Wednesday, 20 December 2017 13:00

Time to start telling a better story

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We all live in stories. Stories we tell ourselves and to each other. But what if we tell the wrong story? A story in which millions of people can simply disappear? The current story about Lyme - called the 'latest fashion disease for young women' by some - is a story compiled of misconceptions, oversimplification, gender and confirmation bias. This article shows that from a social perspective, this leads to an institutional 'gang rape'. This new article was written for the website Lyme Basics as a guest article, to read during your Christmas holidays and as an inspiration to start telling a better story in 2018.

Reading time: 15 minutes

Introduction: professional background and relation to the topic of Lyme Disease

Educated as a social psychologist at the University of Amsterdam, I became interested in how misconceptions or oversimplification can sometimes lead to unnecessary social consequences. My first book was an analysis of the paradoxical consequences of the international ‘War on Drugs’ and showed how that war actually led to an increase of drug sales and use, to criminalisation and the creation of the biggest (privatised) prison population in modern history. It also led to a vicious circle of stereotyping of economically vulnerable groups such as the Afro-American people. What shocked me most, was how American children were encouraged at school to report their own ‘drug abusing’ parents. These parents would then end up in jail for life, while the State took ownership of the children, thus expanding their business of foster parent programs. One could also call this ‘mass manipulation’; disguised under the cloak of ‘protecting the public’.

This lead to my first experience with the reasoning process of high level government. The publication of that book, now 22 years ago, led to an invitation to meet a senior official at the Dutch ministry responsible for the national drugs policy, which was generally regarded by other countries as liberal or forward thinking. He congratulated me on my analysis of the paradox, but told me plainly that they would not change policy anyway, because “people are too stupid”. When I asked him in return if people weren’t kept ignorant because of the policy, I was kindly requested to leave. This experience did neither increase my confidence in government to solve complex issues nor in my ability to directly influence that kind of thinking. Besides, part of my analysis showed how the parties leading that ‘war’ were directly benefiting from having it last to eternity.

Later I went into business education and specialised in ‘soft topics’, such as the understanding of complex social dynamics in hierarchical structures, in ‘whole brain thinking’, in non-linear problem solving and in how to create emergent strategy in situations too complex to allow for a clear-cut way forward. All these prove to be very useful in ‘Lyme Lands’. I simply stumbled across Lyme Disease in the same manner as nearly all other people do. Ten years ago, by some coincidence, I read an article about Lyme, found it eye-opening and decided to have myself tested for it. My main reason was to find out if ‘Lyme’ could explain a lot of strange health issues - including being in a wheelchair in my youth. It did. I recovered from it by using ‘alternative’ treatments and decided to do something about a situation that seemed to affect far too many other people.

The Lyme Labyrinth

Given both my professional background and my personal interest in mass manipulation, I soon recognised a pattern. I discovered a hidden world that people in it often call a ‘parallel universe’, a shadow world or simply the ‘hell of Lyme’. A world characterised by both a desperate search for answers (‘do I have it?’, ‘how can I find out?’, ‘what should I do to get better?’, ‘how can I get acknowledgement for it?’) as by stigma, misconceptions and social isolation. A world in which those at the ‘bottom’ of the system - the vulnerable ones - could hardly find any language to convey what was happening to them to those outside of this world. A world with a life experience that many even compare to living in an invisible concentration camp.

To me it is a world of both hidden horror, abject poverty, despair and isolation as well as of courage, beauty, altruism and heroism. A world hidden behind appearances (most Lyme patients look ‘too good to be ill’), gender bias and a seemingly general inability of society to cope with the severity and scope of this hidden global epidemic and its consequences. I saw people announcing their own suicide to Dutch Parliament in the hope that others could be spared the same fate. The political response was to install an ‘expert centre’ - seven years later - manned by the same people that seem completely unfit to solve the issue, because of their political stance that “Lyme is hard to get, easy to cure and hardly ever becomes a chronic condition”.

