sore throat. I am up now, because it hurts to much to lie down. I am sad again, the thought of going to Halmstad to deliver that lecture on the 7th seems like a rather unrealizable enterprise right now, just the thought of sitting on a train for such a long time and feeling ill, and then maybe get worse afterwards, all this for a couple of thousand crowns, it's really not worth it. My only assignment this spring, unfortunately.

Since the year 2000 my health is actually poorer still, which many of the Art Bin readers have noticed. At the beginning the magazine was published six times a year, then four times, and now unfortunately at very irregular intervals, once a year at best. Infections steal most of my time nowadays. I might be in bed three or four weeks with something resembling a cold (or maybe three or four colds in quick succession), after that a couple of weeks with (primarily) pain in my stomach, back and head, together with a general sick-feeling, including for instance head pressure or light fever. Then maybe I will be out of bed for two or three days, writing and going to the library (and, of course, if I happen to stumble into an acquaintance, he or she then says I look so healthy!) - and then the next infection strikes and I might be confined to my bed again for six weeks with, apart from all the usual symptoms, maybe a sore throat or back pains etc.

Those days when I am out in the town, with comparatively few symptoms, after having spent maybe weeks or months indoors, I always feel as if I were the comic strip hero the Phantom, dressed up as Mr. Walker: "There are times", the natives say, "when the Phantom leaves the jungle and walks the streets of the town as an ordinary man."

Living indoor life that much makes the passing of time unreal. The seasonal changes become sudden and disconnected variations. I see the window rectangle filled with yellow leaves one day, green leaves the other, all at once the trees are naked or their branches heavy with snow. It is like looking at a few isolated color slides from different times of the year, and I get no feeling of being a part of it. And one day I realize that two years have passed, while I am working on this issue of The Art Bin. It's been like two months.

It would have been nice to bring this account of my illness and its history to an end by announcing that I finally found some miraculous cure and got well - or at least considerably better. Unfortunately, this has not happened yet. I must admit that my assiduous bookkeeping of every substance I have taken and every ailment or symptom turning up, has not yielded many clues. Of course, it has been impossible for me to isolate one variable at a time in my home environment, as one can do in a laboratory. Say I was trying out arginine for a while. One day, however, when my health dived especially deep, I could not manage to stick to arginine only, but took five other supplements too. In such a case it is of course not easy to tell which substance it was that worked, if there was an improvement.

In the autumn 2001 I sat down for the first time and listed all of the symptoms I have had (and still have) over the years since 1993. I suspected the multitude would be almost tragicomical, and when I counted them, I found that the number of distinct symptoms was 48. Of course, all of them don't appear together, but when my health is really bad, I might have around 30 of them at the same time. A really good day is a day with pain in my arms and legs and hands and feet only, but this does not happen more than maybe 20 days a year.[8]

An odd little symptom, that literally has been popping up now and then during these years, is a pale pock, the size of a thumbtack head, that appears on my arm, always at times when my health is worse than bad. This pock always shows up exactly on the same spot (to the millimeter) on the inside of my left forearm. Naturally, I have no idea what this means, but just the notion that a point on my skin has such a specific connection with my current health condition makes me wonder if there could be some truth in the theory of acupuncture points after all. The pock is certainly not a problem, so it is not on my list of symptoms, but still it is an interesting phenomenon. Usually it disappears after an hour or two.

I still believe that a far more significant symptom is the already mentioned feeling of acidity in my stomach, which coincides with an abundant air production, that results in an endless burping and a cramp-like ache emanating from the orifice of the stomach and going up through the esophagus. Through the years, this symptom has always appeared when I have been at my worst in other respects. Furthermore, the last year the cramps and ache in my chest and around the larynx have grown more severe. No doctor has wanted to deal with this, maybe because they have not been able to understand the connection, but I seriously believe this could be an important clue to investigate.

Such a multitude of symptoms in one individual might give an uninitiated person the impression of a hypochondriac. But many of those I know of who are afflicted with these problems, are rather the opposite: surely they take notice of a new symptom, and certainly they suffer by it, but there is often a tendency not to mention this to their doctor, because they regard it as just another manifestation of this strange illness. Or, maybe you do mention it - and then it might be the doctor who chooses to regard it as a manifestation of the already known affliction. Still, there could be a small but very important risk concealed here: that one disregards some other serious disease that should need prompt attention.

