Mis diagnosed as Fibromyalgia, ME/CFS, Musculoskeletal Disease,Poly Myalgia Rheumatica - significantly improved when treated for Lyme Disease.
Perhaps more aptly described as Multi-Systemic Infectious Disease Syndrome - MSIDS.
Jenna Luché-Thayer: Addressing Systemic Obstacles in the Borreliosis Pandemic
Jenna Luché-Thayer gave this presentation at the International Lyme and Associated Diseases Society (ILADS) Annual Scientific Conference in Boston, November 10, 2017. Jenna is the founder of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes.
In this presentation, Jenna explains how the Ad Committee is trying to address global obstacles to care experienced by Lyme and relapsing fever borreliosis patients and describes how you can use this information to address these human rights abuses. The Ad Hoc Committee was formed in 2016 to:
update the World Health Organization’s (WHO) International Classification of Disease (ICD) codes for Lyme borreliosis (LB)
demonstrate how the outdated codes are contributing to human rights violations
The Ad Hoc Committee members:
represent Asia Pacific region, Africa, North and South America and Eastern, Western and Northern Europe
represent scientific, medical and human rights experts, clinicians and professors across well respected academic and research centers and as advisors to governments and WHO
have worked on borreliosis for two and three decades
have many hundreds of peer-reviewed publications and studies
The Ad Hoc Committee’s report, Updating ICD11 Borreliosis Diagnostic Codes was accepted by WHO prior to the March 30, 2017 deadline for code revisions. Also, as per WHO’s required rules and process for ICD revisions, each recommendation with supporting references was entered onto the WHO ICD Beta Platform.
The Updating ICD11 Borreliosis Diagnostic Codes report was also submitted to Dr. Dainius Pūras, the United Nations Human Rights Council’s Special Rapporteur for the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.
The Ad Hoc Committee was then invited to meet with Dr. Pūras in his official capacity on June 7, 2017 —an event that does not take place unless there exists a legitimate cause for concern about violations of the right to health and other health-related human rights.
Dr. Pūras accepted all the Committee’s documentation including reports, books and videos, PowerPoint and verbal testimony, his Senior Human Rights Officer and Team Leader put them into record. Dr. Pūras also told the Ad Hoc Committee how he could support this effort within the framework of his mandate.
The report is now a published document with an assigned ISBN number. Therefore, it may be cited and quoted as a reference for many purposes including medical, scientific, legal, human rights, public health and economic analysis. For more details - see https://www.linkedin.com/pulse/addressing-systemic-obstacles-borreliosis-pandemic-jenna-luche-thayer/
(posting below for those who don't use linkedin.)
Addressing Systemic Obstacles in the Borreliosis Pandemic
November 15, 2017 —contact jennaluche@gmail.com
On November 10, 2017 global human rights expert Jenna Luché-Thayer gave a comprehensive presentation to over 700 medical and scientific professionals attending the International Lyme and Associated Diseases Society (ILADS) 18th Annual Scientific Conference in Boston [1].
Luché-Thayer is the founder of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. In this videoed presentation, Jenna explains how the Ad Hoc Committee is trying to address human rights abuses such as the obstruction to healthcare experienced by Lyme and relapsing fever borreliosis patients across the globe.
Luché-Thayer provides compelling evidence as to how this disease has been politicized by the World Health Organization (WHO) and other key institutions responsible for public health and medical care. The entire presentation —Addressing Systemic Obstacles in the Borreliosis Pandemic— is for available for free viewing on YouTube.
The presentation also explains how the Ad Hoc Committee’s report, Updating ICD11 Borreliosis Diagnostic Codes: Edition One [2], may be used by those concerned with the injustices associated with this pandemic.
The report was accepted by WHO prior to the March 30, 2017 revisions deadline for international classification of diseases (ICD) codes. Also, as per WHO’s required rules and process for ICD revisions, each recommendation with supporting references was entered onto the WHO ICD Beta Platform.
The Updating ICD11 Borreliosis Diagnostic Codes report was also submitted to Dr. Dainius Pūras, the United Nations Human Rights Council’s Special Rapporteur for the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.