So, from a social-psychological and educational perspective, there was enough to work with. I watched the documentary ‘Under Our Skin’, started researching all the literature and online lectures by credible scientists I could find, started listening to many people - both patients, their caretakers and the professionals trying to make a difference for them - and found a hidden warzone. What seems to be a medical-scientific issue to most outsiders, is something completely different to me. To me Lyme Land is a hidden warzone in which people experience one mind-game or ‘gas light’ after the other. 

“Go see the doctor”

My impression is that people only start thinking about health and the health system (or market), when they have to. They simply pay the fee for their health insurance, rely on their government to arrange everything well , for science to progress knowledge and hope not to get ill. They may have heard something on TV or Facebook about ticks or Lyme, but that doesn’t really hit home when it’s not relevant in their lives. Those who do pay attention may buy some insect repellant or a tick remover, to prevent the risk of getting infected. But why would you spend hours, days or even weeks reading about it?

So the first system most people encounter, when they do suddenly get a tick bite or ‘vague complaints', which an internet search shows to be possibly linked to Lyme, is the medical system. Its gatekeepers are the General Practitioners (GP). Again people will assume that these GP’s are equipped with useful practical knowledge based on the latest science, helped by guidelines that allow them to do their job as well as they can. Although this may be the case with other diseases, it is certainly not the case with Lyme.

No tick? Infection with Lyme impossible. A tick attached for less than three days? No Lyme infection possible. A tick bite in a ‘non endemic’ state or country? No Lyme infection possible. No EM ring? Infection impossible. An EM ring? Might be ringworm. A clear EM? Let’s wait for a few months if symptoms develop. An inconclusive blood result? Surely not Lyme. A positive test result? It is probably a ‘false positive’.

You may be part of the ‘select few’ that gets a tick-bite, a clear EM ring, a positive blood result and have your symptoms fit the 40 year old textbook description. The odds are small however. Even so, if you do, your treatment will end after 28 days, because the ‘guidelines say so’. Still ill after treatment? Must be ‘post-infectious’, stress, hypochondria, a ‘conversion disorder’ or MUS (‘Medically Unexplained Symptoms’). And so on. If your GP is willing to keep treating you, because you still can’t get out of bed, are paralysed, going blind or in terrible pain, that GP is at risk of losing his license. While being allowed to treat a cosmetic issue like acne for a year, using the very same antibiotics.

So you’re forwarded to a specialist, based on your most prevalent symptoms, to be neatly put in the best fitting diagnostic box. Brain fog and memory loss? Alzheimer. Tremors? Parkinson. Pain? Fibromyalgia or CRPS. Loss of muscle use? MS or ALS. Joint pain? Rheumatoid arthritis. Tired? ME/CFS or lazy. Trouble with your guts? Lupus. Panic or anxiety attacks? Psychiatry. So many migratory symptoms that it becomes too annoying, time consuming or confusing to the busy specialist? MUS, ’Conversion disorder’, ‘Munchausen’, hypochondria, ‘functional disorder’, 'Anxiety and Affective Spectrum Disorder of Mind and Body’ or ‘Bodily Distress Syndrome’. The latter syndromes are all ‘MUS reinvented’, after MUS was deleted as a invalid concept from the DSM V by the American Psychiatric Association.

One could argue that people are not really misdiagnosed. They are simply giving ‘idiopathic’ diagnoses without a causal relationship to why people get these symptoms. Idiopathic diagnoses have these common denominators: “derived after a clinical assessment without conclusive tests results, cause unknown and no effective treatment available”. Your life expectancy and quality of life suddenly dropped like a rock. Good luck.

Being taken seriously

So there you are. Officially you can’t have Lyme. It is supposed to be rare, mild, self-serving or “our national ticks only bite tourists”. Because the Guidelines and government surveillance data say so and no doctor within the system will dare to treat you out of fear for career suicide. But if you try other paths to get better, several other systems are waiting in the shadows. The next is the media.

