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For Lyme Patients, the French Tick-Borne Diseases Working Group’s Recommendations are Far Superior to US HHS Tick-Borne Diseases Working Group's

Posted By: CrystalRiver
Date: Wednesday, 4-Jul-2018 15:44:42
www.rumormillnews.com

In Response To: Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation (repost) (CrystalRiver)

Dear RM Agents and Readers,

We know this topic is hugely political and financially driven by the pharmacy corporations as well as those pursuing death to anyone who is not adhering to the states thought process.

Those sustainable folks (the we want you dead group), think you are taking to much of 'their' resources. In other words, we will Euthanize you but not treat you for this illness. (really sick stuff)

So whether the French working group is on the right track or perhaps there is just something else mucking up the waters so others cannot see the truth and correctly respond is still up in the air as far as I'm concerned. The French's thought process on this sounds really good. Will things pan out, has enough murder of the species taken place? Are the demons satisfied yet? Do read the information below and remember to use your discernment to figure out why we still are beating our heads on the wall when the answers are clear.

Many will loose a great deal that are connected to the pharmaceutical companies; that includes investors. Yet, in order for the nation of America to heal we must treat the folks that are left and return to a more innocent America. Take the money back from the criminals if that is the hold up. By the way, the criminals if they are stakeholders shouldn't be allowed voting rights, period. Sometimes you have to loose 'everything'; to gain the important 'everythings.'

The money that is holding them back on correct voting, never really existed anyway.

Many Blessings,
CrystalRiver

June 26, 2018
Jenna Luche-Thayer contact: jennaluche@gmail.com

Dear Friends,
Some Updates
After our June meetings with the Special Rapporteur for Human Rights Defenders and other United Nations officials and human rights leaders in Geneva, I went on to Warsaw to give a presentation on the status of human rights of Lyme and relapsing fever borreliosis patients and their human rights defenders. The presentation as well received.
The Warsaw Conference was sponsored by the International Lyme and Associated Diseases Society (ILADS) and there were medical professionals attending from multiple European countries.
ILADS is the medical sociality that has guidelines for Lyme treatment options –including extended antimicrobial treatments– they are patient-centered and have met the internationally accepted standards developed by the US Institute of Medicine.
After Warsaw I went on to Paris, where I just presented another paper, co-authored with Professor Christian Perronne [1] and Doctor of Veterinary Medicine Clement Meseko [2]. Both Professor Perronne and Dr. Meseko are members of the Ad Hoc Committee for Health Equity in the ICD11 Borreliosis codes and have been active in supporting the human rights of Lyme and relapsing fever borreliosis patients and both have provided testimony to the Special Rapporteurs for health human rights and human rights defenders.
In Paris, our paper, Obstruction to Treatments Meeting International Standards for Lyme and Relapsing Fever Borreliosis Patients, was presented at an ICHRHS 2018: 20th International Conference on Human Rights and Human Security and was well received.
The French Tick-Borne Diseases Working Group’s Recommendations
Since arriving in Paris I have had the opportunity to speak with Professor Perronne about the National Plan for Tick-Borne Diseases that was recently and formally adopted by the government of France.
For Lyme patients, the French Tick-Borne Diseases Working Group’s recommendations are far superior to that of the US HHS Tick-Borne Diseases Working Group (US Working Group).[3]
As with the US Congressional Report being drafted by the US Tick borne Disease Working Group, it is the ‘Recommendations’ section of the French National Plan Report that will determine the actions and priorities the government might adopt.
In France, the Right of Access to Treatment Options Is Clearly Preserved
In the report is a chapter named Syndrome polymorphe persistant après une possible piqûre de tique which means ‘Persistent polymorphic syndrome possibly due to a tick bite’.
According to Perronne, this chapter is very important because it allows General Practitioners (GP) to provide one month an empiric antibiotic treatment to Lyme patients –even if the Lyme serology is negative.
The French Report also emphasizes the need to treat symptomatic pregnant women, even if they are seronegative.
Furthermore, if, at the end of the month, if the GP determines it may be necessary to prolong the treatment, the GP may then collaborate with an ‘expert centers’ to decide the duration and the combination of other antimicrobial agents.
To NOTE: Perronne is one of the most globally renowned and qualified medical experts regard tick-borne diseases. Perronne has successfully treated thousands of persons suffering from chronic Lyme and co-infections with extended antimicrobial therapies, and he has maintained records of these therapies and their effectiveness and the health status of his patients post treatment.
In exchange for this freedom to use sound clinical judgment, the French authorities have required that there is a recording of the treatment and follow up data in data bases and/or research protocols. The French authorities have also committed to providing additional monies to these expert centers so that these necessary learning tasks are financially supported.
Additionally, the expert centers must have patient representatives on their steering committees.
Management of Psychic Suffering
The US Lyme community has long criticized the impositions of a diagnosis that has been repudiated by the American Psychiatric Association –it is the ‘Medically Unexplained Symptoms’. Many in the Lyme community also criticize the use of the fraudulent Post Treatment Lyme Disease Syndrome (PTLDS)– a fabricated syndrome that has never been medically or scientifically validated.
PTLDS and MUS have been mis-used to replace the need for antimicrobial therapies with:
x patient-blaming assessments
x the denial of medical care for biological illness
x the promotion of antidepressants, anti-anxiety medications, pain management therapies that have included opioids and counselling
On this topic, the French report contrasts sharply with the long US practice of palliative care for persons –including children and young adults– with systemic Lyme infections and serious health complications from said infection, as well as coinfections.
Unlike the US Working Group’s draft recommendations, the French recommendations also clearly refute these inhumane and degrading practices of replacing medical care for biological illness with palliative care for psychosomatic illness –such practices that are recognized as human rights violations.
According to the French Report,
‘it is necessary to abstain from the false dichotomy of ‘psychosomatic OR biological/organic pathologies.
… A practitioner who does not know how to treat his [Lyme, tickborne diseases] patient cannot use therapies for psychosomatic illness instead of treatment for biological/organic illness and infection.
However, treatment for the psychological distress caused by such infections, as well as psychiatric conditions arising from neurological damage from the infections, may be used in addition to antimicrobial treatments for the infections and biological illness.
Such psychological or psychiatric therapies may only take place if there is a finding they would be useful and after the patient undergoes a thorough assessment by specialists [psychiatrists and neurologists].’ [4]
The Role of Conflicts of Interests in Recommendations
Why are the recommendations from the French report so different –and from the patient perspective, far superior in fundamental ways– from that of the US Working Group’s draft recommendations?
According to French law, conflicts of interests (COIs) must be revealed and can also disqualify experts serving on such committees of national policy and import.
However, in the US, HHS has allowed for the COIs of the US Working Group to remain shrouded in secrecy.
Apparently, the role of undisclosed COIs by those serving on the US Working Group may have a great deal to do with the ‘quality’ of their recommendations which, for the most part, maintain the status quo and appear to direct financial flows to select organizations and individuals serving the Working Group and its Subcommittees.
To NOTE: It has been revealed that both the US Working Group Chair, John Aucott and the Vice-Chair Kristen Honey are holding patents that are directly tied to their areas of oversight and responsibility in the US Working Group. Honey appears to have an unvalidated intravenous nanoparticle ‘Lyme cure treatment’ she has been promoting and Aucott has a patent for CCL19, a biomarker that he apparently claims may be used to determine if a patient should have access to antimicrobial therapies or be designated as PTLDS and only given palliative care.
Conversations with Professor Perronne
Perronne has been deeply involved in the French Working group and has fought for Lyme patients’ human rights to diagnosis and treatment options for decades.
I had the opportunity to speak with Perronne on the number of occasions about the differences between the US Working Group and the French Working Group. The picture with the article was taken in his family garden, where I enjoyed the good company of his family a few days back.
Although not intended as a response to my queries, I think he summarized the difference between the two Working Groups nicely when he told me,
‘My goal has always been to successfully treat patients and I have never tried to make money from human suffering.’ [5]
Perhaps Lyme advocates in the US can now demand the US Working Group provide the same priorities for humane patient-centered support for clinical diagnosis and treatment options as that of the French.

Faithfully,
Jenna

……………………………................................ ### .....................................................................

[1] Christian Perronne, MD, PhD, is chief of an infectious and tropical disease department at the Raymond Poincaré University Hospital, Garches, France (Greater Paris University Hospitals, University of Versailles). He was president of the French College of Professors of infectious and tropical diseases (CMIT), of the Communicable disease commission at the French High Council for Public Health (HCSP) and of several official working groups on evidence-based recommendations. He was vice-president of the European advisory group of experts on immunization at the World Health Organization.
[2] Clement Meseko is a research fellow with the Freidrich Loeffler Institut, Federal Research Institute for Animal Health, Islet of Riems, Sudufer 10, 17489 Germany, on leave from the National Veterinary Research Institute, Vom, Nigeria where he is involved in research on zoonotic diseases.
[3] https://www.has-sante.fr/portail/jcms/c_2857558/fr/borreliose-de-lyme-et-autres-maladies-vectorielles-a-tiques
[4] translated from French
[5] translated from French

From this link: https://www.linkedin.com/pulse/lyme-patients-french-tick-borne-diseases-working-far-us-luche-thayer





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