The current broadcast of the Danish TV2 documentary by the Dutch investigative journalistic program Zembla led to several disturbing effects in my country. Patients were either angry because they were - again - not being taken seriously, worried that they are being ripped off in private medical clinics or simply upset that this documentary did not focus on the elephant in the living room: that the mainstream medical system does not provide help for Lyme patients.
This current article is both a reaction to the Zembla broadcast as well as an introduction a shorter and simplified version of the report submitted to TV2, so everyone can understand its essence and can see why the documentary is indeed contributing to the violation of human rights of Lyme patients. The report demonstrates how obstructing access to diagnosis and all treatment options that meet internationally accepted standards are human rights abuses against Lyme patients.
Your health practitioners need to know this. Therefore these two articles are meant to empower patients and their advocates to have different conversations with their treating physicians, disability assessment professionals, judges and their social environment.
The documentary and some context
For people who did not see the broadcast, or for those who bought into its framing, the documentary’s main messages appear to be:
- do not trust private clinics in Germany that treat chronic and complicated forms of Lyme Borrelia (LB)
- people who have chronic and complicated forms of LB are to be pitied and protected due to low intelligence, poor judgment and ‘fake illness’
- the authorities know it all and can be relied on. This includes the CDC, whose recent 'warning' for treatment risks was included in the documentary
In contrast, many acute LB infections are still missed because of invalid tests used in the mainstream medical system, up to 83% - according to a recent US survey. Ill people are declared 'cured' after 1-28 days of treatment, regardless of treatment response. Then they are declared 'fit to work', while they can hardly function at all. Insurers don't cover for longterm treatments, leading to hidden poverty and bankruptcies. And Child Protection Services in several countries even seem to accuse parents of children with Lyme of 'child abuse' by default.
These factors combined lead to the shocking fact that suicide seems to be a common cause of death for people with Lyme. Increasingly media such as Fox5 and the Dutch program EenVandaag seem to pick up this alarming side of the story. Other media still uphold the authorities' version of events.
The effects of the Dutch broadcast
As I feared, the Dutch broadcast led to effects that were similar to what happened in Denmark last year: doctors ridiculed their patients, regarded this documentary as 'proof' that persistent Lyme infection does not exist and used it to blame their patients for the use of too many antibiotics - a problem caused by the bio-industry - accusing them of creating 'super bugs'. Zembla allowed for a public stage for sceptical doctors to often call their colleagues 'quacks' and label foreign tests as 'unscientific'.
Zembla is normally considered to be a high-quality program, covering sensitive topics in a nuanced and unbiased way. After the recent broadcast, their Facebook page was filled with angry and shocked reactions of Dutch patients, who now have to deal with the consequences - including the stigmatization by and disbelief of their social surroundings.
It also led to a stream of unscientific public statements. Within hours, an ambitious CPS doctor tweeted "Serology in late phase fully accurate. Negative = no Lyme". Hashtag: #quackery.
Dutch CPS states in their training materials to school teachers, ER doctors, General Practitioners and even to dentists that they should always "first consider child abuse in case of a Lyme diagnosis in a child, which is not confirmed by the mainstream tests", I found this to be an alarming yet predictable effect of the Zembla broadcast. It implies that any child with a seronegative infection will potentially be considered as a 'victim of child abuse'.
I sent a request to Zembla to reconsider their broadcast beforehand, which was denied.
The first step to neutralise the damage done by the Dutch broadcast was to write an article about the hidden connection between ALS and Lyme, which was published before the Dutch broadcast. Its purpose was to provide some counterweight, as a first step.
My reason to address this specific subject was that a Danish lady called Tabitha was portrayed by TV2 as 'naively falling into the trap of foreign quacks, who were supposedly fooling her and trying to rip her off by giving her false hope for recovery'.
Below you can hear how she states how she was actually recovering from the German Lyme treatment and how this was cut out of the Danish documentary. If she really had ALS, improvement would not have been possible.
The original broadcast caused an abrupt stop to her social and financial support, forcing her to stop the treatment. This resulted in a rapid decline of her health. Now it seems too late for her to recover. However, the documentary not only impacts her, but all people in a similar situation.
As an example, in the video below you can see infectious disease specialist Dr. David Martz speak about how his misdiagnosed 'Motor neuron disease' was rather undiagnosed LB, which also responded to extended antimicrobial therapies. MND is the wider category, to which ALS belongs.
Like Tabitha, he was also told he would die from ALS. He received this award 9 years later and he is still alive and thriving. Dr. Martz’s case was actually published in the scientific journal Acta Neurologica Scandinavica in 2006.
If you want to know more about the connection between ALS and Lyme, you can find it in my last article. According to a 1990 study, it is possible that half of the ALS patients actually have undiagnosed and untreated LB.
Embedded in it you can also watch the impressive counter-documentary 'Something is rotten in the state of Denmark', which was made by the Danish patients after the original TV2 broadcast.
To be continued
Soon more publications relating to the TV2 documentary will be made public on the website of the On Lyme Foundation. In the next article you will find the shortened and simplified version of the letter to TV2. This letter hardly focuses on the contents of the broadcast itself, but instead addresses breaches of media ethics, human rights abuses and the appearance of collusion and corruption by the Danish government. It should be noted that TV2 is a government-owned entity.
The full version of the letter can directly be found in this LinkedIn post by the author, Jenna Luché-Thayer.
Author of 'Shifting the Lyme Paradigm', chairman of the On Lyme Foundation and founding member of the Ad Hoc Committee for Health Equity in ICD11 Borelliose Codes
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