Because if you’re unwilling to accept these ‘garbage bin diagnoses’ (as an Infectious Disease specialist recently called them in an interview), roll over and die slowly, you now have but one option left: to find your way in the so-called “alternative field”. This label covers a wide scope: from private doctors who chose to pay more attention to treatment response than to guidelines or the restrictions insurers try to force on them, to all kinds of treatment devices, methods and herbs outside of the pharmaceutical industry. This broad scope of treatment options and philosophies is attacked as one homogenous entity by most media and medical watchdog organisations as ‘quackery’.

To my own surprise still many people buy into this marketing strategy by Big Pharma to kill off all competition. Its strategy is easy to spot. If one osteopath misses a brain tumor, that whole profession is labeled as ‘dangerous’, but if a forensic investigator finds that 20,000 people annually die of medical mistakes in the national hospitals, it is ignored. Many of these so-called alternatives are based on ancient wisdom and have peer-reviewed studies supporting their validity. My own experiences with them are much more positive than with regular health care. On all scales that matter to me: client focus, time taken for appointments, outcomes of treatment, value for money, informed consent, patient-centered care and innovative thinking.

Probably the first system to show up is your insurance (health care costs, disability or funeral) who will try everything to duck their responsibility for reimbursing you anything. The most appalling example I know is that a mourning father was forced to pay back the costs of his son’s funeral, after he committed suicide. Why? “Lyme was no valid reason to commit suicide”. Health insurers routinely use the phrase ‘not medically necessary’ to substantiate their refusal to pay for treatment, but do pay for a lethal injection when people are so sick and disabled that they want to end their life. An internet search produces between 2 and 3 million hits for crowdfund campaigns for longterm Lyme treatments, which insurers refuse to reimburse.

Then you apply for benefits, because you can no longer work in your job, had to close down your own business or had to file for bankruptcy because your savings are depleted from paying for staggering treatment costs. “According to the Guidelines, Lyme is no reason to not be able to work.” If you don’t comply, you’re cut or kicked out of your Benefits completely. These ‘austerity measures’ have already produced unknown hidden poverty and an estimated 30,000 deaths in the UK alone.

Now, if your child is ill, there is another institution waiting in line to ‘help’ you: Child Protection Services (CPS). In the training materials of Dutch CPS for teachers, doctors, dentists and other professionals involved, one can read: “If the child has an alternative Lyme diagnose, ALWAYS think about PCF, which is a serious type of child abuse”. PCF (Paediatric Condition Falsification) is as nonsensical as ‘MUS’, as the absence of a clear medical cause is used to legally reverse blame onto the patient or parent. In this case the legal consequences are that you will be accused of ‘child abuse’ or even ‘manslaughter’ and will likely lose custody over your ill child, who is then neatly put into a somatic diagnostics box and will be mistreated accordingly.

One could argue that these institutions follow their own logic such as applying the principles of profit maximisation, getting the biggest audience for the TV commercials, obeying laws, trying to stay within the current budget or ensuring next year’s budget. However, one saddening result of this institutional chain of violations is that the patients start losing their own social support network, when they need it most. This is why many people opt-in for a life or even death sentence such as MS or even ALS, wherein at least they gain sympathy and financial support from their friends and family. In case of Lyme, if you try to get your story on TV, odds are it will be distorted and edited in such way, that your remaining social credibility and financial support is killed off. Because of these last drops, the bucket too often overflows. Suicide is now arguably the most common cause of death amongst Lyme patients.

This is why my friend and global human rights expert Jenna Luche-Thayer refers to the current way Lyme patients are treated as an institutional gang rape. I often see people exclaiming that they want to be taken seriously, but in a way they already are being very ‘seriously taken’. By the very same institutions and professional groups that are claiming to ‘protect them’ and who have the mandate to do whatever they like.

