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The Law of Maintaining Misery

Written by Huib, published Friday July 13th, 2018

Current healthcare has one major problem. This has nothing to do with the lack of technology or specialised knowledge. It is rather the medical prejudice or Pavlov reaction that new, complex diseases ‘must’ have a psychological origin, when they fall outside of the scope of the current paradigm with its limited diagnostic possibilities. Within a system that is steered with financial motives and rigged towards monetizing diseases – or the denial of them – increasingly more patients and their committed caregivers become lost, isolated, frustrated or desperate by the actual care they receive. Thanks to social media these people find each other and start to organise themselves. I actually believe that the many Facebook groups for Lyme and ME have prevented many more suicides than are already taking place. More people now survive, but is mere survival enough?

“There is nothing outside of yourself that can ever enable you to get better, stronger, richer, quicker, or smarter. Everything is within. Everything exists. Seek nothing outside of yourself.” – Miyamoto Mushashi, famous Japanese samurai (1643)

Some context

Lyme and ME are still called ‘emerging diseases’, even though they both have been around for nearly half a century. Although the World Health Organisation WHO does have ICD codes for acute Lyme and a non-specific one for ME, nobody has any clue how many millions of people suffer from it. Due to these incomplete ICD codes, data collection in all 150 UN member states is either flawed or non-existent. 

Billions of dollars are poured into Zika (with either zero or an unknown number of reported cases), while hardly any government money has been spent in ME or Lyme during the last 40 plus years. According to Willy Burgdorfer, the scientist who discovered the spirochete causing Lyme in 1982, the money that has been spent ever since went to the very people who have produced the same results: nothing. 

Guidelines have been flawed and hijacked by insurers. Blatant examples are the English (not so) ‘NICE’ guidelines for ME, which were based on fraudulent research or the bias behind the (neither) NICE Lyme guidelines for England and Wales. For example, the NICE Committee that developed the Lyme disease guidelines restricted the literature search excluding early example describing chronic Lyme disease. According to researcher Michael Cook, their literature search generated more than 1800 pages of data, more than 900 pages related to “testing”, and excluded all but 126 studies and finally ignored the data from the 126 papers.

Severe conflicts of interests were not reported and politicians taking a stand for these marginalised patient groups were accused of ‘behaviour unbecoming of a Member of Parliament’ (MP), by the very same scientists, who were paid money by insurers to offload costs onto the patients by steering them towards psychiatry. British MP, Carol Monaghan, who had led the petition for the ME debate, responded eloquently: “I say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is “unbecoming”, I stand guilty. If MP’s are not willing to stand up for the most vulnerable in society, what hope do any of us have?” Indeed. 

In Denmark the same psychiatrist Per Fink, who ‘starred’ in the movie Unrest for medically kidnapping a severely ill young lady, is again trying to take another severely ill young lady away from her parents, supported by armed police. He is the one inventing variations of the ‘MUS’ and recently managed to sneak his latest inventions (BSS: Bodily Stress, Bad Science or Bull Shit Syndrome) into the Danish health system. The lawyer of the family has now reported the case to the police, as similar ‘evidence based’ interventions have actually killed people.

A UK doctor is allowed to kill over 600 people in a London hospital despite families’ complaints since 1991, while Lyme doctors are punished for ‘inadequate record keeping’ or for ‘commercialising health care’, simply by having 5 chairs in their IV room. Max Weber defined the State as a ‘human community that successfully claims the monopoly of the legitimate use of physical force’. I start to wonder how long its members (civilians) will allow this to happen, when this force is applied to the most vulnerable in society. This shocking state of affairs is why the UN has accepted the current status quo as human rights abuses against Lyme and ME patients, their parents, and the doctors and scientists taking a stand for their rights at personal risk. 

