Physicians wrong two dozen times when
believing diseases were psychological
We present twenty-three diseases physicians used to write off as psychological and discuss the relation to chemical and electrical sensitivities that are still controversial.
Keywords: diseases falsely thought psychosomatic, chemical sensitivity, MCS, electrical sensitivity, psychosomatic, psychiatric, controversy, resistance, history
Multiple chemical sensitivity (MCS) and electrical sensitivity (EHS) are two modern diseases that are still poorly understood. They also have features that challenge current thinking in the medical world. This leads many physicians to believe these illnesses are just in the minds of the patients. That is unfortunately how they’ve labeled many people in the past as well, and still do, despite being proven wrong so often.
In his book Explaining “unexplained illnesses,” professor Martin L. Pall lists (pp. 203-206) several illnesses that were once controversial and where physicians often wrote the patients off as having “hysteria” or “repressed emotions” or similar vague psychological explanations. The illnesses listed by Dr. Pall are:
peptic (gastric) ulcers
These are now accepted as “real” illnesses, though some are still not fully understood. Pall provides several quotations from medical journals, including the following:
The neurological literature abounds with references to the association of multiple sclerosis and hysteria.
Most of those with peptic ulceration will balk at the mention of possible psychiatric referral for consultation or treatment.
The central conflict in bronchial asthma is said to lie in the relationship with the mother . . .
. . . when patients began to express emotions which were formerly repressed, the asthma improved.
Parkinsonism . . . is a syndrome characteristic of a specific personality type.
The article Why Migraines Strike in the August 2008 issue of Scientific American mentions how some physicians continue to be dismissive of migraines and quotes author Joan Didion’s 1979 essay In Bed:
For I had no brain tumor, no eyestrain, no high blood pressure, nothing wrong with me at all: I simply had migraine headaches, and migraine headaches were, as everyone who did not have them knew, imaginary.
Migraines are not exactly a new phenomenon. They have been described by 5000-year-old Babylonian sources and the third president of the United States, Thomas Jefferson, was periodically incapacitated by migraines while in office.
Professor Pamela Reed Gibson lists additional diseases that have been falsely “psychologized,” in her book Multiple Chemical Sensitivity — A Survival Guide:
chronic back pain
post Lyme syndrome
post viral syndrome
temporomandibular joint (TMJ)
Various other sources have noted how physicians in the past have dismissed patients with endometriosis, AIDS, sickle-cell anemia, mercury poisoning, mitral valve prolapse, whiplash, repetitive stress injury and fibromyalgia.
The history of medicine is littered with generally held beliefs that were eventually overturned. In the 1950s, X-rays were considered totally harmless and physicians X-rayed young children and pregnant women with no precautions. X-ray machines were even used as party entertainment and in shoe stores to check the fit of a shoe.
The Wikipedia online encyclopedia has a long list of entries on its page for “Withdrawn drugs.” Some of the listed drugs are widely known, such as Thalidomide and Vioxx. Some are lesser known, such as Diethylstilbestrol, which was given to pregnant women in the belief that it was helpful for the pregnancy, when the opposite was the reality. This drug was also prescribed to young girls to stunt their growth, since tall women had fewer marriage prospects.
Unaffectionate “refrigerator moms” were once believed to be the cause of autism in children.
A problem with a heart valve that could cause heart palpitations, breathing problems, and atypical chest pain used to be written off as anxiety. The real cause was discovered in 1966 and the disease is now called mitral valve prolapse.
AIDS challenged some fundamental beliefs about infectious diseases and the 1980s epidemic in America was mostly within the gay community, so the illness was ignored for years, despite the death of thousands of Americans. Initially, physicians also brushed it off as psychosomatic, until people started dying (the story is told in the book And the Band Played On).
When medical science becomes able to explain a disease, or at least prove that it exists, then acceptance gains ground. But opinions are still slow to change. As Nobel-prize winner Max Planck noted:
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it.