After nine years of struggle with this persistent and nightmarish illness, at least one thing is quite clear: for me infections are the biggest problem. Pain is something one, to some extent, can learn to live with. When it goes on day in and day out, it may still withdraw into the background sometimes, when one is watching a good movie, reading an interesting book or in some other way is engaged in something. But infections strike you down immediately; all energy disappears and cramps, brainfog, sensitivity to light, back pain etc. set in. This part of the illness is impossible to combine with either work or amusements.

Infections are also the biggest problem, because I cannot get any help through the regular health care channels. What is most troublesome are the really long periods of illness, which the last few years have occurred during winter and spring. The period 1999/2000 I lived indoor life from December through March, the winter 2000/2001 from December through February. When I write this, the period of 2001/2002, I am able to stay up working a few hours now and then, and my days of confinement seem to extend well into the month of July this time.

It is hard for me to get to a local clinic or hospital ward, and should I succeed I know from earlier experience that it is most likely for me to come across a doctor who 1) would prescribe antibiotics (which would probably not help, since my infections are presumably viral), or 2) would do the usual tests which would show that I am healthy as a bell, thus implying that my problems are psychological, or 3) would regard the problem as, say, an ordinary cold, without taking into account the underlying chronic illness profile (the fact that earlier tests have shown, for instance, hyperactive lymphocytes, is at the most taken notice of, without any cause for measures, however). There are also two other risks: In an intensely electrified environment such as a clinic, I might become even more sick. I also might contract additional infections by sitting in a waiting room with other sick patients. (A waiting room at, for instance, a special clinic for infections is like a switch board for viruses. But those responsible seem to believe that if you are already ill, you can't get another illness on top of that.)[9]

Consequently, I try to get on by myself as far as possible, with self-medication and household remedies: elderberry extract, garlic, liquorice tea, ginger, aspirin,[10] olive leaves ...

I suspect there are quite a few who in this way, to the very last avoid contact with the regular health care. One can only guess what is silently happening to these people.

Being chronically ill certainly changes your whole life. If you haven't had the attitude earlier to relish the small things in life, you will get it when your health fails you long-term. One also gets an all-pervading interest, the interest in recovery. Every moment, even when one lies down and out in bed, almost unable to think, there is still a sort of brooding going on, a turning over of the problem in one's mind, incessant attempts of finding new clues, new ways to live with the illness, new ways to get rid of it: "Maybe I ought to check up my thyroid?" "Maybe qigong would alleviate the muscle pain?" "Did I ever try phosphatidylserine?" "Guess I ought to buy that book on cytokines!"

The illness is a permanent companion. This is a fact that is very hard to communicate when meeting other people, friends and acquaintances, or colleagues. Of course, they meet me on a fairly bearable day - otherwise I would not even be out of bed - so they probably don't think I look very sick. And I don't wish to talk too much about it. Still, that is what I always do. Since my illness affects everything I try to do, there is hardly any topic of conversation that excludes the experience of dealing with this very subject in a state of being ill.

Since 2000 my health is even worse than earlier. This calendar shows the first six months 2002. Days with overstrike = bedridden most part of that day and night; checkmark = strong enough to go outdoors; unmarked days = medium bad, able to get out of bed, but not to go out.

Even this case history only deals with a hundredth of what it might comprise, but this was never supposed to be a book. I could tell lots and lots about hair analyses, stool samples, theories I have picked up in books or on the Web, more medications, strange therapists I have encountered, quarrels with the social insurance office about remuneration etc. My prime purpose is not, however, to exhibit my personal life - there is already too much of that on the Internet. The idea is to use a fair amount of concreteness and detail in showing those who are not familiar with this kind of disease - both laymen and health care professionals - how it might strike and what everyday life with it is like. But it is also intended for others who are afflicted. I know myself that it is often of great value to read the accounts of others who are ill, to be able to compare predicaments and realize that others share your problems, and maybe also get a few tips about how to deal with them.

