August 9, 2013
By Erik Johnson and Lisa Petrison
About 150 years ago, the theory and the practice of medicine went through a dramatic change.
Although scattered scientists had speculated for centuries that microorganisms were capable of causing disease, it wasn’t until the late 1800’s that this became accepted as a mainstream theory.
Following the work of Ignaz Semmelweis (a physician who advocated the routine washing of hands by doctors, nurses and midwives to prevent childbed fever) and John Snow (an epidemiologist who correctly attributed a cholera outbreak to drinking water contamination), Louis Pasteur’s research in the 1870’s demonstrated that germs were responsible for many deadly diseases and that vaccines and sanitation techniques could be effective means of addressing them.
This discovery revolutionized the field of medicine, through the process of what philosopher Thomas Kuhn would later describe as a “paradigm shift.” Within a couple of decades, the previous paradigm of medicine (centering on the idea that diseases were caused by bad air and could be treated through the removal of imbalanced humors from the body with leeches) had been entirely replaced.
The focusing of the medical community’s attention on microorganisms was spectacularly successful at improving public health.
The adoption of a multi-pronged approach designed specifically to address microorganism spread (e.g. public water treatment, sewage containment and treatment, pasteurization of milk and wine, widespread vaccinations, antibiotics, attention to hygiene) led to the near disappearance of one of the biggest fears that people previously had: that they or their loved ones would suddenly take ill and die.
For instance, prior to 1900 infant mortality rates were 200-300 per 1000 live births; by 2011, the rates in the U.S., Europe, Japan and other developed countries were less than 6. (1)
The Post-Pathogen Era
As a result of the control of pathogens, the landscape of medicine changed drastically. By far the leading causes of death in developed countries today are heart attacks and cancer (2) — and if pathogens are responsible for causing these, medical science has been unable to find them. (Specific infections have been found to be risk factors for certain kinds of cancer, such as of the liver, but do not conform to Koch’s postulates in a way that would distinguish them as causal.)
Another noteworthy characteristic of the current situation is the widespread prevalence of chronic neurological illness (such as Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Fibromyalgia, Multiple Chemical Sensitivity (MCS), Alzheimer’s, Parkinson’s, Autism, ALS, ADHD, MS and a whole raft of other “autoimmune” diseases) resulting in substantial long-term disability and suffering, if not immediate death. Mental illness also is common, with 50% of the population having a diagnosable disorder in their lifetimes. (3)
And while many of these diseases have been found to have pathogens of various sorts associated with them, none has of yet been found to have a causal pathogen that is present in every incident of the disease and or that seems to be conventionally transmitted.
Looking for a Cause
And there we have been for the past forty years or so, stymied.
Since these diseases do not seem to be caused by pathogens, conventional medicine’s main strategy has been to attempt to bring the symptoms under control by developing pharmaceuticals to tweak the body’s systems. The concept that we should try to find the causes of the diseases — or that we might be able to figure out how to prevent or cure them — is surprisingly rarely discussed.
Considering the recent track record of medical science with regard to successfully addressing diseases that are caused by pathogens, it is no wonder that many CFS patients hoped fervently that their disease would be found to be caused by a pathogen too. However, after 30 years of intense searching for a causal infection, at present we seem no closer to finding one than we were when the illness first emerged.
Thus, if we want to figure out the cause of CFS, considering other possibilities beyond pathogens seems prudent. Of the diseases for which the cause is understood, causes fit broadly into the following five categories:
* Nutritional Deficiencies
Of the factors on this list, genetics likely have received far more attention with regard to CFS than any of the others except for pathogens.
However, few diseases that create severe symptoms in young people (as CFS can) are attributed primarily to genetic factors, since genetics that are that problematic generally fail to be passed on through the process of natural selection. Inherited genetic diseases such as hemophilia and phenylketonuria do exist, but they tend to be very rare and to be relatively stable in prevalence rather than emerging dramatically during a single generation.
Thus, the epidemiology of CFS (a disease that has become a major problem only since the early 1980s and now affects many millions of people worldwide) does not seem consistent with having a primary cause of genetic abnormalities.
Rather than being solely responsible for disease, what genetic inheritance much more frequently does is make certain people especially susceptible to other core factors causing disease or (with regard to epigenetics) to pass down the negative results of having being affected by those factors to their offspring.
