Monte Skall, executive director of NatCapLyme, interviews Jenna Luche-Thayer - ILADS 12-11-2017
- 7 years ago
Monte Skall, executive director of NatCapLyme, interviews Jenna Luche-Thayer regarding the Power of Lyme award presented to her by ILADS for her work in moving forward patients’ rights as well as an international Lyme agenda. She has done so much, not just for the Lyme community, but for the disenfranchised around the globe. We thank her very much and this recognition is well-deserved!
Here is a short video organized by our colleagues at NatCapLyme to present the impact of our work with the United Nations.
I will be posting the full presentation video in the next few days. EVERYONE of us can use this information to push for change.
To summarize, the following critical information is ON RECORD AT THE UNITED NATIONS:
( I.) Ten human rights violations against Lyme borreliosis (LB) or Lyme disease patients.
Human rights violations of Lyme and relapsing fever borreliosis patients include policies recommending practices that:
1. prevent proper diagnosis and treatment for many patients
2. promote discrimination based on illness manifestations
3. misapply defunct somatic diagnosis to deny medical care**
4. obstruct treatments based on illness manifestations
5. promote discrimination based on financial status
6. support attacks on human rights defenders —including medical practitioners, scientists and researchers who act on behalf of this vulnerable patient group
7. restrict information regarding treatment options
8. routinely exclude key stakeholders from decision-making venues —making them invisible to policy makers, economists and practitioners and researchers
9. sick children under treatment are forcibly removed from their parents
10. in certain countries, there have been alarming cases where euthanasia is offered in place of treatments that have meet internationally accepted standards —such treatments are obstructed and denied
**MUS has been repudiated by the APA and removed from the DSM.
( II.) Hundreds of peer reviewed publications identifying many previously ignored, serious and potentially fatal complications from LB are on record at the UN:
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.
( III.) Tens of thousands of chronic LB patients have been successfully treated with longer term care that meets internationally accepted standards … so that they may live, have a decent quality of life and be productive.
More to come! Thank you - Jenna
Jenna Luche-Thayer on Facebook: https://www.facebook.com/profile.php?id=100011527417750&hc_ref=ARRgylCSHNyjng17y1mXC56hT9aCoFvzEFMkYTCDe3V226mFvwB-x6Km0dhVYiIASK0 and on LinkedIn: https://www.linkedin.com/in/jenna-luche-thayer-b75b902b/
Here is the link to First Officially Recognized Report on Violations of Lyme Patients' Human Rights is Released https://www.linkedin.com/pulse/first-officially-recognized-report-violations-lyme-jenna-luche-thayer/
NatCapLyme on Facebook: https://www.facebook.com/natcaplyme/?hc_ref=ART1HjObmLzj0wonaw-ZyCi4D2USefQ-fdEIwvygWuWmjoM0ZdBSToAi4mli-75ZQLM
Here is a short video organized by our colleagues at NatCapLyme to present the impact of our work with the United Nations.
I will be posting the full presentation video in the next few days. EVERYONE of us can use this information to push for change.
To summarize, the following critical information is ON RECORD AT THE UNITED NATIONS:
( I.) Ten human rights violations against Lyme borreliosis (LB) or Lyme disease patients.
Human rights violations of Lyme and relapsing fever borreliosis patients include policies recommending practices that:
1. prevent proper diagnosis and treatment for many patients
2. promote discrimination based on illness manifestations
3. misapply defunct somatic diagnosis to deny medical care**
4. obstruct treatments based on illness manifestations
5. promote discrimination based on financial status
6. support attacks on human rights defenders —including medical practitioners, scientists and researchers who act on behalf of this vulnerable patient group
7. restrict information regarding treatment options
8. routinely exclude key stakeholders from decision-making venues —making them invisible to policy makers, economists and practitioners and researchers
9. sick children under treatment are forcibly removed from their parents
10. in certain countries, there have been alarming cases where euthanasia is offered in place of treatments that have meet internationally accepted standards —such treatments are obstructed and denied
**MUS has been repudiated by the APA and removed from the DSM.
( II.) Hundreds of peer reviewed publications identifying many previously ignored, serious and potentially fatal complications from LB are on record at the UN:
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.
( III.) Tens of thousands of chronic LB patients have been successfully treated with longer term care that meets internationally accepted standards … so that they may live, have a decent quality of life and be productive.
More to come! Thank you - Jenna
Jenna Luche-Thayer on Facebook: https://www.facebook.com/profile.php?id=100011527417750&hc_ref=ARRgylCSHNyjng17y1mXC56hT9aCoFvzEFMkYTCDe3V226mFvwB-x6Km0dhVYiIASK0 and on LinkedIn: https://www.linkedin.com/in/jenna-luche-thayer-b75b902b/
Here is the link to First Officially Recognized Report on Violations of Lyme Patients' Human Rights is Released https://www.linkedin.com/pulse/first-officially-recognized-report-violations-lyme-jenna-luche-thayer/
NatCapLyme on Facebook: https://www.facebook.com/natcaplyme/?hc_ref=ART1HjObmLzj0wonaw-ZyCi4D2USefQ-fdEIwvygWuWmjoM0ZdBSToAi4mli-75ZQLM