Planning something is among what is most difficult. When normal people say "I'll go see a movie on Saturday" or "on the 21st we will go to Copenhagen", to me this nowadays sounds very freewheeling and worriless indeed. Imagine, having such a control of your life that you might actually know things about the future! As for myself, I can certainly focus all my intentions on, for instance, going to the movies a Saturday together with someone, but I can never promise anything. And it takes preparation. I must decide not to eat something daring, which might suddenly make me worse, and do all I can the evening before to get a fairly good night. Just one hour less sleep than needed could produce dizziness and spasms, that would make such an undertaking impossible. There has been times when I have come as far as to take my injection of B12, sleep fairly well during the night (maybe with a little help from ear-plugs and a quarter of a sleeping pill) and then - as the finishing touch - i intend to take a bath to ease the muscle pain. A bath could tip over the whole project, however, because while the muscles get better, dizziness and spasms might get worse. It is all very unpredictable. Often, days may start rather promising, and I have figured out lots of things to do that have been postponed for months, and then a couple of minutes in the shower can be enough to make me completely exhausted, dizzy and foggy - then all I can do is take to the bed again!

Of course, one gets depressed by this. Being forced to again and again and again call things off that one has wished to do - and maybe in other people's eyes appear unreliable or lacking in interest - this is something that might discourage the most assured optimist. Depression is, however, hardly the cause of these ailments, which some misinformed doctors like to believe. Depressivity might, on the other hand, be a result.

Under these circumstances, contacting authorities or medical clinics becomes a rather complicated procedure. I usually fall asleep some time between four and seven in the morning. Then getting up for a scheduled phone appointment at eight could be absolutely impossible. Maybe I could crawl to the telephone on all fours even on a bad day, but I would probably not be able to speak. It has happened that I have struggled for two or three months to make it for somebody's telephone hour at eight, trying and trying to be in shape at such an ungodly hour. Then there is also the not insignificant problem to be able to work out what to say - when brainfog strikes, I might even forget my own phone number. It would be just my luck then, the day I finally sit at the phone with a clear mind, to find out that the person I have been trying to reach for so long now is on vacation. It would then probably take a few weeks more to get in phone shape again at the appropriate time of the day. (Sometimes, when such people use e-mail, it's a real blessing, since you can communicate with them at a time you choose yourself.)

”Most people afflicted with diseases like fibromyalgia or chronic fatigue syndrome will sooner or later be forced to decide if they can accept their disease without surrendering to it.”

Most people afflicted with diseases like fibromyalgia or chronic fatigue syndrome will sooner or later be forced to decide if they can accept their disease without surrendering to it. I guess most people try to live as before as long as possible, like I did in the beginning. If one tries that, one will get knocked down more and more frequently. Finally one might not have the strength to do anything at all. However, accepting that life cannot be lived as before does not necessarily mean that one has given up all hope of recovery, that one has been defeated by the illness. I think it is rather the opposite. You can outsmart the illness to some extent if you learn what you can do and how to do it - and then stick to doing just that and nothing more. It is easy to get excited and overdo it when fate gives you a break and lets you do things. It takes som hard self-discipline to be able to rethink one's priorities in life, in order to decide what is really important to achieve - and then have the courage to skip many of those things one has earlier considered to be imperative. (I am not so good at this myself, but I try!)

Out of five big interests, maybe you will keep and develop one or two, go for that which is most rewarding to you as a person, that which provides most nourishment, so to speak. When it comes to practical things, one has to make out similar priorities. Maybe one has to restrict oneself to do just one important thing each week. Making a certain phone call one week. Getting to a certain shop to buy air-cleaner filters the other week. Going to the library the third. Those concrete details will, of course, differ from person to person, but the principle is the same. One has to find one's own limits and possibilities, and really get to know this new person one has become. When comparing with one's old self, one must not condemn the new person as a good-for-nothing. Hopefully you might discover that you have new interesting sides and talents.