Freud’s heritage

It appears that gender bias also plays a role at every turn of this labyrinth. To quote a recent article from the ex-chairman of the Dutch ‘Anti Quack union’, a former gynaecologist: "The most widespread fashion disease of the moment is undoubtedly chronic Lyme, or in neutral terms 'persistent complaints after treatment'. Quacks flock to this syndrome and because these patients actually have MUS, there is no therapy available, while the patients with their subjective complaints (fatigue, mood swings, dizziness, headaches, etc.) are desperately looking for doctors who accept that it is a physical illness and who are only too happy to take care of these lamentable victims, especially young women.”

A TED talk by Jen Brea, maker of the recent movie ‘Unrest’ in which the current dismal quality of life of millions of ME patients is portrayed, tells the tale of how emerging diseases such as MS, ME and Lupus affect women much more often than men; up to 90%. This seems to spark a seed that Freud planted a long time ago: a tendency to reason away the ineptitude of the medical profession to admit that they are not omniscient by blaming it on the unconscious psyche of their patient female victims. Freud’s invention of ‘hysteria’ was simply renamed to ‘conversion disorder’ in 1980. Already when I studied Psychology some 25 years ago, Freud was mainly regarded as a curious historic relic. Yet his sexist assumptions still seem to be regarded as ‘evidence based science' by too many people in the medical and bureaucratic professions. As an example, ’Munchausen by Proxy’ (MbP), the very rare psychiatric condition in which disturbed parents inject toxins into their children, is said to “exist mostly in mothers”. Really?

According to psychiatrist Sherr, this is nothing less of a modern variation of the former witch-hunts. A British doctor managed to jail hundreds of mothers of ill children with his MbP hunt, before he was caught out concocting damning evidence and was forced to retire early. Although the accusation of MpB is increasingly more common, the actual disorder is not. According to the renowned psychiatrist Bransfield, who saw one actual case of MbP during his forty year career: "disagreements regarding diagnosis and/or treatment in medicine are common. However when organizations who hold a particular opinion on a medical issue accuse those with different opinions of creating fictitious disease (Munchausen’s or Munchausen’s by proxy), they are misusing diagnostic criteria, the power of the state and loopholes in the law. The proper diagnosis of fictitious disease requires proof of actual contrived illness, such as injecting a toxic substance to create illness. An improper accusation that parents are creating a fictitious disease, when it is instead a medical disagreement, constitutes an actual contrived and fictitious diagnosis of fictitious disease and is an organized and institutionalized form of child abuse.

This stereotyping of mothers of ill children is also well described in the 2007 article by medical research journalist Weintraub. A Dutch organisation helping these parents managed to get a news item on national TV about how tens of Dutch parents with Lyme children are falsely accused of MbP by CPS doctors and another showing how these doctors try to get a Ph.D title on the subject and simply concoct damning evidence against parents. You can hear another expert, a retired professor Paeditrics, state that he only came across this rare disorder three times during forty years. Recently the BBC reported that a shocking 5,000 English parents - nearly all mothers - of children with a ME diagnosis are now under suspicion of again ‘Munchausen by Proxy’. In Denmark, ill children are also locked up in mental institutions. The psychiatrist who kept this girl with ME in there for three years, without achieving any improvements in her health, is Per Fink. He is also the inventor of the ‘Bodily Distress Syndrome’, for which the suggested treatment is ‘appropriate reassurance’. He received an award for it. Once MUS or a similar ‘syndrome’ is in your medical file, insurances will try use it to deny you coverage for any treatment. Yet the tendency to ‘somatise’ diseases is becoming so normal, that in a children’s hospital in New York, a paralysed young girl was ordered to be thrown on a concrete floor in order to ‘exclude she was faking her symptoms’. 

