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The World Health Organization’s (WHO) International Classification of Diseases (ICD) are used globally to diagnose, treat and undertake surveillance of disease and injuries.
The ICD codes were recently revised and the ICD11 Report was formally adopted in June 2018 by the United Nations and its implementation will begin in 2019.
The US Federal Tick-Borne Disease Working Group’s draft Report to Congress was released to the public in July 2018.
The WHO document recognizes three significant, potentially fatal complications from Lyme borreliosis. In contrast, these serious complications are missing or minimized in the Tick-Borne Disease Working Group’s draft 2018 Report to Congress.
WHO ICD11 Process
WHO has recognized Lyme borreliosis to be a ‘disease of consequence’ since the 1990s. Nevertheless, despite improved practices of transparency for the ICD11 revisions, the subject of Lyme borreliosis was uniquely shrouded in secrecy.
In fact, WHO has not had a publicly-acknowledged Topic Advisory Group assigned to review Lyme borreliosis since 1993.
The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes is an international, all voluntary, professional committee formed to improve the ICD codes for Lyme and Relapsing Fever borreliosis and address the human rights violations generated by inadequate codes. WHO verified acceptance of the Ad Hoc Committee’s Report UPDATING ICD11 Borreliosis Diagnostic Codes, Edition One: March 29, 2017. This Report provided comprehensive recommendations on how the codes should be updated.
In June 2017, members of the Ad Hoc Committee, with renowned scientist Judith Miklossy, shared these concerns and documentation regarding Lyme and dementia directly with Dr. Shekhar Saxena, the senior WHO official responsible for addressing dementia.
The Ad Hoc Committee also met with Dainius Pūras, the United Nations (UN) Special Rapporteur on the right to health. The report UPDATING ICD11 Borreliosis Diagnostic Codes, Edition One: March 29, 2017 was entered into record by the Special Rapporteur. This meeting focused on Lyme borreliosis ICD code issues that:
× appeared to be largely based on science that is rife with conflicts of interests (COIs) and promoted by the Infectious Diseases Society of America (IDSA)
× ignored many of the serious and potentially fatal complications from the disease
× contributed to human rights abuses across the globe
These meetings were followed by on-going media campaigns to inform the public, government and UN officials on the shortfalls of the Lyme borreliosis ICD codes.
Governments’ Actions on Lyme Borreliosis
Meanwhile, the governments of Canada, the United Kingdom, Ireland and the USA developed treatment Guidelines and/or key policy documents for Lyme borreliosis during the ICD efforts by the Ad Hoc Committee.
These policy documents, including the Tick-Borne Disease Working Group’s 2018 draft Report to Congress, ignore and/or minimize:
× Congenital Lyme borreliosis
× Dementia due to Lyme Disease
× Central Nervous System demyelination due to Lyme borreliosis
These policy documents, supposedly developed with stakeholder input, failed to integrate the public comments and scientific publications that describe these debilitating, disabling and potentially fatal complications from Lyme borreliosis.
These documents have either ignored the robust peer-reviewed material describing these conditions and/or based their publications on science that is rife with COIs and promoted by the IDSA. In many cases, recommendations related to these potentially fatal complications were restricted to ‘requires more study.’
These documents also emphasize a syndrome that has never been validated, known as the Post Treatment Lyme Disease Syndrome (PTLDS). PTLDS is presented as part of a mix of terms that includes ‘an illness all in the patients’ heads’ on page 75 of the 2018 draft Report to Congress.
The draft Report makes multiple use of the PTLDS term to refer to 'complications from Lyme infection' yet also states ‘This report does not represent a particular stance on these issues’ (page 75).
Furthermore, the draft Report references articles authored by the Tick-Borne Disease Working Group’s Chair John Aucott. Since assuming his post as Chair, Aucott has published multiple articles promoting PTLDS. On page 104 of the draft Report, his article links PTLDS to the psychosomatic condition referred to as ‘medically unexplained syndrome’ or MUS.[1]
Why does Chair Aucott conflate MUS with PTLDS? Does the Chair Aucott not know that MUS has been repudiated by the American Psychiatric Association and deleted from the DSM-5?
Or, does this conflation have anything to do with Aucott’s patent for CCL19, a biomarker diagnostic he claims can be used to determine PTLDS? [2]
Conclusions
Regardless of what the answers to these questions are, a couple of things are very clear.
The Ad Hoc Committee efforts to update the Lyme borreliosis ICD codes were serendipitous because many persons in the UN system have friends and family devastated by this disease. Fortunately, the BETA platform was open for global review, and the initial rejection of Ad Hoc Committee’s recommendations were revisited.
The ICD11 codes recognize some previously ignored complications from Lyme borreliosis. Among other previously un-elaborated codes for the disease, the new codes include these potentially fatal complications:
× 1C1G.2 Congenital Lyme borreliosis
× 6D85.Y Dementia due to Lyme Disease (Dementia due to other specified diseases classified elsewhere)
× 8A45.0Y Central Nervous System demyelination due to Lyme borreliosis (Other Specified white matter disorders due to infections)
Furthermore, there is additional flexibility under the ‘Coding Note’ for Lyme borreliosis:
× Use additional code if desired, to identify any associated condition.
× Use additional code, if desired, to identify any sequelae.
× “The extension code 'Cause of late effect' is used in addition to both codes to show the relationship between the causative condition and the resulting sequelae.
This means that immediate complications or sequelae (later complications) from Lyme infection can be identified and attached to the Lyme borreliosis code and used to show relationship to the infection.
One Last Observation
The ICD11 codes were developed in a collaborative manner with most countries represented. The Lyme borreliosis ICD codes present an understanding of the disease that is missing from multiple governmental and medical society Lyme Guidelines and the 2018 Draft Report to Congress.
The Tick-Borne Disease Working Group claims,
“The international community is looking to the United States for leadership, science, and innovation on how best to address tick-borne diseases.” [see page 81 of 2018 draft Report to Congress].
Unfortunately, for Lyme borreliosis, this US leadership cannot be found in the Tick Borne-Disease Working Group, the Centers for Disease Prevention and Control (CDC), the National Institute of Health (NIH) or the IDSA.
There are many officials and medical and scientific professionals across the globe who follow the biased science promoted by the IDSA, CDC and NIH. The Lyme Guidelines developed by the Canadian, UK and Irish governments and the Tick-Borne Disease Working Group’s 2018 draft Report all share this science that is riddled with COIs.
However, in key institutions like WHO, the truth of this disease is starting to overcome the propaganda.
The WHO’s ICD11 Lyme borreliosis codes clearly make fools of many.
Extracts from Jenna Luche-Thayer - for further information on this and into the investigations with United Nations on the human rights abuse of Lyme patients and their treating doctors can be read on Jenna's LinkedIn account https://www.linkedin.com/in/jenna-luche-thayer-b75b902b/detail/recent-activity/posts/
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