How your family reacts to your illness is very important. Unsympathetic relatives might double the burden, but if one has an understanding, supportive family, this can be an invaluable power source for the chronically fatigued, and it may also work as a floodgate against the rest of the world, thus making encounters with acquaintances and colleagues run more smoothly. At the same time one's family might need support too. Also near relatives experience a burden in their grief at how much the ill person has changed. Consuming mechanisms could easily arise, forcing the sick to console their families for their own predicament, thus getting no consolation themselves. Another pattern could be that the sick hide their symptoms in order not to worry their families too much. And then, the other family members, in their turn, will hide their anguish. Or, they might not dare to show themselves weak or ill, since an ordinary cold or aching back could never be compared with this Big Mysterious Disease. However, if you are as fortunate as to be able to talk openly about all these matters in an atmosphere of mutual understanding of both what it means to be chronically ill and what it means to be a near relative of somebody who is chronically ill, then you have an inestimable foundation for at least coping - and maybe improvement.

Many of those who call in question whether, for instance, mercury poisoning from dental amalgams or chronic fatigue syndrome are really existing ailments, often claim that all this is caused by celebrities who publicly declare themselves afflicted - then their admirers auto-suggest themselves into believing that they are ill too.

This is nonsense, of course. On the other hand, I do believe it is of importance that the public gets to know that people they respect in one way or another have diseases like these. Hopefully, this could make it a little more difficult to propagate the notion that those afflicted are all nutcases.

There are, however, also some public figures suffering from, for instance, mercury poisoning, electronsensitivity or fibromyalgia, who don't want to talk about it, since they feel this could undermine their authority. This is very understandable. I myself have for a long time been hesitating to write this article. Well-known people who haven't made a secret of their predicaments are, for instance, Mauritz Sahlin, former CEO of SKF (the ball bearing company), his wife Ulla Hilding, executive search consultant, and journalist Gunnar Lindstedt. They contribute with their stories in this issue of The Art Bin.

”In Sweden it started when singer Gunnar Wiklund and runner Christer Garpenborg in the 70's appeared in the press with their accounts of life with the mysterious disease that was then called 'oral galvanism'.”

In Sweden it started when singer Gunnar Wiklund and runner Christer Garpenborg in the 70's appeared in the press with their accounts of life with the mysterious disease that was then called "oral galvanism". Journalist Barbro Jöberger, at Swedish daily Dagens Nyheter, was stricken with mercury amalgam poisoning and wrote the book "Amalgam: hotet mot din hälsa" [Amalgam: The threat against your health] (1989).

There was a lot of talk about "yuppie flu" at this time, but more and more, as it became obvious that this disease did not hit young urban professionals only, the term chronic fatigue syndrome caught on. In 1989 the actress Bea Arthur appeared in a special double-episode of the TV series "Golden girls", where she got chronic fatigue syndrome (according to unverified sources she was afflicted also in real life). The episode was criticized for being just an episode. The week after, Arthur's character Dorothy was fit and spry again, so maybe this only confirmed some people in their prejudice that all it takes to get well from CFS is to shape up a little. However, worth remembering is when Dorothy told her doctor off in a way few of us have been able to do:

I don't know when you doctors lose your humanity, but you do. You know, if all of you, at the beginning of your careers could get very sick, and very scared for a while, you'd probably learn more than anything else. You better start listening to your patients. They need to be heard, they need care, they need compassion, they need attending to. You know, some day you're going to be on the other side of the table, and as angry as I am, and as angry I always will be, I still wish you a better doctor than you were to me.[11]

It is strange that so many doctors are surprised that patients sometimes are skeptical toward them ("when it came to polemics, they showed little sign of fatigue" - Dr Michael Fitzpatrick[12]) or that patients don't listen although "we've proven it over, and over, and over it's all in their heads" (American radio doctor Dean Edell).[13] If this kind of doctor would leave his car to a repair shop to get, say, the steering fixed and the mechanic told him that "there's nothing wrong with the car, it's probably your driving, why not take a few lessons and brush it up?" - then even the good doctor would probably get rather angry at the mechanic. "Of course I can tell myself that the steering pulls to one side, you don't have to be a mechanic to see that!" the irritated doctor says. "Now, who's the expert here, I have fixed cars for 20 years", the mechanic says. "And I have been driving cars for 20 years, so I know very well how a car should behave!" the angry doctor says. But the mechanic doesn't give up: "Have you checked your eyesight - maybe you can't even see the road!" Then the doctor goes to another repair shop.