The bleak global grass

Most Lyme patients think that this situation is only this bad in their own country. They hear stories about how other patients are helped in other countries and assume that the general acknowledgement of the disease and the mainstream treatment of patients is better abroad. They believe that the grass is greener elsewhere. Although it is understandable that people wish to have some remaining hope, my conclusion is that the mess is the same worldwide. Australians flee to Switzerland, the Irish to America, Americans to Belgium, Canadians to America, the Dutch to Germany or Ibiza, the Danish to Spain, the Spanish to France, the Swedish to Poland, the English to Ireland, the Turkish to Slovenia and so on. And everywhere the doctors and therapists who are trying to help these very sick people are under severe attacks by both media and medical boards. Coincidentally these attacks often happen days before important legal cases against insurers are brought to court or when new scientific articles are published, which add proof to the large body of knowledge that Lyme infection may be persistent, disables and generates complications that can kill people.

When I started making Lyme ‘my business’, I felt that - as a non-medical educator - the only two things I could really do is teach people how to use their own common (or not so common) sense and to enable social cohesion and action beyond the medical field in order to prevent people from becoming so isolated. These are the two main functions of my book ‘Shifting the Lyme Paradigm; the Caretakers’ Guide through the Labyrinth’. The book directly influences people's perception on an individual level and given the heart-warming reactions by readers, it works. Because of my background in ‘whole brain thinking’, I can frame the inexpressible in ‘languages’ that touch both heart and mind. However, just working on this level did seem enough to really make an impact on the global situation.

So I also work on the most abstract level: the global political system which is dictating scientific, medical, financial and thus social developments. All member states of the United Nations have adopted the ICD coding system - the International Classification of Diseases - which is developed and managed by the World Health Organisation (WHO). And what do you know? Unlike for nearly all other diseases, the coding for and definition of Lyme Borreliosis (which includes relapsing fevers) has not been updated or changed for the last forty years. There are only five ICD codes assigned for Lyme Borreliosis, of which three are explicitly for Lyme infection - early acute infection and two ‘disseminated’ manifestations. This is how an infectious disease has been allowed to spread freely and unnoticed for four decades, due to lack of proper diagnostics tools, lack of accurate surveillance data, lack of knowledge and thus lack of awareness in the general public. This is how during the last decade numbers of people in West Africa could be dying from meningitis caused by relapsing fever, but had it mislabeled as ‘treatment-resistant Malaria’. Or how people get refused in the Dutch Lyme Expert Center, because they are not ‘academically interesting’. They simply do not fit into the narrow and outdated definition. Lyme is coded out of existence.

The ICD system includes codes for a peck from a chicken, for the bite from a cow and even for an accident with a spacecraft. There is however no code for a tick bite. In contrast, Syphilis has hundreds of ICD codes for exactly the same conditions also found to be caused by Lyme Borreliosis. Persistent infection, congenital ‘vertical’ infection and many fatal conditions caused by Lyme, which are backed by over 260 peer-reviewed scientific articles, are now simply missing from the system. Therefore all this information is also lacking from the dropdown menu on your doctor’s computer screen, from the spreadsheets of your insurance company and from the surveillance data of your government or international agencies such as the (European) Centers for Disease Control and Prevention. These CDC are “24/7 saving lives and protecting people”; according to their website. That will be hard to achieve without proper data.

In 2012 the WHO published that “the spirochete Borrelia burgdorferi is carried by insect vectors including ticks, horse flies and mosquitoes. It can survive blood storage temperatures. Blood transfusion transmission is possible.” Eight other strains of the Burgdorfer bacteria have been found to be pathogenic to humans, but whether current tests that were developed specially for three strains can detect all of these is totally unknown. This is how the Australian government can still maintain that "there is no Lyme in Australia”, while glossing over their own finding that over 25% of their blood donors is infected. They manage to do this mental gymnastics by calling it ‘false positives’, using a test they claim to be perfect.

Still the WHO has been unwilling to update their Lyme Borreliosis ICD codes until now. As the outdated and far too limited codes are contributing to obstruction of early diagnosis, care options, coverage, while promoting discrimination and the gross interventions on families aforementioned, the ‘Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes’ has all these put on record with the United Nations as human right abuses.

