“Don’t use words too big for the subject. Don’t say infinitely when you mean very; otherwise you’ll have no word left when you want to talk about something really infinite.” C.S. Lewis
I added English subtitles. If you cannot find them, click on the icon with the red bar underneath it, as shown in this screenshot. If that does not work, chose 'settings' (the cog symbol) in the Youtube screen, go to subtitles and select English.
The broadcast was watched by over a million people and shared many times on Social Media. In the preparation of it, I asked the editor if she could manage to show how much impact an allegation like this has on the social life of a family. A life that was already under strain due to a misunderstood illness.
While the medical and political discussion about Lyme diagnosis and treatment remains a battlefield, as it has been for the last forty years, at least the people around these fifty families can see through the ‘if there is smoke, there must be a fire’ prejudice. If they don't automatically believe the accusers, it makes all the difference in the world for the ones being accused. The broadcast did this beautifully by focusing on a few people, while no medical experts were included.
The mother in the broadcast, Erica Vrijmoet, wrote the Dutch book Chronically Happy as a ‘friction’ book about the adventures of her family with what she calls the ‘medical mafia’. In 2006 her husband and all of their three children were infected with Lyme by bugs in an Italian swimming pool and she spend all her time, energy and money on taking care of them and finding the possible treatments. After six years of trying to find help in Dutch hospitals, they find medical help abroad.
Her daughter Freek tells the viewers how both she and her sister were traumatised by the raid of ‘Safe Home’. “They tried to tell us that our parents were some sort of criminals. That they inflicted our illness upon us. To me, that was completely ridiculous. My parents were the only ones who fought for us. And then somebody just barges in, basically throws it all out of the window and claim my parents made me ill.”
Her mother Erica reads the ‘allegation’ against them out loud: “The parents were very tender and loving towards each other and their children in our presence. Also the nurses involved found this behaviour to appear unreal sometimes.” Based on accusations like these, they were accused of child abuse and making their children ill.
Lori Dennis, author of Lyme Madness, calls this ‘gas-lighting’. Gas-lighting is a manipulative tactic that can be described in different variations of three words: “That didn’t happen,” “You imagined it,” and “Are you crazy?”.
This is why I am happy to be able to work with the BVIKZ, the interest group that is now investigating the reports of parents about their conflicts with ‘Safe Home’. They are now providing the validation needed for these parents and their children.
This was also my main reason to write my book for caretakers, instead of for the people that are victim of this system that is reversing the blame of a disease that they do not understand. Friends and family can make so much difference by their willingness to understand the complexity and controversies of Lyme. At least I hope they will be less tempted to do an anonymous call to the authorities to report their neighbour or friend, who is simply trying to find out what is wrong with the health of her children and needs to go abroad to find actual help.
A systematic problem around a system disease
'Lyme' is not only a physical systems disease, it is also a social systems problem. An organisation such as Safe Home is bound to follow Dutch law and excisting protocols. They are obliged to follow up on anonymous tips. Because they will be slaughtered in the press, if they miss even one actual case of child abuse.
The social workers of Safe Home need to rely on the judgments of their paediatricians, who are called Confidence Doctors for some reason. They don't know more about Lyme and its invalid tests than your average doctor. All they read in their professional information channel is that Lyme does not excist, that the cause of all these symptoms is MUS and that all patients are conspiracy nuts.
What they don't see, they don't know. Such as the reaction from the director of an American pathology institute that has been conducting Lyme research for over thirty years, that the same magazine refused to publish without any reason provided.
I would hope that the current media exposure and the resulting interaction with the BVIKZ makes them more curious about why Lyme has such a bizarre medical and legal status compared to an equally serious disease such as cancer. I'm pretty sure that parents of children with cancer would not be accused as easily neglect and abuse, as happens to parents of children with Lyme.
At least I hope to start to think more in terms of possibility and nuance, instead of assuming everything about Lyme is as clean-cut as national government policy dictates. Stemming from inadequate diagnostic codes at the World Health Organisation, the confusion about Lyme trickles down from an international institutional level. Leading to unimaginable misery and trauma as described in the recent broadcast.
Yesterday the BVIKZ had a conversation with Tanno Klijn, the chairman of the national board of the Dutch Child Protection Services who is featured in the broadcast. Next week I will interview the chairman of the BVIKZ about the general outcomes of their investigation and her suggestions for improvement. It will be published on the website of the On Lyme Foundation.
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