In 1986 Swedish singer Monica Törnell took ill with chronic fatigue syndrome. It took a decade, however, before she got her diagnosis. In a newspaper interview from 1996 she tells us that she used to be able to stay out of bed about an hour - "the Cinderella syndrome", she called it, "since she had at the most one hour and a half before the spell broke".[14] In 1998 she appeared on TV in the program "Livslust" (Lust for life) and gave an account of her life with the disease. At that time she had also started singing again.

In 1992 Swedish tennis player Helena Anliot was taken ill. She was hit by an exhaustion so strong that it became impossible to even take a walk. She became "scared out of her wits when the doctors could find nothing wrong with her", she says in an interview in daily newspaper Dala-Demokraten in 1998. Her troubles were several: chronic fatigue, headache, joint and muscle pain, fungal infections, dizzy spells, double vision, heart arrhythmia, ringing in the ears, loss of hair, abscesses, reduced short-term memory, whole-body tremor after exertion etc. This is what she said in the interview about the doctors' attitude:

They thought I was a hypochondriac. I was not. I love being healthy. You can tell when doctors believe that you are mentally ill instead. Being treated like that degrades your self-confidence.[15]

Eventually Helena Anliot suspected that she was mercury poisoned and had her amalgam fillings removed. She is one of many cases that has improved. According to the article from 1998 she is completely recovered.

Many are those who have fought against their illness but finally have been forced to give up the career they are known for. Jackson Parkhurst, leader of the North Carolina Symphony Orchestra, got CFS in 1993 and tried hard to continue with his work but had to give it up in 1995. The American women's soccer player Michelle Akers retired in October 2001, after a brilliant career spanning 15 years, and she is now active in coaching young talents.

American speedskater Amy Peterson has been struggling with CFS for six years. Her darkest days were in 1996 and 1997, before she got a name for her illness, the Chicago Tribune writes.[16] Some days she can hardly get out of bed, but she is still active and carried the flag at the Winter Olympics opening ceremony in Salt Lake City in 2002.

Singer Susan Abod, who was a member of, for instance, the Chicago Women's Liberation Rock Band, and issued folk music on the famous Rounder label, got her diagnosis of CFS in the mid-80's: "When I got sick, everything just stopped", she says in the magazine Town Online. "My whole life as I knew it completely changed. I had to stop working and make healing my primary vocation."[17]

Many patients probably recognize this, how one almost gets a new profession, where the assignment is recovery. Susan Abod also made a film about her illness, "Funny You Don't Look Sick: Autobiography of an Illness", premiered in 1995. Abod is now starting to get better, after 15 years.

And then there is jazz pianist Keith Jarrett. I have been having a dialog with him for the most part of my life - at least since 1969 - as a listener, as an amateur at the piano, and now all of a sudden I find myself again having a dialog with him as a patient.

During a tour in Italy 1996 he suddenly felt completely drained of energy, and this was not just temporary exhaustion, he says in an interview in the New York Times.[18] It was rather "as if aliens had entered my body", he says. And it felt as if that maybe was the last time he would be able to play. "At the last concert, I actually played a dirge - for myself", Jarrett says.

Jarrett is renowned for his very demanding solo concerts, where he sometimes fiercely, sometimes delicately improvises from his innermost, executing a power and concentration that could suck the marrow out of anyone. In the 70's he performed up to 50 such concerts per year, lasting several hours each. The reason he managed to go through with the tour in Italy was that he rested in bed all the time he didn't perform. Jarrett believes that he took ill partly because of long-time stress, partly because of a parasite infection.

