Dr. Robert Bransfield: Presentation on Lyme for Welsh Parliament
"Many patients with [Lyme and other] tick-borne illnesses are given other diagnoses and are told their impairments cannot be cured and can only be managed. As a result, some of these patients are given the diagnosis of multiple sclerosis, motor neuron disease, myalgic encephalomyelitis / chronic fatigue syndrome, “bodily distress syndrome,” and a number of mental illnesses and these diagnostic errors obstructs access to more effective treatments."
"Caution must be used in considering the symptoms as having a psychogenic basis, such as hypochondriasis, somatization disorder, or a psychosomatic condition. If a complex, progressive multisystemic illness begins in a person who had been reasonably healthy throughout most of their life, the likelihood that this is psychosomatic or has some other psychogenic basis is very remote."
Thank you Dr Bransfield for this excellent presentation to the Welsh Parliament summarizing the situation regarding this complex disease. For those who know little about Lyme disease and that includes most doctors then this is an important presentation to listen to.
From Jenna Luché-Thayer Linkedin
https://www.linkedin.com/pulse/breaking-news-julia-morgan-wales-member-assembly-lyme-luche-thayer/?fbclid=IwAR1crzkP_oK-CHr3RuQD7UsIWBFYtQNKNAUsl5IFS4o4GZeiIWuM5I5RlMI
Jenna Luché-Thayer. November 21, 2018
Friends,
Good news! The Wales Member of Assembly (Parliament) Julia Morgan sponsored a November 20, 2018 meeting on Lyme in the historic and beautiful Pierhead Building next to the Welsh Assembly in Cardiff, Wales.
The initiative to hold the meeting came from the hard work of Welsh Lyme, ME/CFS and Morgellons advocate Mark Morgan (no relation to Julia Morgan).
Mark invited Dr. Robert Bransfield to give an overview of the illness and distinguish the psychiatric complications from Lyme in contrast to misapplications of wrongful psychosomatic labels, such as Medically Unexplained Symptoms and Post Treatment Lyme Disease Syndrome.
Michael Cook, a UK expert on the poor reliability of the current two tier Lyme testing used in the UK (and worldwide) presented on the topic of diagnostics.
I presented on the World Health Organization's planned changes for recognizing Lyme in the new medical codes (ICD11) and how the ICD10 and previous versions of the ICD codes contributed to 14 human rights abuses across 11 human rights treatises and were based on corrupted and suppressed science.
Meeting participants included representatives from the National Health Service’s public health and scientific research divisions, the government's division of parks, general members of the public including advocates for ME/CFS and another Member of Assembly.
The participants stayed for some time following the presentations and Q & A to engage the advocates. The engagement included casual and friendly debates between the representatives from the National Health Services and the advocates.
Following her attendance of the Lyme meeting, Member of Assembly Julia Morgan immediately attended a General Assembly meeting where she requested to the Wales Assembly they host a debate on Lyme borreliosis.
She spoke of how Mark Morgan had been advocating to raise the profile and awareness of Lyme in Wales. Julia Morgan stated there is little known about Lyme by the general public and that the disease causes many complications and great suffering.
The initial response by the chair of the meeting was to speak of the public education that has been implemented.
However, I believe that Julia Morgan and advocate Mark Morgan will be able to secure this Assembly debate in Wales. As Julia Morgan said in her presentation to the Wales Assembly, [paraphrased] ‘there have been recent Lyme debates held in the Scottish Commons, the UK House of Commons, the UK House of Lords and the European Union Parliament’.
In closing, it is clear that advocates need to press forward with political mobilizing and lawsuits against fraud and other corrupt practices that abuse the human rights of this patient population.
These kinds of political and legal actions are proving to be more effective for prioritizing and addressing patients needs than depending on 'entities required to address Lyme' such as the US Tick Borne Diseases Working Group and the UK's NICE Lyme Guidelines Committee. Such entities have built in anti-patient bias because they are very polluted by a majority who deny:
—the uncontrolled spread of the epidemic
—many life threatening complications caused by the infection
—how the infection is able to persist and cause on-going damage following antimicrobial therapy
—the immunosuppressive nature of the disease
Additionally, many of the participants in the US Tick Borne Diseases Working Group and subcommittees appear comfortable taking 100s of 1000s and millions of dollars for Lyme research to produce nothing that benefits the patient populations.
In contrast, strategic political and legal actions by advocates can:
—set free long suppressed and valid science
—open access to existing and future diagnostic and medical care options
—secure our human rights.