The celebrated Stanford University psychologist, Leon Festinger, once wrote:
A man with a conviction is a hard man to change. Tell him you disagree and he turns away. Show him facts or figures and he questions your sources. Appeal to his logic and he fails to see your point.
In his book The Brain that Changes Itself, Norman Doidge quotes Dr. Michael Merzenich about his research into the recently accepted field of brain plasticity:
Let me tell you what happened when I began to declare that the brain was plastic. I received hostile treatment. I don’t know how else to put it. I got people saying things in reviews such as, “This would be really interesting if it could possibly be true, but it could not be.” It was as if I just made it up.
The professors Nicholas Ashford and Claudia Miller say in the 1989 edition of Chemical Exposures: Low Levels and High Stakes:
The longstanding scientific and medical conviction that ulcers had their origin in stress died very hard. It took more than a decade for the new paradigm to topple the old, even though the evidence of an infection etiology has been available for a relatively long time. The proponent of the now accepted view was initially derided and ridiculed, as have been many pioneers before him in medical science.
In the TIME magazine article The War on Super Bugs, Dr. William Summers of Harvard is quoted about the discovery of phages:
From the very discovery of phage, this field has seen personal attacks, disputes of priority, massive egos and international politics.
Cancer scientist Devra Davis’ two books Disconnect and The Secret History of the War on Cancer provide several examples where physicians and scientists are scorned, ridiculed and even persecuted when their discoveries challenge current dogma and special interests. Disconnect includes stories about scientists investigating health effects from electromagnetic radiation.
Modern medicine has an impressive list of technologies to look at the brain: EEG, QEEG, MRI, fMRI, PET, CT, SPECT, etc. But this alphabet soup of technological wizardry is humbled by a simple headache! There is still no way to objectively show someone has a headache.
Everybody has had a headache, so we all know they exist. However, if only ten percent of people ever had a headache, headaches would probably be controversial and surely some physicians would self-assuredly claim headaches were simply imagined.
Powerful egos in the way
The practice of medicine tends to attract people with powerful egos. Egos that do not like to be proven wrong.
The classic example is the physician Ignaz Semmelweis, who worked in a hospital in Vienna, Austria in the 1840s.
He noticed that physicians who washed their hands after seeing each patient, including autopsies, had much fewer deaths from infections on his maternity ward. He proved it by keeping statistics on how many women died on his ward, compared to another maternity ward where the physicians did not wash their hands.
Bacteria and viruses had not yet been discovered, so Dr. Semmelweis could not explain why washing hands made such a difference, but his numbers were very clear and irrefutable.
The story quickly spread around Vienna and pregnant women flocked to Dr. Semmelweis’s ward. The other physicians took great offence that they should be causing harm to their patients — and for their lost business. They drove Semmelweis out of town. He died penniless and it took decades before proper hygiene was introduced. Countless women died needlessly from infectious diseases after giving birth.
An example from the 1990s is Dr. George Lundberg, who was the editor of the Journal of the American Medical Association for seventeen years. He claims in his book Severed Trust, that he was forced out when he published articles critical of medical practice in the United States, including one article that showed fully 44% of physician diagnoses were wrong, when checked by autopsy after the patient had died.
Another turf war is raging today, between allergists and other physicians on one side, and physicians treating their patients based on an environmental perspective on the other.
It is an affront to orthodox physicians that patients can be harmed by chronic low levels of chemicals and electromagnetic radiation. And that even drugs can be harmful. They much prefer to label those “difficult” patients as mentally disturbed and fill them with calming drugs rather than doing the real work of finding the underlying causes.
Doctor Theron Randolph is credited as the pioneer of environmental medicine. He published his first book in 1962. The battle between these opposing camps has raged ever since, especially since the 1980s when a lot of physicians were won over by Dr. Randolph and patient groups became vocal and demanded to be taken seriously.
Patients started suing employers over the toxic chemicals they were exposed to at work. It became very lucrative for physicians to support these companies’ claims that MCS was not a “real” illness and the people were not really sick. Some of these physicians specialized in examining MCS patients on behalf of manufacturers and insurance companies, and also worked to keep the issue controversial by talking to newspapers, publishing articles and speaking at medical conferences.
