Med(ical genetics)-blr

@velvetdemon I'm doing a full reply because I want to give this question the time and space it deserves, and I really do appreciate your curiosity about this.

The short answer: It is deeply unethical. There are nowhere near enough willing patients in the world to be able to do this, and it would be criminal to put them through this.

The long answer: The one side of the equation you're focusing on is: how much of a drug is too much, to the point where it will cause negative side effects or even death? And this is crucial to know. But it's not just a matter of finding out the lethal dosage of a heart cholesterol medication, you need to know that it can actually lower the cholesterol of any living thing. There is no way to know this without giving it first to...a living thing.

But beyond this, I need to emphasize: The goal of a drug trial is to effectively cure people who are already suffering from disease, who are living on limited time.

Drug trials don't just happen on any member of the public, they need to happen specifically on people affected by the disease you're trying to treat. There is at any time a very limited and very marginalized population of the world affected by early onset, familial Parkinson's disease. Because you cannot ethically induce disease in a human being, you are working with, speaking with, and helping patients and their families who are hopeful and desperate for a cure.

If you were to jump straight to human trials from petri dishes, not knowing absolutely anything about how the drug functions in a living, breathing animal body, it would look like this:

We didn't know that minute quantities of the drug interact lethally with x, y, z medication that people are commonly also taking. X number of patients have died as a result.

We didn't know that the drug is fatal to people with [common variant] in their genetics. X more patients have died.

We didn't know the drug exacerbates x, y, z chronic illnesses. X number of people have acquired permanent, lifelong disabilities.

We didn't know the best way to deliver the drug, so we tried multiple ways: the people who received it intravenously are now suffering from a painful, costly, and debilitating condition that did not happen with the ingested form.

I could go on, and on, and on.

The vast majority of these problems can be nearly or almost entirely averted by testing other animals first.

These are all people who possibly could have waited for the normal progression from animal testing to human testing and thus received better outcomes. Some people will pass away in the time it takes to get to that point, and that's heartbreaking, and we all wish science could be faster.

animal research is not the mad scientist wild west that PETA wants you to think it is. there are extremely strict federal laws in place to protect the well being of these animals. animal welfare organizations like AAALAC ensure that lab animals are treated with dignity & respect and are given enough specialized care & enrichment to be happy and content in captivity, just like AZA accreditation with zoos.

not a single animal from a zebrafish to a mouse to a dog to a macaque goes unaccounted for. if an animal gets moved to a new cage, paired for breeding, has a procedure performed on it, gives birth, gets sick or injured, dies, etc. it is legally required that this information is recorded and kept on file for the US federal government to access. failing to record & retain this information is very much punishable by US federal law.

let me tell you - if you abuse or kill an animal, even a mouse - you are almost certainly getting both fired & blacklisted from the industry. if you abuse or kill a more ‘advanced’ animal, such as a dog or monkey, you will likely face criminal charges. killing a monkey is as serious and disastrous as a nuclear meltdown. you are expected to reasonably explain every illness, injury, or death of an animal under your care. you must record all of this information. animals that are clearly suffering with low QOL are required to be euthanized according to AVMA guidelines.

research animals are highly expensive. yes, even the "lesser" animals like mice. the cheapest mice will run you a few hundred $ per individual, with some of the most expensive mice i've cared for being $25,000 per individual. in research we have the "three Rs" - reduction (reduce amount of necessary animals to a minimum), refinement (refine processes to ensure research is accurate and animals feel no pain or distress), and replacement (replace animals with non-living research models as they become available). i can assure you no proper research team is wasting animals (*do not* say "b-b-but elon musk--" his research team is actively being investigated for animal abuse by the government).

research methods that do not require live animals are currently being looked into & efforts spearheaded by - you guessed it - the animal research industry itself (notice how the animal rights people are strangely silent & unhelpful when it comes to this?) but current technology is rudimentary and does not compare to live animal models.

some research animal fun facts (US edition):

all species of animals are only allowed to have one single major surgery performed on them in their entire lifetime.

institutions with nonhuman primates must have a behavior program in place (run by knowledgeable primate specialists) to ensure that they are happy and receiving enough daily enrichment and social interaction.

institutions with dogs are required to have physical exercise programs in place. this means every individual dog gets a substantial amount of leashed AND free-roaming exercise daily, including playgroups with other dogs.

a majority of nonhuman primates get to retire to sanctuaries like peaceable primate sanctuary, and almost all dogs get retired and adopted out by organizations like homes for animal heroes. some institutions will also adopt out unneeded young rabbits, guinea pigs, rats, etc.

some strains of mice glow neon green (or orange or blue) under UV light. this is not harmful to them and is commonly seen in cancer research.

But to start off, you read that right, Lab Animal Vet. I left a steady paycheck as a technician to spend 4 years earning a DVM and hopefully another 3 in residency just so I can provide veterinary care to research animals. In addition to animal caretakers, research personnel, and investigators, any facility conducting animal research must have at minimum one veterinarian on the pay-roll. Large research facilities (universities, pharmaceutical companies, breeding facilities) often have a whole team of vets. Their job ranges from managing paperwork on the animals and balancing regulations (as was previously mentioned), to approving and editing study proposals, to training technical staff, to standard veterinary tasks like regular health screenings and emergency care.