Thus, if the goal is to understand the causation with the ultimate aim of preventing or curing the disease, then we ought to be attempting to understand the role that the other factors may play in causing the disease in predisposed people (rather than just saying “Genetics is the cause”).
For CFS, the genes that have been most frequently proposed to possibly be playing a role are those that may be associated with detoxification ability, including HLA-DR (suggested by Ritchie Shoemaker as being related to biotoxins) and mutations that seem associated with methylation.
Insofar as people are not being challenged with toxins, having “problem” genes related to detoxification will not result in illness. Increases in toxic exposures can make these genes seem a much more relevant factor.
Another type of genetic abnormality happens as the result of apparently spontaneous chromosomal damage during the reproduction process, as occurs in Down Syndrome. We don’t have any knowledge that this is a factor in CFS, though we’re certainly open to arguments that it might be.
Injuries have been fairly frequently suggested as a possible cause of CFS.
Occasionally this has meant head or back injuries; more often (as with the CDC’s studies designating child abuse as a risk factor for the disease) it has meant psychological injury.
In addition, some CFS doctors have put forth the notion that any of a whole variety of injuries (whether it be viruses or bacteria or nutritional deficiencies or physical trauma or overwork) can knock genetically predisposed people down into permanent illness with CFS. (4)
The idea that vast numbers of people would be so fragile that a wide variety of historically commonplace stressors would lead to permanent disability is inconsistent with the fact that CFS is a disease that has emerged as a problem only since the 1970’s (and also inconsistent with the theory of evolution).
Since back injuries and child abuse and overwork and random pathogens have been around since the beginnings of time, crediting them for being responsible for a disease that is either new or rapidly increasing in prevalence does not make a lot of sense. Injuries and overwork more seem trigger factors in people whose core health already has been compromised by some deeper disease cause.
Certainly we want to include such triggers in our understanding of the disease, but looking harder for factors that have changed over the past 50 years seems even more essential.
The idea that nutritional deficiencies could cause CFS fits somewhat better with the apparent epidemiology of the disease.
Increasingly, critics have suggested that human beings seem to be able to thrive on almost any diet — other than the one comprised of a high percentage of processed foods that most people in industrialized nations have been eating since the 1970’s. (5) Since CFS seems to have become a problem mostly since the 1970’s and to be especially common in civilized countries relying largely on processed foods (for instance, U.S. and England), considering the idea that nutritional deficiencies could be causal seems possibly worthwhile.
Of course, given that many people subsist (and even work intensely) on sub-optimal diets worldwide without developing CFS, poor nutrition would seem to require interactions with genetics or other factors even if it is involved in the disease.
If nutritional deficiencies were a causal factor in CFS, then we might expect that correcting nutritional deficiencies might be helpful to patients.
However, no diet or nutritional supplement (except possibly avoidance of trigger foods) has thus far been found to be very helpful to more than a small percentage of patients.
In addition, anecdotally some people who have come down with CFS report that their previous diets included very little processed or packaged goods foods, again arguing against the idea that the “modern diet” is a universal cause.
Thus far, perhaps the most promising candidate for a nutritional deficiency in CFS is folate, a B vitamin that is naturally present in whole grains and produce. Folic acid is supplemented back into processed grain products, but some researchers (including the late Rich van Konynenburg) have suggested that some people have a difficult time converting folic acid into the more active forms of folate obtainable through foods.
Other nutritional deficiencies that have been proposed as possibly relevant to CFS include the active forms of other B vitamins; various minerals that are now less present in foods due to processing or soil depletion; Omega-3 Essential Fatty Acids (overshadowed by the processed vegetable oils that dominate industrial diets); and probiotics such as those present in yogurt or other fermented foods.
While supplementing these appears to be helpful for some individuals, the effects tend to be modest at best and inconsistent across patients.
The last category of disease causation — toxins — has been almost wholly unexplored in CFS.
Although a few peer-reviewed articles have proposed that toxins might be playing a role in the disease and a few popular books have suggested a “canary in the coal mine” etiology, there has been virtually no public consideration of the concept that toxins might be a causal factor by any CFS researchers and virtually no research work attempting to examine whether toxins might be playing a role in causing the disease. (6)
From a common-sense point of view, the idea that toxins might be a causal factor in any disease that has emerged in developed countries during the last fifty years is one that should not be reflexively dismissed.