Because of the privilege to work with this Ad Hoc Committee, a voluntary international group of highly esteemed professionals who are all concerned with generating a proper response to the global Lyme Borreliosis pandemic, I can basically do what I did at the Business University, where I worked as a program manager for tailored educational programs. Again I can work with the best and most open-minded specialists in the different fields needed to address vital questions and to transform complex issues. My role is mainly to combine and present their knowledge in a way that is useful for the different groups that need it to move forward. This includes providing information for several unprecedented and extra-ordinary legal cases in France and the USA, in which laboratories, insurers, individual doctors, the CDC and maybe even an American university are brought to trial for racketeering, anti-trust violation and active suppression of direct diagnostics, using a legal framework originally designed to persecute the maffia.

Telling a better story

One quote in ‘Unrest’ is also very applicable to the misconceptions and dogma around Lyme: “I am not afraid of disease or even death. What terrifies me, is that I can simply disappear, because someone else tells the wrong story about me.” This wrong story about these ‘new’ diseases, which are not that new anyway, results in a waste of life and unnecessary injustice and suffering. These are diseases that are possibly caused by crypto-infections, that are not easily diagnosed with the currently available indirect diagnostic technology and that don’t show up as a clear-and cut ‘symptom package’ to neatly fit into one existing box.

What is more likely? That millions of people all over the world suddenly start sprouting debilitating symptoms, because of some mysterious unsolved past issue in their subconsciousness? That highly functioning people who previous to a tick bite ran marathons, suddenly become ‘pain killer seekers’? That scores of mothers suddenly have the magical power and urge to ‘think their children ill’? That for some inexplicable reason (male) doctors are suddenly found so sexually attractive that young women will come up with any excuse to see them in their office? That far too many children suddenly prefer to rather be paralysed or in constant pain than playing with their friends or in their sports team? Or that the current way of thinking, calcified by the coding system of the WHO and supported by both old-fashioned social bias as well as the financial mechanisms of Pharma and insurances, is simply incapable to address this large elephant in the global living room?

From my perspective, Lyme is rightly regarded as the biggest health threat since the Plague, the most infectious since Syphilis and the most socially devastating since AIDS. It took medical science 500 years to appreciate, understand and cure Syphilis. The current belief system about Lyme mirrors the stigmatisation of dying AIDS patients in the 1980’s, supported by the same kind of misinformation for the general public. Anyway, in my opinion, ‘believing’ should be part of the job description in religious vocations; not in medical science.

As Einstein said: “everything must be made as simple as possible. But not simpler.” Denial, stigmatisation and oversimplification may not be the wisest responses to this pandemic. Yet in the absence of any other response from ‘above’, people may want to educate themselves, care for those already inflicted and start acting together. Recently a group of scientists published an article called “Medical Misinformation Mess” and basically advised the same thing. “Increasing the reliability of available, published evidence may not be an imminently reachable goal. Therefore, efforts should focus on making healthcare professionals, more sensitive to the limitations of the evidence, training them to do critical appraisal, and enhancing their communication skills so that they can effectively summarize and discuss medical evidence with patients to improve decision-making. Similar efforts may need to target also patients, journalists, policy makers, the lay public and other healthcare stakeholders.”

There is always power in numbers and historically all major changes in society have always started from the bottom upwards. If that will happen depends on the narrative we use. It is high time to start telling another story; one in which there is no need for people to simply disappear.

P.S. after being asked to write this article, Lyme Basics owner Teike van Baden, disappeared from the internet. As the Christmas holidays are near and more people will have time to read longer articles, I wanted to put it online and translate it into Dutch anyway. It will also be published there, when he comes back. 

Huib Kraaijeveld, MA.

Chairman of the On Lyme Foundation
Author of 'Shifting the Lyme Paradigm
Founding Member of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes

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