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Faithfully,
Jenna
also
BREAKING NEWS: Scottish Parliamentarians Take On Lyme
Jenna Luché-Thayer. November 22, 2018
FRIENDS,
On November 22, 2018 Scottish Lyme Advocate Janey Cringean and I met with Scottish Parliamentarians Alexander Burnett and Donald Cameron. Both Alexander Burnett and Donald Cameron represent rural constituents where animal husbandry is a livelihood, as is farming. For these reasons, their constituents are at risk for zoonotic diseases (animal to human transmission of diseases) and vector borne illness including those transmitted by ticks.
Both the two Parliamentarians have genuine concern and established records for protecting the health and well being of their constituents. In addition, they understand the clear links between health and economic productivity versus poor health and economic burden.
Janey and I had a 45 minute audience with the two Parliamentarians. This generous amount of time allowed for deep and frank discussion regarding how obstruction to valid diagnosis and treatments have been driven by the globally disseminated US Lyme policies. We discussed how the 2006 Lyme Guidelines by the Infectious Diseases Society of America are riddled with many conflicts of interests that suppress relevant science and how they stand in sharp contrast to patent language by the same Guidelines’ authors and their affiliates.
For example, one year following the release of the 2006 IDSA Lyme Guidelines that describes ‘Lyme as easy to diagnose, treat and cure’, Guideline co-author Raymond J. Dattwyler [et al] in filed patent No. 7605248 Recombinant constructs of Borrelia burgdorferi. This patent states:
“Currently, Lyme Disease is treated with a range of antibiotics, e.g., tetracyclines, penicillin and cephalosporins. However, such treatment is not always successful in clearing the infection …Treatment is often delayed due to improper diagnosis with the deleterious effect that the infection proceeds to a chronic condition … One of the factors contributing to delayed treatment is the lack of effective diagnostic tools.”
The two Parliamentarians were surprised to learn:
— US Government officials are allowed to earn money off patents and in partnership with private enterprises
— there are CDC and NIH officials who hold Lyme patents
— these officials have the power to repudiate and dismiss patent products that compete with their own, or patents held by their agencies.
These elected representatives quickly understood how Post Treatment Lyme Disease Syndrome has been used to falsely claim a person is a hypochondriac or malingerer, when in fact severe and disabling symptoms are usually due to the treatment failure. This treatment failure is tied to the discriminatory practices of restricted care for Lyme patients, discrimination that stands in contrast to the extended antimicrobials provided to many patient groups suffering from other infectious agents.
Both Parliamentarians embraced the recognition of the seriousness of the disease as validated in the ICD11. They spoke about ensuring their government would actively support the new ICD11 codes for Lyme. They also indicated they would act to support additional efforts to remove the institutionalized obstacles to diagnosis and care.
Our conversation also focused on the high costs of undiagnosed, untreated or undertreated Lyme versus the costs of diagnosis and care. The recent findings from the US that Lyme is costing the US between 25 to 75 billion dollars a year underscores the foolishness and irresponsibility of ignoring the epidemic and denying treatment options that meet international standards.
In closing, I want to emphasize how political work by Janey Cringean and her colleagues have resulted in the Scottish Parliament’s attention to the epidemic in a concrete manner. The Scottish Parliament have held a debate on Lyme and there are actions being considered that will improve access to diagnostic and treatment options. Janey Cringean and her colleagues have made some solid allies who share common goals and can lead some critically important advances with regards to addressing this epidemic and improving patient access to diagnosis and treatment options.
Lyme advocates need to organize political action to make changes!
It is very fortunate that Scotland does not have the same corrupting and perverse incentives surrounding the Lyme epidemic that has created the human rights abuse and failures by the US government.
Recently, it appears that some members of the US Tick Borne Diseases Work Group have tried to gain international support by indicating there are opportunities for joint research projects—mostly funded by US dollars—with Lyme and TBD doctors and scientists in other countries. These members appear to have a recruitment strategy that has the potential partners adopt their language and bias—for example, encourage potential partners to use Post Treatment Lyme Disease Syndrome. To note, the target for these US funded research incentives appear to be non US Lyme leaders who clearly state Lyme infection can be persistent and immunosuppressive requiring extended treatment and have resisted the fraud of Post Treatment Lyme Disease Syndrome.
Healthcare sector corruption is a cost few countries can afford. Decades of conflicts of interests and corrupted US Lyme policies need to be repudiated by other nations.
Despite attempts that appear to want to corrupt Lyme science on a global scale, I anticipate many countries will address the epidemic for sound public health, cost and humanitarian reasons. Ultimately, the claim by the CDC and Tick Borne Diseases Work Group that ‘other countries look to the US for leadership in Lyme and tick borne diseases’ will prove to be absurdly arrogant and delusional.
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Faithfully,
Jenna
Jenna Luché-Thayer. 30+ years working globally on the rights of the marginalized. Former Senior Advisor to the United Nations and the US Government. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination, Inc. —Holding institutions accountable for political and scientific solutions. Email jennaluche@gmail.com
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