People today are exposed to vastly larger amounts of toxic chemicals and metals now than ever in history — in the outdoor air, in the indoor air, in water, in food, in household products, in toiletries, in dental fillings, in vaccines, in medications, in textiles, in furnishings, in dust, in soil.
Insofar as we are looking for a factor that has changed dramatically in recent decades, toxic exposures should be at the top of the list.
For the most part, these toxins are both untested and unregulated. Most of the chemicals that we encounter have never been subject to any scrutiny at all, other than what the companies marketing them have given them. (7)
Even strong evidence that specific pesticides are responsible for killing the bees that pollinate our crops is not enough to get them withdrawn from the market. (8)
Children are required to get 24 vaccines before the age of two, each of them loaded with heavy metals. (9)
Despite widespread consensus that fire retardants in furniture cause illness, persist in the environment and fail to prevent fires, consumers still do not have any legal ability to purchase sofas that don’t have cushions saturated with pounds of the stuff. (10)
Chemicals of all sorts are flushed down toilets without regulation, and the resulting toxin-laden sewage is (after treatment to kill the pathogens) spread on fields as fertilizer. (11)
In short, we live in a world that acts as if it doesn’t believe that toxins are capable of causing disease.
And while part of the reason for this is because of the influence of highly profitable chemical companies on lawmakers, a deeper problem is that medical science has yet to seriously consider the effects that toxins of any type might be having on human beings.
With very few exceptions, these scientists’ training and interest lies in the realm of pathogens — meaning that no matter how intelligent they are or how good their intentions, any illness that is caused by anything other than a pathogen is likely to up as “mystery disease” in their minds.
A Playable Game
According to Thomas Kuhn’s classic 1962 book summarizing the social history of science, The Structure of Scientific Revolutions, the tendency of established doctors and scientists to fail to consider any causal models other than the one that involves a core pathogen is exactly what we should expect. (12)
According to Kuhn, established scientists are virtually never the people to turn away from the existing paradigm. Instead, it is often newcomers to a field who institute paradigm change:
Almost always the men who achieve these fundamental inventions of a new paradigm have been either very young or very new to the field whose paradigm they change. And perhaps that point need not have been made explicit, for obviously these are the men who, being little committed by prior practice to the traditional rules of normal science, are particularly likely to see that those rules no longer define a playable game and to conceive another set that can replace them.
Furthermore, Kuhn says, paradigm shifts generally occur only when the stakes are viewed as very high and when the established paradigm starts to seem to have little promise of resolving the problem:
Crisis simultaneously loosens the stereotypes and provides the incremental data necessary for a fundamental paradigm shift. Sometimes the new paradigm is foreshadowed in the structure that extraordinary research has given to the anomaly…. More often no such structure is consciously seen in advance. Instead, the new paradigm, or a sufficient hint to permit later articulation, emerges all at once, sometimes in the middle of the night, in the mind of a man deeply emerged in crisis.
I guess that I went beyond scared.
I remember once losing control of an airplane at 800 feet. I was so certain that I wasn’t going to survive that I simply stopped caring about whether I did or not and put my total focus into action – and it worked.
And when in 1998, I reached a point in this illness where I felt that there was no chance for survival, I made one last attempt at a promising concept – and it worked.
It worked so well that I went from having been accepted into the most aggressive experimental antiviral program of a novel immune modulator Ampligen for severe ME/CFS (and not being able to afford it) back to mountain climbing within six months.
That’s what it took for me! Thinking that I was going to die.
I can’t tell you how difficult it was. It was a totally wild leap at this weird concept.
I saw a desperate chance to escape my condition of lying around in suicidal agony, and went for it with everything I had.
I can understand why people would refuse to wrap their heads around this factor, because I could scarcely believe it myself.
Turning Down Immune Function
You had to be there. And even then, it was still almost impossible to believe.
There are zones in which people donʼt do very well.
These zones leave a lingering effect, as if immune function has been turned down.
There is most often no odor, no sign, and nothing except your own reaction to use as a guide.
And the immediate reactions are subtle – a vague sense of cardio-distress, hypoperfusion, depression, a few others.
During the Incline epidemic, people spending time in these zones fared the worst.
Just driving through town, through a plume, could put enough of this stuff on my possessions to keep me vaguely ill for days or weeks.