The state of California passed a law to fund MCS research in 1984, but it was vetoed by the governor after lobbying by the California Medical Association. Their argument was apparently that MCS couldn’t possibly be real, and therefore it made no sense to study it.
Living with a controversial illness
While the warring physicians and medical societies have squabbled for decades, the patients and family physicians have been caught in the middle. This has had serious consequences.
The average family physician may be at a loss for what to do when someone shows up with MCS or EHS. The physician may not even have heard about these illnesses, or may have heard they are controversial, or even thought “psychosomatic.” In some cases, the physician chooses to say nothing, leaving the patient to figure it out for herself, which can take years.
In more recent years, general practitioners seem more willing to do the honorable thing and level with the patient in some way or another. Even though the physician can’t offer any help, even saying that the problem may be environmental can provide a starting point to various self-help books and web sites (despite their varying quality).
Unfortunately, in many cases the physician has responded with hostility when a patient came for help. The practice of medicine seems to attract people with very powerful egos who see it as a personal insult when a patient presents with a problem beyond their understanding. Or even worse: if a traditional allergist finds the patient is threatening his orthodox world view.
Many stories circulate in the patient communities where the physician reacted with suspicion, hostility and even ridicule towards a patient. Stories that outsiders easily dismiss, as they’ve only seen the cool, composed and confident physicians – sometimes with an air of superiority.
In a few cases, the patient has been forcefully removed from her home and committed to a psychiatric ward, because the physicians thought the patient was crazy for believing chemicals and electromagnetic fields were harmful.
Patients with environmental illnesses are routinely denied safe access to health care facilities, such as hospitals and clinics. Elderly patients in need of assisted living or nursing care simply have no safe places to go.
Health insurers routinely deny paying the medical bills for treating people with a controversial illness. This is a particularly big problem in the United States where medical charges are not regulated and patients are routinely billed ten times what an insurer is billed for the exact same lab test or treatment.
The controversies have also caused many sick people to be denied public assistance once they are no longer able to work. Employers and medical facilities refused to accommodate their needs. Loved ones stepped back from helping. All felt justified believing that it is “just all in their heads.” Many people have had to live under deplorable conditions, and some saw no alternative but suicide.
A political problem
Science is only a part of gaining acceptance of a problem. Politics are more important. One example is tobacco: by 1970 the science was already firm that tobacco killed people, but it still took decades for the public to accept it in the United States. Europe was slower still, and some European countries (such as France and Germany) still haven’t fully accepted it. Tobacco use is still growing in Africa.
Another example is when Mad Cow Disease (BSE/CJD) swept over Europe in 1990. The British minister of agriculture, John Gummer, confidently told the public that beef was “perfectly safe” to eat and even fed his young daughter a hamburger in front of the press. Despite these reassurances, 32 Britons died from the disease.
In the 1980s, the Reagan administration in the United States didn’t want to restrict industry emissions of chemicals that destroyed the Earth’s protective ozone layer. In a response to a question about the increased deaths from skin cancer, Interior Secretary Donald Hodel responded that people should just wear hats and sunscreen, and stay in the shade. David Gibbons, a White House official, even called skin cancer a “self-inflicted disease.” (The story was published by The Wall Street Journal, hardly a tree-hugging newspaper.)
There always seems to be some special interest opposing any public health improvement. Some seem quaint today, like the automotive industry’s opposition to seat belts and unleaded gasoline. Some are still well known, such as the tobacco and asbestos industry’s lobbying efforts. Many are ongoing but less known, such as the mobile phone industry and the sugar industry’s efforts to prevent public health information.
The 2006 movie Thank You for Smoking is about a spin-doctor who works for the tobacco industry. In the last scene he lost his job but finds new customers in the cell phone industry. The book Merchants of Doubt tells a similar story, where people specializing in opposing science move from industry to industry.