The Ad Hoc Committee was then invited to meet with Dr. Pūras in his official capacity on June 7, 2017 —an event that does not take place unless there exists a legitimate cause for concern about violations of the right to health and other health-related human rights. Dr. Pūras accepted all the Committee’s documentation including reports, books and videos, PowerPoint and verbal testimony, his Senior Human Rights Officer and Team Leader put them into record. Dr. Pūras also told the Ad Hoc Committee how he could support this effort within the framework of his mandate.
The report is now a published document with an assigned ISBN number. It may be cited and quoted as a reference for many purposes including medical, scientific, legal, human rights, public health and economic [3]. The following key information can be cited from the report:
The record now shows 100s of peer-reviewed studies —written by nationally and internationally recognized scientists and medical researchers from across the globe— describing:
Congenital Lyme disease, persistent infection, Borrelial lymphocytoma, Granuloma annulare, morphea, localized scleroderma, lichen sclerosis and atrophicus, Lyme meningitis, Lyme nephritis, Lyme hepatitis, Lyme myositis, Lyme aortic aneurysm, coronary artery aneurysm, late Lyme endocarditis, Lyme carditis, Late Lyme neuritis or neuropathy, Meningovascular and Neuroborreliosis – with cerebral infarcts, Intracranial aneurysm, Lyme Parkinsonism, Late Lyme meningoencephalitis or meningomyelo-encephalitis, Atrophic form of Lyme meningoencephalitis with dementia and subacute presenile dementia, Neuropsychiatric manifestations, late Lyme disease of liver and other viscera, late Lyme disease of kidney and ureter, late Lyme disease of Bronchus and lung and seronegative and Latent Lyme disease, unspecified.
Furthermore, no medical condition was entered into record if it had less than three supporting peer-reviewed publications. The Committee members then gave verbal and additional written testimony as to how medical practitioners on the Committee had collectively and effectively treated tens of thousands of patients with persistent and complicated LB with clinical practice guidelines that have meet internationally accepted standards.
These materials firmly establish the significant possibility that patients with persistent Lyme require biological medical care —not as a matter of opinion, but as a matter of scientific fact. Furthermore, treatment options for persistent Lyme —including extended and combination antimicrobial therapies— that have met internationally recognized standards for clinical guidelines are available, as are accredited educational programs on how to implement such therapies.
The record also shows many different types of health human rights violations. These include how obstruction of access to treatment options from clinical practice guidelines that meet internationally accepted standards for guidelines violates the Availability, Accessibility, Acceptability, Quality (AAAQ) of Health Human Rights imperatives for "non-discriminatory" practices and medical ethics. The record also shows how LB patients who have received clinical diagnosis are routinely denied care should laboratory tests fail to confirm their clinical diagnosis.
Many practices resulting from these codes are recognized as human rights violations. Furthermore, the codes are linked to policies recommending practices that:
—for many patients, prevent proper diagnosis and obstruct access to treatment options that meet internationally accepted standards
—promotes discrimination based on illness manifestations
—misapplies somatic diagnosis [4] to deny medical care
—obstructs treatments based on illness manifestations
—promotes discrimination based on financial status
—supports attacks on human rights defenders —including medical practitioners, scientists and researchers who act on behalf of this vulnerable patient group
—restricts information regarding treatment options that meet internationally accepted standards
—routinely excludes key stakeholders —such as medical practitioners, researchers, patients and caretakers who are concerned with persistent and complicated cases of LB —from decision-making venues … making these stakeholders invisible to policy makers, economists and other practitioners and researchers
—permit sick children under treatments that meet internationally accepted standards be forcibly removed from their parents —and there are many cases where such parents are falsely accused of poisoning their children or Munchausen by Proxy
—support alarming cases where euthanasia is encouraged over treatments that meet internationally accepted standards
To summarize, the science and medical knowledge regarding persistent and complicated LB —from hundreds of peer reviewed publications written by nationally and internationally recognized experts— has been routinely ignored or suppressed. Furthermore, the human rights defenders of this patient group are routinely threatened and punished for fulfilling their Hippocratic oath to this marginalized patient community. Despite this institutionalized obstruction to care, tens of thousands of patients with persistent and complicated Lyme and relapsing fever borreliosis have regained quality of life, manage their illness and have become productive and contributing members of society by overcoming these obstructions and gaining access to extended treatments that meet internationally accepted standards for clinical guidelines.
