Should the site continue to exist or be merged with other similar projects (maybe Wikiversity)?
I find it unlikely that the project would best exist outside of Wikimedia.
ChristianKl
Karma: 25,246
It seems like there’s a deep rabbit hole here of fights over illness definition. Jenna Luche Thayer fought a battle for changing how lime disease is diagnosed and wrote $Lyme: How Medical Codes Mortally Wound Corruption and Scientific Fraud about her fight. While that title does sound like she’s a conspiracy nut, she was good enough at fighting her battle to get the UN to add new ICD codes by leveraging the UN rapporteur for human rights which choses that she understands the system well enough to effectively move in it.
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.
I don’t know whether the CDC or MA is being more unreasonable here, but the effect is pretty bad: user-facing websites like TickCheck show MA as now having low Lyme levels.
This makes it sound like TickCheck is a neutral party here. TickCheck doesn’t make money by providing the data to users but makes money by selling tests. It would be easy for them to give their visitors better data but reporting the data like this is a way to put pressure on MA to buy more tests.
The CDC seems to use a definition from the Council of State and Territorial Epidemiologists from 2017. If anyone wants to do more reading about how the current definition came out they published the meeting notes of the working group: https://www.hhs.gov/sites/default/files/HHS%20-%20Transcripts%20-%20Part%205.pdf
I see you’ve quietly dropped the two other reasons to ding credibility I mentioned to focus on the protest, which along with a misquote is your main reason for why Ziz is a liar
I didn’t say that there were three reasons, I only spoke of one reason being that there’s a pattern of behavior. It’s about the generator function. The question is about what generator function explains all three events
We are talking about a person who supposedly follows a coherent decision theory and makes game theory backed moves. I wouldn’t expect that the average LGBTQ+ thinks their actions through in game theoretic terms. There’s also an IQ difference between Ziz and the average human or average LGBTQ+ person where she’s very likely >130 IQ. That means I’m more likely to take a stupid action by a random person as simply a stupid action but expect Ziz to have a better thought out model for why her action makes sense then I would expect for the averge person.
Ziz writes about the importance of not following social conventions and preventing herself from value drift. From the inside I would expect both the Sith robes and the fanfic villian name to be stoic exercises with the intend of immunizing herself against social conventions affecting her. In the post about Pasek’s doom she writes about it being important to be a Gervais-sociopath. Being able to act unconstrained and being able to lie when adventagous is part of being a Gervais-sociopath and the stoic exercises are a way to train mentally into that direction.
My model would explain most weird (as seen by general society) actions of most LGBTQ+ people to be made because even when they are costly (certain people think less of them for it) they are done because the person considers expression of their sexual of gender identity to be a sacred value. Sith robes are not expressions of their sexual of gender identity and thus taking the reputational hit for them shows valuing reputation less.
There’s also sometimes weirdness that comes from lack of social skills and not from conscious decisions that aren’t directly sexual / gender identity. Choosing a fanfic villian name and wearing Sith robes is however done through conscious choice.
It seems obvious to me that false imprisonment of kids is a noncentral description of what Ziz was doing (ie “she staged a protest and unbeknownst to her there were children somewhere” is my model). Given that this was scaled back to a misdemeanor, I imagine that you’re focusing on this specifically for rhetorical effect.
The article was the first impression I got about Ziz (I live in Germany and never have attended a CFAR workshop) and I would expect that I’m not the only person for which it’s true.
You said that the action was only costly with people who Ziz thinks defected with her and that’s not how the action turned out.
While it likely played out worse then she expected beforehand, I don’t think the idea that it was only likely to damage her reputation with the CFAR staff (whom she thinks defected) was a reasonable model of the situation.
I might a naive German, but if people actually get treated for Lyme disease without a test, shouldn’t the doctor bill the treatment through some ICD code to healthcare insurance? In that case the insurance companies should have the good data of how many people get treated for lyme disease.
Is this something about the US healthcare system that makes this hard?
I don’t think any new drug development (outside developing vaccine’s against a targeted that’s easy to vaccinate against because of prior research) is well described as ‘hasty’. While I think it’s worth arguing that developing antibiotics is stupid, the policy circles who care about the topic do think that it’s valuable to develop new antibiotics.
If they would change the regulations to allow for phage therapy and fund it I would also be okay with that, but they do neither.
Assuming Ziz is being honest, she pulled the stunt at CFAR after she had already been defected against. This does not globally damage her credibility.