So what does this mean? Will the UN intervene on behalf of this abused patient group? How, by bombing Denmark or London? Of course not. The fact that I get asked this question now multiple times a day by patients (with lots of emotional pressure on me to ‘save’ them next week) is a tell-tale sign of predictable dynamics in the lower group of any social system. A dynamics that is often characterised by vulnerability turning into passive-aggressiveness out of general pent-up frustration, which always leads to the self-fulfilling prophecy of being regarded – and discarded – as ‘victims’ by the other groups in the same system. 

After spending several years among this subgroup with its particular dynamics, it feels timely to provide some insights from my old profession of business education to help further the effectiveness of patients, who refuse to remain patient much longer. Here are some insights for you to cooperate into saving yourself instead of depending on others, while sabotaging the process. 

Social system dynamics

Any social system in our current society is shaped like a pyramid with different layers: tops, middles and bottoms. Barry Oshry made his lifework of providing insights in the hidden inter and intra group dynamics of these systems, providing individual people with different options to relate and act consciously, which enabled them to create a different outcome. Although Powerlab was originally a weeklong experience in Cap Cod, Florida, the learning context was transformed into a workshop of one day. This was one of my specialisations in international business education.

It works the same with every kind of people: highly experienced business leaders, professionals, artists, young students, scientists and so on. It seems to show a dynamic that everyone recognises, yet which normally remains hidden: the human condition creating predictable interaction and experiences within and between groups. Business clients paid $20,000 for a day, because of how much they got out of it: the possibility to start doing something else together than the predictable misery that regular ‘organised stupidity’ would produce otherwise. Mostly this is called ‘normal life’ or the ‘organisational culture’ in a working context.

Oshry called the groups in this system Bottoms, Middles, Tops and Clients. A group of participants would be randomly assigned these roles; each having a few physical features to clarify the differences their level of ‘freedom’ which would dictate their experience in the system. Tape is used to symbolise the ‘walls’ in the organisation, with Tops having a larger and brighter space than the Bottoms (who are seated on rather uncomfortable chairs and somehow have to work without shoes without any clarity on how to get them back). Clients would just have questions to the organisation, the money to pay for good work and the expectation to be served. A working day lasts 12 minutes. After one ‘working week’ including several evaluations, the workshop itself ends and turns into a powerful, transformational conversation. 

To everyone’s amazement, afterwards, each of the participants would assume their role within seconds – including body posture, different use of language and even bodily odours – and would also believe it was really their free choice to act like that. The forced confusion of the setting (little time, no real structure, new clients coming in all at once) would create the foundation on which each subgroup started to act predictably – within their subgroup and in-between the groups. 

The Tops would try to retract from the chaos and assume they had to come up with a plan; preferably a ‘vision’ to make it sound more credible and inspiring. By the time they would manage to come up with a few (often meaningless) sentences during their ‘retraite’, life had already happened in the organisation and the plan only disturbed whatever the others were doing on their own initiative. Often annoyed by the waste of their well-intended efforts, the Tops would then switch to power-play to try and ‘control’ the processes. Resulting in resentment, covert or open protests and flabbergasted clients. 

The Bottoms would start rather cheerful and eager to start working for the clients. Jokes would be made about cold feet or holes in socks, yet at least they all had that ‘mutual problem’. At the first trigger – a wrong look, a remark, some disappointment – the atmosphere would change and the Bottoms would turn into a mocking, closed subgroup. They would start to suggest that ‘someone else’ should sort things out and if not, they would punish the Others by going on strike and by actively sabotaging the process. The fact that they would also suffer the consequences (by e.g. getting no salary, when Clients refuse to pay for poor work) was simply reasoned away by blaming others for it. 

At this point the Middles would start running around between the Bottoms and Tops, trying to firefight by solving the problems at hand. The more they tried, the more problems arose, making them so busy and stressed individually that they would forget to coordinate with the other Middles and causing them to snap at disappointed Clients who liked to have someone with authority solve their problems. Within days (or rather minutes in the workshop) Middles would start showing signs of burn-out. 