The only real way to get a clue that these zones were there was by the strange way that people’s immune surveillance seemed to diminish.
And the only confirmation was by what happened when people who were steadily declining made it out of these zones to a better place.
We got better.
When I started though, I had to look backwards over month long periods and try to compare to see if I was really getting better or just imagining it.
And then, after maybe four months, something shifted and my improvement just took off.
Many people with this illness have by now noticed this effect and taken advantage of it. It is a paradigm that defies explanation by conventional testing and does not seem to have indicators of classical toxicity.
The effect is still there, but science hasn’t caught up to reality.
Collecting Rejection Slips
I was so concerned about the emergence of this specific phenomenon that I went to famous CFS doctors and paid them to listen to my story.
In fact, the instant that I agreed to become a prototype for this illness in 1986, my mind was thinking, “Now they’ll have to look into this! They cannot very well have a prototype for a syndrome running around with an unexplained complaint like this.”
That’s when I started collecting rejection slips. Almost thirty years’ worth of them.
I lost count after about three hundred.
Just for the heck of it, and just so that I could say I had, I even contacted Simon Wessely and Peter D. White. They weren’t interested either.
As part of my military biowarfare training, it was stressed that although it is certainly good to know the chemical properties of the agent in question, this knowledge is unnecessary for the protocols and strategies involved in dealing with it to be effective.
The army told us that only thing a soldier really needs to know to survive is how to detect, evacuate, avoid and decontaminate in response to these threats. (Or you’re DEAD, they said.)
I noticed that where clusters of CFS had occurred, there was a slight palpable sensation that seemed to be having a deleterious effect on me and on others. I conducted an experiment of treating these vague sensations using the biowarfare survival protocols that I had been taught, and obtained results beyond anything I dared hope for — first for myself and then for a bunch of other people with this illness too.
Unfortunately I don’t have a chemistry lab in my back pocket, and so I explained to all those doctors and researchers I contacted that all I could do was point at the thing that was making us all ill.
“There it is. You’d better find out what it is, because there will be millions of people like me. There will be carnage.”
The answer that I consistently received was that there was no need to investigate, because no matter how many cases I presented, they all were “anecdotal.”
It seems that there is a virtual brick wall of medical denial created by a fundamental philosophy: “If we don’t already know it, then it cannot be worth investigating. If other physicians and researchers don’t already think so, then there is no evidence supporting your claim. Therefore you cannot prove it.”
What I finally realized is that doctors cannot help but treat what they know as fairly definitive. The information that they were taught is supposed to have been the state of the science (even though what I learned in my army training seems not to have been shared with civilian physicians).
This means that they have greater knowledge than most folks about most things, but that they also have more fixed ideas about what can and cannot happen in the world. Anything that challenges their paradigm is therefore suspect.
Novel theories which propose to explain unfamiliar phenomena automatically sound ridiculous to them. That means that it’s very difficult to get them to look into observations that don’t fit their pre-existing hypotheses, no matter how strong or robust the effects may be.
Most researchers have a tendency to confirm their hypotheses by simply ruling out anything that doesn’t fit as meaningless or a separate phenomenon. In this case, it has led to the bizarre situation of the very people who were used as prototypes for ME and CFS being discounted or dismissed if their experiences do not fit the proposed hypothesis of the particular researcher.
People steadfastly cannot believe that my degree of improvement is due to this effect, no matter how many other people replicate my experience, and so I have no effective means to communicate it to them.
Denial is as simple as, “I don’t think so.” (Or slightly more politely, “Those are some amazing stories, Erik — and now I have to get back to my real work.”)
Interceding in the Effect
In a weird kind of way, the disinterest has been more phenomenal than the phenomenon itself.
There seemed nothing I could do to convey to these people that they were being presented with an observational opportunity — just as if a midwife had approached Semmelweis about how well hand washing worked, or if a London cholera victim had asked John Snow why all the cholera sufferers he knew obtained their water from the same well.
It seems to be a peculiarity of human epistemology that a cause often has to be conceived before a strategy based purely on effect is put into action.
The Semmelweis situation of the 1840’s illustrates this clearly.
Before people had the concept of bacteria established in their minds, all they could do is try out the hand washing to see how many women didn’t die of childbed fever.
No one had to know why hand washing worked to get benefit from it.