The widespread discrimination experienced by Lyme and relapsing fever patients has been systemic and institutionalized across ICD codes, national health policies and medical and insurance systems. Altogether, these factors have led to gross human rights violations that are on record with the United Nations Human Rights Council’s Special Rapporteur for the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.
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[1] The full presentation is available for viewing on youtube: https://www.youtube.com/watch?v=LLIO0r1mCcE (titled: Jenna Luché-Thayer: Addressing Systemic Obstacles in the Borreliosis Pandemic)
[2] Updating ICD11 Borreliosis Diagnostic Codes Authors: Jenna Luche-Thayer, Holly Ahern, Dominick DellaSala, Sherrill Franklin, Leona Gilbert, Richard Horowitz, Kenneth Liegner, Clement Meseko, Mualla McManus, Judith Miklossy, Natasha Rudenko, Astrid Stuckelberger. Contributing researchers: Joseph Beaton, John Blakely, Phyllis Freeman, Kunal Garg, Huib Kraaijeveld, Vett Lloyd, Leena Merilainen. Cees Hamelink - Senior Advisor, Jeff Levy - editorial support, Angelica Johannson - organizational support. Publisher: CreateSpace Independent Publishing Platform (October 7, 2017). ISBN-10: 1978091796 and ISBN-13: 978-1978091795
[3] The report is now available on Amazon and all proceeds support the voluntary work by the Committee.
[4]Medically Unexplained Symptoms or MUS has been repudiated by the American Psychiatric Association (APA) and removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM).
CONCLUSION TO THE VIRAS STAKEHOLDER COMMENTS In view of the extraordinary number of opportunities that these NICE (National Institute for Health and Care Exellence) guidelines provide for putting
doctors and patients at serious risk, it is essential for all interested parties to be aware that NICE
take no responsibility for any misleading information or dangerous advice included in their
guidelines. Here is a typical NICE Guidance disclaimer: “Health care providers need to use clinical judgement, knowledge and expertise when deciding
whether it is appropriate to apply guidances. The recommendations cited here are a guide and
may not be appropriate for use in all situations. The decision to adopt any of the
recommendations cited here must be made by the practitioners in light of individual patient
circumstances, the wishes of the patient, clinical expertise and resources. The National Clinical
Guideline Centre disclaims any responsibility for damages arising out of the use or non-use of this
guidance and the literature used in support of this guidance.”
(https://www.nice.org.uk/guidance/cg138/evidence/full-guideline-pdf-185142637) Whilst NICE have discarded a wealth of research and evidence as unsuitable in preparing their
guidance, that same evidence may nevertheless stand-up in court. Examples of foreseeable
harms to patients are: if and when the restrictive treatment recommendations fail to eradicate a
Lyme infection and a patient suffers injury as a result, or, if and when laboratory testing deprives
a patient of a necessary diagnosis and treatment, and they suffer injury as a result. Then the
evidence that has been ignored may receive a fair hearing in legal proceedings, especially as
much of this information comes from very experienced scientists and physicians. Harms to
patients and complaints against doctors are not just predictable, they are inevitable if doctors with
Lyme disease patients follow the advice as presented in the draft form. However, none of this is
any consolation to doctors who do not want to spend their time dealing with GMC complaints and
law suits, but who simply want to help their patients based on a balanced presentation of the
available pool of knowledge. VIRAS and others have provided ample evidence of foreseeable harms resulting from
misleading advice about Lyme disease. NICE may wash their hands of any responsibility
by claiming that individual doctors are responsible for their clinical decisions, but they can
and will be held to account for negligently misleading the public and government
agencies, discriminating against sick and disabled patients, and permitting their
procedures to be exploited by groups and individuals with competing interests. Doctors do not have to follow NICE guidelines but they must be able to justify their clinical
decisions. The USA Centers for Disease Control and Prevention (CDC) now estimate that they
have over 300,000 cases of Lyme disease per year. Some of the most experienced and