Funding for science
There are still many unanswered questions about MCS and EHS that cannot be answered without well-funded scientific studies.
It is very difficult for independent scientists to get funding, as few agencies and foundations will support controversial projects. And the diseases will continue to be controversial until solid science has been done. Thus it is all caught in a vicious cycle.
Meanwhile, the existence of MCS and EHS are unfortunately a big threat to several powerful special interests, who would much prefer that these diseases are never recognized as legitimate.
It is well documented that science funded by special interests tends to support the agenda of whomever paid for it. This includes a large meta-study published in the January 22/29 2003 issue of the Journal of the American Medical Association. It combined data from eight articles examining 1140 studies and concluded:
Strong and consistent evidence shows that industry-sponsored research tends to draw pro-industry conclusions.
A Swiss study, published in the January 2007 issue of Environmental Health Perspectives, documented that this is also the case for studies of health effects from mobile phones. Scientists can have a powerful incentive to go along, as they are unlikely to get funding for more research if they present results that are threatening to their sponsors. A scientist who specializes in, say, testing whether chemicals are carcinogenic, will have difficulty entering another field as sponsors prefer scientists with a proven track record over those new to a field. Public funding is limited and is often tied to industry funding, so special interests also have a say over some public funded studies.
There are many ways to tweak a study to arrive at the desired outcome, or at least present a result that is “inconclusive.” The three books Doubt is Their Product, Bending Science, and Wrong provide the sordid details. Wrong cites a study where a third of 3200 medical scientists admit to designing, conducting, interpreting or reporting a study to achieve a specific outcome within the previous three years.
One of the most ludicrous examples of a paper opposing the legitimacy of MCS/EHS came from the psychology department at King’s College in England. Titled Taking refuge from modernity: 21st century hermits, it postulates that people with MCS or EHS are simply afraid of modern technologies to the point that it has almost become a religion. Some of the same authors have also produced some widely cited articles critical of EHS, including a flawed provocation study where the test subjects were exposed to EMF radiation even when considered “unexposed.”
Advocacy for acceptance
Advocacy for a disease is usually up to the sick people to do themselves. This is particularly difficult to do for people with MCS or EHS, as they have a hard time travelling to, and simply being inside, the halls of power. For a vivid example, see the 2017 documentary movie The Sensitives (directed by Drew Xanthopoulos). Here we see the movie’s hero travel to Washington D.C., while enduring great hardship, and is then politely ignored.
It may also be a factor that MCS is seen as a “female disease,” mostly affecting middle-aged women.
It helps if a celebrity steps forward to help the cause, such as baseball player Lou Gehrig did for amyotrophic lateral sclerosis (ALS) and actor Rock Hudson did for AIDS. Or irate families have to campaign for acceptance and research funding, as happened with autism and Alzheimer’s.
Surgeon Sherman Nuland states in his classic book How We Die that:
As a result of all the coordinated effort, the Alzheimer’s research budget in the United States in 1989 was some eight hundred times what it had been only ten years earlier.
But stepping forward too soon can lead to ridicule instead, as happened to the leader of the World Health Organization, and former prime minister of Norway, Gro Harlem Brundtland, when she publicly stated that she was electrically sensitive. And to former first lady of Germany, Hannelore Kohl, when she talked about her extreme light sensitivity.
For more information about chemical and electrical sensitivities, especially how to cope with them, see www.eiwellspring.org.
For historical information, see www.eiwellspring.org/history.html.
A Pain in the Brain, David Noonan, Scientific American, December 2015.
Advice on Ozone May Be: ‘Wear Hats And Stand in Shade’ – Aides Hint U.S. Won’t Move To Stop Chemical Erosion Of the Ultraviolet Barrier, Robert E. Taylor, Wall Street Journal, May 29, 1987.
And the Band Played On, Randy Shiltz, New York: St. Martin’s Press, 2000.
Asbestosis: Medical and Legal Aspects, 4th edition, Barry L. Castleman, Englewood Cliffs, NJ: Aspen Law and Business, 1996.
At What Height Happiness? A Medical Tale, Abigail Zuger, The New York Times, July 27, 2009.
Bending Science: How special interests corrupt public health research, Thomas McGarity and Wendy Wagner, Harvard University Press, 2008.
Chemical Exposures: Low Levels and High Stakes (Second Edition), Nicholas Ashford and Claudia Miller, New York, NY: Van Nostrand Reinhold, 1998.
Chemical and Electrical Hypersensitivity: A Sufferer’s Memoir, Jerry Evans, Jefferson, NC: McFarland, 2010.
Disconnect: The truth about cell phone radiation, what industry has done to hide it, and how to protect your family, Devra Davis, New York: Penguin, 2010.
Doubt is Their Product, David Michaels, New York: Oxford University Press, 2008.
Econundrum – A Tale of Two Diseases, Kiera Butler, Mother Jones, May/June, 2015.
Elderly Man with EHS Abused by Hospital and Nursing Home, Lisa Bryngelson, EI Wellspring, 2014.
Explaining “Unexplained Illnesses,” Martin Pall, Boca Raton, FL: CRC Press, 2007.
How We Die, Sherman B. Nuland, 1993.
Ignaz Semmelweis, Wikipedia.
John Gummer: Beef eater, BBC News, October 11, 2000.
Merchants of Doubt, Naomi Oreskes and Erik M. Conway, New York: Bloomsbury Press, 2010.
Mitral Valve Prolapse, Wikipedia.
Multiple Chemical Sensitivity: A Survival Guide, Pamela Reed Gibson, Virginia: Earthrive Books, 2006.
Multiple Chemical Sensitivities Under Siege, Ann McCampbell, Townsend Letter, January 2001.
Prostituting Science: The psychologization of MCS, CFS and EHS for political gain, Diane Crumpler, Australia: Inkling Australia, 2014.
Psychologizing of Endometriosis, Mary Lou Ballweg, Clinical Consultations in Obstetrics and Gynecology, September, 1995.
Secret Ties to Industry and Conflicting Interests in Cancer Research, Lennart Hardell, et al., American Journal of Industrial Medicine, January 2007.
Severed Trust: Why American Medicine Hasn’t Been Fixed, George D. Lundberg, New York: Basic Books, 2000.
Scope and Impact of Financial Conflicts of Interest in Biomedical Research, Justin E. Bekelman et al., Journal of the American Medical Association, January 22/29, 2003.
Slow Death by Rubber Duck – The secret dangers of everyday things, Rick Smith and Bruce Lourie, Berkeley, CA: Counterpoint, 2009.
Source of Funding and Results of Studies of Health Effects of Mobile Phone Use: Systematic Review of Experimental Studies, Anke Huss et al., Environmental Health Perspectives, January 1, 2007.
Sweet Little Lies, Gary Taubes and Cristin Kearns Couzens, Mother Jones, Nov/Dec 2012.
Taking refuge from modernity: 21st century hermits, I. Boyd, G.J. Rubin, S. Wessely, J R Soc Med, vol 105, 2012.
The Brain that Changes Itself, Norman Doidge, New York: Penguin, 2007.
The Case Against Fragrance, Kate Grenville, Melbourne, Australia: Text Publishing, 2017.
The Secret History of the War on Cancer, Devra Davis, New York: Basic Books, 2007.
The Sensitives, directed by Drew Xanthopoulos, USA: Normie Productions, 2017. DVD.
The War on Super Bugs, Alexandra Sifferlin, TIME, Dec. 25, 2017.
Unlocking the Mystery of ALS, Leonard Petrucelli and Aaron D. Gitler, Scientific American, June 2017.
Why Medical Bills Are Killing Us, Steven Brill, TIME, March 4, 2013.
Why Migraines Strike, David W. Dodick and J. Jay Gargus, Scientific American, August 2008.
Wrong: Why Experts Keep Failing Us – And How to Know When Not to Trust Them, David H. Freedman, New York: Little Brown Company, 2010.