However, they would have had to have trusted Semmelweis enough to be willing to try it out, to see if their results were as good as his. At that point, they might have started to ask the simple question of, “What exactly is this cadaverous material that we are carrying on our hands, that it makes such a difference when it is washed off?”
Unfortunately even after Dr. Semmelweis demonstrated the clear effects of medical prophylaxis, his hand washing program was still rejected by the medical profession since the direct relationship of bacterial infection to childbed fever had not yet been established. Since people had no rationalization for why Semmelweis was so insistent that decontamination was important, they wouldn’t do it.
Or put yourself in Dr. John Snow’s place.
During the Great London Cholera epidemic of 1854, the mainstream didn’t know about germs. Oh, they had their suspicions, but it wasn’t “proven.”
But John Snow could see the effect. People who clustered around a certain public water source were dropping like flies.
He didn’t need to nail down the precise etiology to make that connection. He didn’t have to prove anything to take advantage of the phenomenon which he could clearly observe.
By acting in accordance with the reality that sick people obtained water from that well, and persuading the city officials to put a lock on the pump handle, he interceded in the effect and stopped the chain of cholera transmission.
A Simple Observation
Snow and Semmelweis were not validated until many years later, after science caught up with what were, after all, some very simple observations.
And all that I have done, at the essence of things, is to make a very simple observation.
Leveraging this observation into a strategy to feel well, on the other hand, has been a hell of a life. I’ve been living this way for more than a quarter century, and I don’t see how most people ever will be capable of doing it.
That’s why I wasn’t really thinking of offering this as a therapy, except to those people who desperately want to stay alive and are willing to undergo the same level of deprivation that I have.
My goal was to get a good researcher to pay attention to this phenomenon and look into it, in the hope of figuring it out and eventually using that knowledge to develop more practical ways to help others.
I don’t claim to have a cure or even a viable treatment that can be applied to all cases of CFS.
What I have is one hell of a clue.
We need to recognize the need to look at this clue with different tools, such as the recent technology in mass spectrometry that only has become available in the past few years.
And yet even after 30 years of people researching CFS in all different other ways and getting absolutely nowhere, it appears that “You can’t prove it” and “I don’t think so” are not one bit less powerful now than they were back at the beginning of this illness.
As I said a long time ago, “What does one do, when words do not suffice?”
I don’t care what this is. I just know it is happening.
A New Paradigm
Arguably, the study of Chronic Fatigue Syndrome is in crisis.
Despite three decades of study and research (including nearly 500 peer-reviewed studies detailing medical abnormalities), no cause has been identified and the most talked-about treatments are prohibitively expensive, quite toxic and mildly effective at best. (13)
If Kuhn is correct, the established doctors and researchers who have dedicated their whole lives to solving this disease are not going to be the ones to initiate a move toward any sort of new era of medicine.
According to Kuhn, if such a change is to come about, it will do so by incrementally increasing support for a new paradigm as evidence and arguments accumulate:
Probably the single most prevalent claim advanced by the proponents of a new paradigm is that they can solve the problems that have led the old one to a crisis…. At the start a new candidate for paradigm may have few supporters, and on occasions the supporters’ motives may be suspect. Nevertheless, if they are competent, they will improve it, explore its possibilities, and show what it would be like to belong to the community guided by it. And as that goes on, if the paradigm is one destined to win its fight, the number and strength of the persuasive arguments in its favor will increase. More scientists will then be converted, and the exploration of the new paradigm will go on.
It is the purpose of this blog to discuss in as rigorous a way as possible the idea that environmental toxins may be responsible for the illness that the CDC has chosen to call Chronic Fatigue Syndrome, and to make the case that this new paradigm is capable of solving the problem of this disease.
The goal thus is to present the evidence for and against the appropriateness of this theory; to improve upon the theory through thought and discussion; to explore the theory’s possibilities; and to show what it would be like to belong to a community guided by this theory.
Perhaps if we do this well — and of course assuming that the theory actually has merit — paradigm change will come more quickly than one might think.
It is our hope that whatever their current thoughts on this topic, members of the community of people who care about this disease (including doctors, researchers, patients, advocates and other interested parties) will contribute their thoughts to the discussion section of this blog and share the posts with others.
Thanks in advance to all for your participation here.
To go to the Paradigm Change website, please click here:
A new book detailing Erik’s experiences is available here: