It seems that the tests are worthless for patients and potentially a net harm given the amount of false negatives they produce.
If you are a company it’s hard to control what 50 different states are doing. It’s easier to lobby for a centralized definition of lyme disease cases that includes lab tests. Then your PR department that controls a website like TickCheck rules that the state that opts out of the centralized definition and starts a more independent health policy should face negative consequences for doing so. Then your lobbyists can go to the law-makers there and say: “Look because your burocrats don’t report proper numbers, your citizens get bad data when they go to TickCheck, can you please put a bit of pressure on your burocrats? In a completely unrelated matter, how is your fundraising for your next race going?”
The meeting notes are interesting.
They first start with a stakeholder perspective by Dr. Catherine M. Brown is the Deputy State Epidemiologist and State Public Health Veterinarian for the Massachusetts Department of Public Health.
She argues among others:
And you know, this authority to collect data carries with it a really great responsibility to each individual patient. So, public health practitioners are required by law to collect only those data which are necessary for the public health function, and also not to release information that resultsin the identification of an affected individual.
[...]
So, we need better diagnostics, especially for diseases like Lyme disease, where diagnosis is based on antibody detection, rather than pathogen detection. We need improved access to laboratory testing for emerging diseasessuch as Powassan, rather than trying to rely on just a few centralized laboratories.
We need continued support for development of public health infrastructure with less focus on disease specific resources, and more broad-basedsupport, so that individual jurisdictions can direct resources at the places where—that they identify they have the biggest gaps.The use of electronic health records and real-timedisease reporting processes through electronic health record data is critical to the sustainability of surveillance, and needs to be prioritized for development.
After she speaks the second stakeholder perspective is by Dr. Sarah Vetter a lobbyst from the Association of Public Health Laboratories.
A bit later it gets more spicy:
Hi, my name is Jenna Luche Thayer. And I have worked globally for 32 years on the rights of the marginalized, and held senior advisory positions for the U.S. Government in the United Nations, and I’m the founder and director of the Ad-Hoc Committee for the Health Equity in the ICD-11 Borreliosis codes, and the global network on Institutional Discrimination. And my expertise includes human rights and transparency and accountability of governance
So, according to one of many odd articles that hasbeen sponsored by 32 million dollars in NIH grants, translational research grants, I’m also “nefarious,”and “dangerous,”and I’m being sponsored by unknown and powerful sources. So, I just want you to know that my husband has invited everyone to our house for a barbecue, so you can know who he is. Anyway, to day, I’d like to talk about some observations and solutions to enhance representation, transparency and accountability in the process that we’re undergoing, and I’m using my expert hat on this. I have personally participated in numerous federal advisory boards, and I know that federal law recognizes two valid and distinct options for public members who are participating. One can be either a representative, or a special government employee.
A representative provides the points of view of non-governmental entities and/or a recognized group such as Lyme patients, people who treat Lyme, et cetera; doctors who especially treat those who persist in complicated forms of the disease, advocates who are perhaps promoting valid diagnostic tests such as the nested PCR/DNA sequencing technologies that uses direct detection and is currently available, and can actually identify the illness before it disseminates.In contrast, a special government employee, which is what the current public members have been asked to do, promote government interests first, and are under the supervisionalandoperational control of the agency, in this case HHS, even on the days when they are not serving on the working group.
And as employees,their wide ranging restrictions include legal, financial, representational, and research limits. For example, they are not allowed, according to the law, as an SGE, to testify against Department of Health Officers, or government line policy, or on behalf of the human rights defenders of this group. And when I talk about that human rights defenders I talk about the researchers, the scientists, and the practitioners of health, who are getting much needed care to this patient group.
They are not allowed to generate earnings from research presentations, publications, and media events that counter the Lyme—the CDC’s Lyme propaganda. They are not allowed to state that the CDC Lyme policy doesnot support human rights violations, or ignores the many potentially fatal medical conditions caused by Lyme. And I want you to know that these are all on record since June 2017. They were accepted by Dr. Danis Pures [phonetic sp], who is a special [unintelligible] for health and human rights. So, given these considerations and options, I recommend that all members be converted to representative status.
Video of her talk:
I don’t want to spoil the rest but it’s a much more interesting read then I would have expected given it being a committee meeting.
It seems that the tests are worthless for patients and potentially a net harm given the amount of false negatives they produce.
If you are a company it’s hard to control what 50 different states are doing. It’s easier to lobby for a centralized definition of lyme disease cases that includes lab tests. Then your PR department that controls a website like TickCheck rules that the state that opts out of the centralized definition and starts a more independent health policy should face negative consequences for doing so. Then your lobbyists can go to the law-makers there and say: “Look because your burocrats don’t report proper numbers, your citizens get bad data when they go to TickCheck, can you please put a bit of pressure on your burocrats? In a completely unrelated matter, how is your fundraising for your next race going?”
The meeting notes are interesting.
They first start with a stakeholder perspective by Dr. Catherine M. Brown is the Deputy State Epidemiologist and State Public Health Veterinarian for the Massachusetts Department of Public Health.
She argues among others:
After she speaks the second stakeholder perspective is by Dr. Sarah Vetter a lobbyst from the Association of Public Health Laboratories.
A bit later it gets more spicy:
I don’t want to spoil the rest but it’s a much more interesting read then I would have expected given it being a committee meeting.