It got her a criminal record which means it will damage her credibility which every person who runs a criminal background check on her.
Reading https://www.sfchronicle.com/bayarea/article/Mystery-in-Sonoma-County-after-kidnap-arrests-of-14844155.php is going to make any normal person consider the people to have no credibility and having an article like that with your legal name that people can google to find more about you in interactions like applying for a flat, is a heavy reputational cost.
“If a marginalized person claims Something Bad is happening, handles it inappropriate, and copes with marginalization by inverting mainstream aesthetics, they’re systematically a liar”
False imprisonment of kids that are innocent bystanders isn’t just “handles it inappropriately”. None of the LGBTQ+ people I know personally have to the extend of my knowledge done something as bad nor would I expect that to be in their range of possible actions.
As far as Ziz, TDT and falsehoods, she writes herself:
They asked what I’d do, I said I’d socially retaliate. They asked how.
I said I would probably write a LessWrong post about how they thought I’d be bad for the world because I was trans. Half of me was surprised at myself for saying this. Did I just threaten to falsely social justice someone?
So she’s open about having threatened to say false things that part of her believed to be false for retaliation. From the TDT perspective actually fulfilling what you threaten seems quite reasonable.
I’m having a hard time pinning down exactly what the false-positive rate of COVID-19 PCR is, probably due to the variety of labs and test kits, but a lot of estimates I’ve seen have been higher than that.
That should make you update towards those estimates being faulty, because they can’t be true and not just round them down.
I don’t think the Berkeley department of health is as stupid as you propose. In cases where the test has a false-positive rate like that I would expect them to test positively tested people another time to make sure that they are actually positive.
Why do you believe that your concept of freedom is automatically the same as the concept of freedom that other libertarians use?
How is facebook not external?
I don’t think Woke Twitter Leftism has a problem with telling lies to hurt people who deserve to be hurt in their view and that there’s huge reputational risk for that kind of lies in that crowd.
To the extend that this model is accurate, I don’t think it suggests that we should expect her to always tell the truth.
She thinks that since “Cthulu swims left” her faction will gradually grow to dominate politically and the actions she takes that would seem to damage her credibility will become credibility boosting in that future. Her callout posts, her protests, the way she expresses disapproval, it’s all clearly strategized to fit into the ideological pattern of twitter wokescolds and tumblr tenderqueers.
That still doesn’t explain the Sith robes and fanfic villian name.
Your fundamental theory is that Facebook and Twitter, while not actually changing brain chemistry, are so addictive they are like a dangerous drug.
Why do you believe in dualism? (That would be required for reading something on a computer not changing brain chemistry)
Ziz’s whole philosophy is based on TDT and lying is trivially a defection that globally damages credibility
The stunt at the CFAR reunion is defection that globally damages her credibility.
your response is an example of how
My response is an example of me estimating her to have low credibility because she’s willing to do things like that.
Given that she her operating decision theory lets her do things like that, I see no reason to expect her not doing other things that damage her credibility as well.
Wearing Sith robes and naming themselves after a fanfic villian is similar in that it damages reputation among many people and not a strategy to develop a reputation as someone to be trusted.
Any one of the three things alone suggests her seeing it okay to take actions that cost credibility. Together they also suggest a strategic decisions to not value credibility, maybe because seeking credibility contrains her range of actions.
How do you explain those three decisions if you think that she’s committed to upholding her credibility?
In the university power is with those that sit on tenure committies and make the decisions over whom to give tenure.
I think you are making a mistake when you think of tenure decisions being about who has the best CV. Professors seeks to get their students professorships. A powerful professor manages to get professorships for a lot of their students.
In the humanities professors on the left spend over the last decades more focus on winning those power games and as a result they got more academic successors then professors on the right.
A result that’s improves performance of a success metric by an order of magnitude.
What’s your model of what effect you want the post to have on the reader?
LessWrong’s search helps with searching for LessWrong jargon.
Using the efficient market hypothesis to access what the true price of a security should be doesn’t work. On the other hand the stock price is a good reflection of what Wall Street thinks and that’s what’s important for how capital gets allocated.
Last year a new movement strategy for Wikimedia was decided and part of it is the desire to add new forms of content.
One new project that’s at the moment in the process of formation is Wikifunctions.
I don’t know Wikiversity well. Given that WikiJournals decided to work within that umbrellla, it might make sense to do this also under it’s umbrella.
There’s Wikispore that was created as a testbed for new Wikis.