Now he went through a strict therapy with special diet and antibiotics. There were better days and worse days - a pattern everybody suffering from CFS are familiar with. In an interview in the Los Angeles Times in 1999 Jarrett comments on the very name of the disease:

The stupid thing is that the name of the disease is so lightweight. It sounds like somebody whining to their mother, "I don't want to take the garbage out." [...] But some doctors say that if you want to give the average person an idea [...] it's like the last four months of an AIDS patient's life - but forever. [19]

And in an interview in Frankfurter Allgemeine the summer 2001 he says:

When I was ill, even just turning the page of a book was infinitely hard for me. I could hardly go up the stairs anymore and walking 10 meters became a big problem.[20]

As for many of us it took some time for Jarrett to get a diagnosis: "In the beginning, I just read and read, trying to figure out what the hell it could be", he says in the Los Angeles Times interview.

Keith Jarrett's "The Melody At Night With You", which was released in 1999.

Just listening to music made him exhausted. When he finally could do this again, he noticed that his attitude toward music had changed. When Jarrett eventually started to play again at home, it sounded very different from before. In 1999 he released a few nocturnal home studio sessions titled "The Melody At Night With You", and many critics believed they could hear the illness captured in his music, and that his former virtuosity was gone.[21] But Jarrett has found something positive in that which he cannot change. He has found a new way of playing:

My fingers had to re-create a new memory. When I listen to my old recordings, I often think I don't like what I'm playing, like with the left hand. Now, I no longer have to tell my left hand, "don't do that, I don't like that." Now it plays what I want.[22]

Jarrett has also found a new way of listening, and when he plays he often feels that it could be his last time at the piano. But this is not something entirely negative, he says:

If I think, today the imaginative side is not really working but maybe tomorrow, then I'll play differently than under the premise of a last concert. But what if there is no tomorrow? You don't need to feel at all unsettled by that, there's nothing negative about it. But you play differently with this knowledge.[23]

Jarrett has been forced to learn how to play again, he must probe every note. It seems logical that he originally intended to give the record from 1998 the title "Touch".[24] First he plays one note, then he plays another one. I recognize this very well myself, from music, from writing - and from life in general. I used to think like that when I played, long before I got sick. I have been thinking like that when I have been experimenting with poetry. First I write one word. Then I write another one. The tension that is generated between them is what interests me. That tension might give birth to a third word - or a third note. Maybe it will. Maybe not. This kind of tuning in with the present gets a new meaning when one is ill.

Keith Jarrett is back now, playing with his trio now and then, but circumstances are quite new. The story of his illness illustrates how important it is to determine one's priorities and learn to live in a different way; not to surrender, yet accept the new situation and its possibilities.

(This article has a sequel, "Consensus and Canaries: About Medical Science and its Loyalties".)


1. See George E. Meinig, Root Canal Cover-up, 1996, where the author accounts for the root canal research made by Weston Price. [Back]

2. Usually, I regard 1993 as the year I took ill. But, as a matter of fact, a few symptoms had appeared earlier. The very first attacks of dizziness and cramps in my stomach came during a stay in Italy in August 1991. And in 1998 when I read through some old diary pages from the 80's, I found - to my big surprise - that I had consulted a doctor for heart arrhythmia and other problems just two months after my root canal was filled in 1983 (the root that is now completely removed). And three years later I wrote this in my diary, on April 20, 1986: "Back pain and aching arms, as usual." November 17, 1986: "The last two nights, I have had terrible pains in my back, my neck and in a tooth that has a filled root canal, also headache and a sore eye - it's as if my whole right side is aching, and I get unpleasant phantasies about paralysis and such things." November 24, 1986: "My toothache finally got unbearable. Last Thursday I got an emergency appointment with the dentist in Kristineberg, and he didn't seeem to understand what was the matter, but his guess was infection (no abscess though), so he prescribed penicillin, which I have taken now for a couple of days. It was effective. The sores in my gum had almost totally disappeared by Friday evening." January 4, 1987: "I write this, with a feeling of fog in my head and with my foot in a bucket of piping hot water. During the night I got a strange ailment; my whole right leg is aching, especially my heel and the hollow of the knee, a disgusting feeling, as if I was rotting from within. A somewhat drastic metaphor, but that is how it feels." February 3, 1987: "Today is the first day I have had strength enough to stay up. After the fever went down a few days ago, I got the gripes instead and also nausea ... could it be gastric catarrh? Besides, I have been completely fatigued, if I have been up washing the dishes, for instance, I must immediately go to bed and sleep for a couple of hours." December 7, 1987: "I woke up with horrible muscle pains everywhere in the upper part of my body." I remember that I back then regarded all this as strange but isolated occurrences, possibly psychosomatic. During a period I even considered psychoanalysis. When looking at this in retrospect, in the light of what happened later on, these symptoms seem to fit into another pattern. [Back]

3. Maryland Film Festival homepage, 2 May 2001. The film is about chronic fatigue syndrome. Soccer player Michelle Akers and movie director Blake Edwards, who are both afflicted, tell their stories in the film. [Back]

4. This test has since then become more or less banned by the Swedish National Board of Health and Welfare - they advise against it - which is remarkable since the authority at the same time in a report stated that skin tests are insufficient in order to assertain oversensitivity toward, for instance, mercury. The MELISA test allows for isolation of vital immune functions in a standardized laboratory environment, where it is possible to study various reactions in detail. This ought to be a valuable complement to skin testing. [Back]

5. Glutathione is a compund containing sulphur (a so-called tripeptide), which is an antioxidant protecting the body from free radicals. The substance is also an indespensible part of the body's detox process, for instance, when it comes to transferring fat soluble toxins into water soluble toxins, which can be excreted through urine. Acetylcysteine has for a long time been used to dissolve mucus, in connection with cough for example, but it is also involved in the detox process, it helps and protects the liver and also enhances the production of glutathione. [Back]

6. In this context one might wonder how well the chemo-receptors in the blood work. It is a remarkable fact that I almost never yawn nowadays, not even when I see others do it, which is otherwise a rather common phenomenon. Maybe there is some malfunctioning with my chemo-receptors, which normally inform the brain about the blood content of oxygen. In a similar way, the system that warns about dehydration seems partly out of order. I seldom get a normal sense of thirst, and I never sweat from exertion, while I do sweat enormously when influenced by electromagnetic fields, without having to move at all. I might sense a dryness in my mouth and realize I must drink, but I never experience that special pleasure which is normal when slaking one's thirst. [Back]

7. There is a third good, but rather peculiar, effect that may be reported. I have often felt a substantial improvement in my general health condition for a few days after more extensive blood tests, when they have drawn more than three test tubes of blood. Maybe this forces the system to renew the blood? [Back]

8. This is the list of symptoms: Pain in muscles and soft tissues of the arms, legs, hands and feet; joint pain; a weakness in the muscles around the waist (difficulty standing upright); a weakness in the muscles around the knees (difficulty to stand and walk); jaw muscle pain; jaw and tooth ache; pain in the muscles of the eye; ordinary headache; migraine; dizziness; "dizzy legs", i.e. a local feeling of lack of stability and control; "brainfog"; a feeling "as if a wet scouring cloth is placed on top of the brain"; extreme sensitivity to light; extreme sensitivity to sound; extreme sensitivity to odours (e.g. tobacco smoke or perfume); extreme sensitivity to touch; extreme sensitivity to heat (a normally tempered bath is perceived as scolding); hypersensitivity to wetness on the skin; hypersensitivity to, for instance, punctures with a hypodermic needle; creeping sensations in the body; twitches (primarily in the legs and the nape of the neck); overgrowth of candida albicans or fungal infections; contractions of the diaphragm; a feeling of acidity and production of air in the stomach; pain in the upper part of the stomach; pain in the abdominal ventricle; pain in the guts; prostate pain; breathing difficulties; no breathing difficulties but instead a rustling sound in the lungs when inhaling; difficulty to speak; temporary amnesia; temporary slight dyslexia; heavy sweating and sensations of fever (mostly not high fever, sometimes around 37,4° C (99.3 °F) - my normal temperature is around 36,6-36,8 °C (97.9- 98.2 °F); sore throat for a short time (e.g. during half a day); running nose for a short time (e.g. during half a day); caugh for a short time (e.g. during half a day); back pain; knee pain with a twinging sensation; various local infections, e.g. in an eye, a lip etc.; extremely tender and partly numb toes; the balls of the feet extremely tender (difficulty to walk - especially directly after sleep); dry mouth; severe chronic fatigue; a more temporary (up to 24 hours) extreme fatigue (impossible to move the arm even an inch); extreme fatigue - combined with difficulty to sleep; extreme fatigue - combined with extremely long periods of sleep, up to 20 hours; disturbed sleep during periods of (to me) more normal fatigue (then I sleep in intervals down to five minutes at a time, thus waking up around 90 times per night).

In all this is 48 symptoms, but all of them do not appear simultaneously. When I am at my worst I might have 30 of them. I never have zero symptoms, but a good day might pass with only the first item on the list, pain in muscles and soft tissues of the arms, legs, hands and feet. This happens maybe 20 times per year. On a fairly good day, when I can work almost like when I was healthy, the symptoms are usually five at the most, and then none of the most severe ones or any of those that affect my cognition, like "brainfog". Such "fairly good" days also occur maybe 20 times a year. The rest of the time I have either many of the lighter symptoms, or a few of the more severe ones. The bottom line is, however, that I cannot work (or do anything else) more than maybe a couple of hours a week under these circumstances.[Back]

9. In March 2001 the BBC reported about a survey of ME patients in the UK, carried out by "Action for ME", where 2,338 persons responded to questions about their illness and health care. A third of them said they had had to wait at least 18 months for a diagnosis. 52 percent claimed that an earlier diagnosis would help. 70 percent are sometimes or always unable to get to a doctor's clinic, and 80 percent of those who are bedridden have been refused a house-call by a doctor. See "ME patients 'neglected and suicidal'", BBC News/Health, 21 March, 2001.[Back]

10. Aspirin contains acetylsalicylic acid, which seems to be an underrated remedy in some application areas. For me, it usually does not kill pain, but it might remove a certain kind of brainfog, it clears my head. It might also relieve me of what I call a general sensation of infection, or decrease inflammation. This is a drug that has been used for more than 2,000 years, at least if one includes its crudest form, salicine. But more uses for it are still being found, and the nature of its influence on the human body is not fully understood. The painkilling and antipyretic effects are due to the capacity of acetylsalicylic acid to inhibit the production of the hormonelike substances called prostaglandins. [Back]

11. Doug Shore, "M.E. & FM Manual", 1997. [Back]

12. Fitzpatrick M, "ME: the making of a new disease", Spiked Central 17 January 2002. Fitzpatrick would probably regard my two articles in this issue of The Art Bin as yet another example of how indefatigable we CFS sufferers are when it comes to arguing. However, these articles took me two years to write. Had I been healthy, it would have taken three or four months. [Tillbaka]

13. "Dr. Dean Edell - is fibromyalgia a pain messenger problem?", originally broadcast on March 8, 2001. [Back]

14. Ulrika Häggroth, "Monica Törnell var svårt sjuk i tio år. Nu hoppas hon på en ny karriär", Expressen, 24 September 1996. [Back]

15. "Amalgamsanering gjorde Helena frisk", Dala-Demokraten, 5 January 1998. [Back]

16. "For Peterson, competing is the easy part", Chicago Tribune, 14 December 2001. [Back]

17. Matthew S. Robinson, "Living Moment to 'Moment'", TAB, 17 May 2001. [Back]

18. "Still battling an illness: Jarrett ends his silence", The New York Times, 8 November 1998. [Back]

19. "A ferocious spirit, untamed", The Los Angeles Times, 23 February 1999. [Back]

20. "The Uniqueness and Secrets Behind the Tokyo Tapes", Frankfurter Allgemeine Zeitung, 31 July 2001. [Back]

21. Rubien, D, "Keith Jarrett: A giant of jazz innovation finds himself reaching new heights by deftly interpreting classic tunes", Salon, 4 December 2000. [Back]

22. Ibid. [Back]

23. Ibid. [Back]

24. "Die Legende vom Wassertrinker", Tagesspiegel Online, 30 July 2001. [Back]

Copyright © Karl-Erik Tallmo, 2003.

About the author

Links to sections:
All issues | Articles and essays | Origo | The Gallery | Contributors
[English Homepage] | [Svensk bassida]