Power and powerlessness in health care

A social system is always divided in positions with different levels of freedom and vulnerability. The amount of distance between the layers predicts the way the system is able to function. It does not matter if it concerns an organisation or a system in which people ‘become member’ because of their misfortune to become ill with a disease like (chronic) Lyme or ME of their integrity to uphold the Oath they swore when they took on their medical profession. These two diseases are mentioned with a specific reason, because of their disputed status – both socially as well as institutionally. 

This status increases the dynamics of distance and isolation that is already present in the Bottom world: an experience of randomness, vulnerability, powerlessness and increasingly a lack of options or resources (shoes) to do something about their fate. This will create an undertone of resentment and often even (passive) aggression, which will cause the other groups to want to distance themselves even more. This distancing is accompanied by their justification as to why the Bottoms themselves can be blamed for this: ‘whiners, too lazy, attention seekers, victim behaviour’, etc. Hardly anybody likes to be honest about their choices that conflict with their self-image of being a ‘good person’ (whatever that means anyway).

At this point the Bottom group starts to be right about being right and starts talking in sweeping, generalised statements about the Others: “See, NOBODY cares for us!” Or its variation: “you only get Lyme, when you get it”. This emotionally charged position creates an atmosphere that reminds me most of the deeply rooted religious punishment of excommunication. If one member disagrees with the belief of the group, he or she is tossed out. There are very few people able to stand this group pressure. If lobsters are put in a basket and one climbs up, towards possible freedom and a future of not ending up in boiling water, the others will yank it back to the coziness of mutual captivity and the security of a miserable future. 

So it is with groups of disgruntled and frustrated patients, in which the energy is too dense and the undertone of the interaction often gets nasty. Those who do care without being ill and desperate themselves, like me, will at some point simply leave these dynamics. Both because the yanking down gets unproductive, because there is nothing new to learn from the complaining as well as because it is – professionally – not a very effective position to shift the status quo between the different groups in the same system. When I was hosting these workshops, I would never participate in them. 

Middles, Tops and Clients have a very different outlook on and experience in the same system and different reasons to get involved with the fate of the Bottoms or not. In health care, these groups can be classified as follows. The Top consists of policy makers, of commercial entities such as insurers that distribute money,  and of ‘experts’ such as authors of guidelines and laws deciding on what disease is ‘real’ or not. The Middle are the professionals; both scientists as the creators of knowledge and doctors (or competing professionals such as naturopathic therapists) applying this knowledge. The Clients can be regarded as the general public; both as consumer of health care information and as tax / insurance fee payers, financing the system together. I would not include caregivers, family members and committed friends into this last group, yet rather place them into the Bottom group as well, as their experience is mostly as horrific as that of the patients themselves. 

To be continued

So what can you do to help move the situation forward, if you are stuck in the lowest, most vulnerable group in the system called health care? What is the most fruitful type of conversation? Try to convince others that Lyme or ME is really real? Spend half of your active time talking in closed Facebook groups to fellow sufferers? Retracting from the conversation in such a group, when someone with a different opinion is bashed by others?

I believe it would be more productive if patients would become active in taking a stand for their own human right to health, learn how to unite and organise, and to be constructive rather than to fight amongst themselves and mutter together that ‘someone else’ should save them. In the second article on the topic, called ‘Insights in successful patient advocacy‘, you can find out more. Also about why I believe that it may be better to stop using the word ‘patient’.

If you appreciated this article, consider to actively support to continue my educational and human rights work, by joining my Patreon crowdfund campaign. My  educational work is financed as I believe how healthcare should be financed: like the old Chinese village doctor, who was paid by the community for keeping people healthy rather than for treating those already ill.

If you’d like to leave a reaction to this article, I’d appreciate it.

Cheers,

Huib Kraaijeveld, MA

Author of ‘Shifting the Lyme Paradigm‘, chairman of the On Lyme Foundation and founding ex-member of the Ad Hoc Committee for Health Equity in ICD11 Borelliose Codes

 

drs. Huib Kraaijeveld

In: Blog Inspiration Lyme Media Human rights Social

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