knowledgeable Lyme disease doctors and scientists in the USA have produced reliable and
trustworthy advice on the management of diverse aspects of Lyme disease. For doctors who
want a thorough understanding of Lyme disease medicine, including the limitations of current
18
knowledge, VIRAS recommends the authoritative resources listed here: http://www.ilads.org/Lyme/treatment-guideline.php VIRAS reject the NICE draft guideline as unfit for purpose. It contains some downright dangerous
advice and too many contradictions to even form the basis of a semi-reasonable guideline. It is
biased, discriminatory and appears to be designed to serve undeclared agendas. It implies
certainty where there is none. Where it admits uncertainty it omits to provide balanced views to
allow doctor’s and patients to make informed choices and give informed consent as is required in
the practice of medicine in the UK. This makes the draft unethical. It evades awkward and
potentially embarrassing issues such as the inaccuracy of testing provided by the NHS, which it
misrepresents with false assurances. It evades the serious medical issues of chronic Lyme
disease, coinfections, misdiagnosis of Lyme as some other condition, and inadequate treatment.
The guideline is not quantitative or qualitative or a rational amalgam of both. It is bereft of
scientific discipline or basic humanistic and medical values. NICE should have halted the process and rejected the task of producing a guideline when it
became apparent that the vast majority of research did not meet the threshold for inclusion.
Instead, it has produced a draft based on just a tiny and biased proportion of decades of
research. The draft guideline is irrelevant to 99% of UK Lyme patients who would be harmed by
its publication. The number and nature of the Research Recommendations clearly shows that not
enough is known to produce a guideline that could remotely approach the required standards for
NICE Guidance. These Research Recommendations relate to absolutely basic medical science
concerned with the diagnosis, treatment and management of Lyme disease. Without good data
to work with, or a balanced presentation of all the evidence available, the end product could only
ever be a self-contradictory and impractical mess. Thousands of UK Lyme disease patients have been obliged to take matters into their own hands
due to the ignorance and incompetence of Public Health England. PHE (incorporating the HPA)
have actively obstructed the diagnosis and treatment of Lyme disease patients for decades. The
victims of this discrimination have been forced to either accept terrible illness which for many,
represents a life-sentence of loss and suffering, or to seek medical help elsewhere. Patients
spend their often meagre income and all their savings to get accurate tests and treatment that
have been denied to them by the NHS. The outcome of the treatment that they are forced to pay for, may not always be the cure that
they sought. This is partly due to the incompetence that has delayed their diagnosis and
treatment for months, years or even decades. Yet for many, their treatment brings great relief.
Some of the appalling chronic symptoms improve or resolve completely. Physical and mental
functioning which could have been reduced to just a tiny percentage of their pre-Lyme infection
levels, are substantially improved and can be maintained with treatment. These patients KNOW
what PHE policies have done to them and are doing to others. They will recognise the PHE
official position on Lyme disease permeating the NICE draft guideline. They are not paranoid or
conspiracy-theorists, they know from their own lived experience that Lyme disease is a national
health threat that is being controlled by vested interests that disregard their Human Rights and
the fundamental tenets for the practice of medicine. It is in spite of PHE that many of these
patients have improved health, and such is the suffering that many have endured, they do not
want others to have a similar experience. With the finest motives that grace humanity, even
though their health and fitness may still be just a sad remnant of the energy they once enjoyed,
they give of that time and energy to help others who will otherwise be doomed by PHE to the
living hell of chronic Lyme disease. The draft guideline shames UK medicine and will bring the good names of the NHS and
NICE into disrepute. The danger to patients is obvious. This confused and confusing
guide will predictably harm patients and threaten the reputation and values of doctors who
place their trust in it.