Every facility I have worked at required veterinary health checks on every animal before they entered a study. This is crucial for good scientific data because you must reduce confounding variables as much as you can. As beemovieerotica pointed out, you don’t know what a drug is going to do once you put it in a living thing. I have grieved over study animals that I was in charge of because the client (small pharma companies, university research groups, etc) thought their compound would be well tolerated in even low dose studies. These animals that I’m specifically referencing were healthy individuals at the beginning of their study, receiving regular health panels and physicals to ensure they were healthy. If they were sick or injured or had some kind of organ dysfunction, they wouldn’t be allowed on study because they could suffer.

Another thing the veterinarians at research facilities are responsable for is approving studies. At least one veterinarian is required to sit on the Institutional Animal Care and Use Committee (IACUC) per federal laws and policies. This committee is required for every facility engaging in animal research, again, per federal law. Their job is to ensure that studies have humane designs while contributing good scientific knowledge. They’re responsible for ensuring that things like enrichment, pain management, and humane endpoints are established within the study design and, if not, making sure those things are added in or the investigator has a damn good scientific reason for excluding something.

The veterinarians are also charged with ensuring an appropriate pain score is attributed to studies (B-E). Anything categorized as an E means an animal suffered and died related to a study and these MUST be reported to the USDA. And speaking of USDA, every facility receives a surprise visit from inspectors yearly to ensure the facilities are properly caring for their animals and recording everything! Not to mention adding on regular inspections from the IACUC and AAALAC to investigate those same things. Any faults regarding animal care, fall on the shoulders of the veterinarian and principle investigators.

Something I made while dealing with my own stuff and hoping drawing this would pick me up somehow. Maybe it worked.

Please, for the love of God, please, make your papers more understandable.

Fuck you

Sincerely,

In the above example, 'huge' is not a very precise term. Could mean anything from "lots" to "About the size of a battleship" to "bigger than expected". Not a very precise term. I'm not sure what OP's field is, but they should probably be using a word that's more specific like "Statistically Significant Differneces" instead of "Huge differences", or maybe "Widespread Impact" instead of "Huge Impact". Whoever is providing critique here should say "the use of 'huge' here is imprecise and can confuse what you're talking about, please use a more specific descriptor".

What people generally are asking for when they want something 'understandable' is Clarity. Complex topics are perfectly fine, but they need to be explained clearly. Purdue has a good guide here, which I'll share the outline of, because it's genuinely good advice for many genres or writing:

Go from old to new information and keep the timeline straight. No Dr. Who Plots.

Use Transitional words when bridging concepts. Words like however, therefore, in addition, also, but, moreover, etc.

Keep your sentence structure simple, and mind where you put subordinate clauses. This is really hard for ADHD people who srt of tend to zig-zag across concepts, but in general, it's better to have several simple sentences than one huge rambling one.

Use Active Voice. Good: "The Comittee decided to postpone the meeting". Bad: "A descision was reached to postpone the meeting by the comittee"

Use Parallel Contructions. If you're comparing several things, use the same gramatical structure to describe each thing.

Avoid Noun Strings. Good: "These projects will stimulate investments" Bad: "Investment Stimulation Projects"

Avoid using the noun version of verbs. Good: "The Plan was implemented sucessfully." Bad: "The implementation of the plan was sucessful."

Avoid Multiple Negatives. Double negatives are confusing as hell, triple negatives are worse.

Chose Action verbs over forms of "to be". Good: "TV can report on events much faster than newspapers." Bad: "One difference between TV and newspapers is the relative speed at which they can report on things."

competent doctor: recognizes that your symptoms sound familiar but also realizes that the illness is outside the scope of their expertise, so they give you a referral

incompetent doctor: doesn’t recognize your symptoms, chalks it all up to a mental health and/or weight problem and refuses any follow-up care

competent doctor: stays up to date on the latest research in their field, is interested in sharing newly-discovered information with you

incompetent doctor: maintains the absolute minimum amount of knowledge to not have their license revoked

competent doctor: approaches their patients with good faith

incompetent doctor: assumes all patients are deceptive and have ulterior motives

competent doctor: recognizes crying and other overt pain symptoms as unacceptable and tries to resolve your pain any way they’re able

incompetent doctor: ignores pain and either refuses to attempt to treat yours or willingly worsens it during a treatment by ignoring your reactions

competent doctor: realizes they don’t have all the answers, isn’t intimidated by the thought that you attend other doctors

incompetent doctor: views their patients as income-generators and feels personally insulted when you attempt to leave their practice

competent doctor: recognizes all their patients are people; will be transparent about your treatment and speak to you with advanced and specific terminology if you demonstrate that you understand

It doesn’t really even end with med school bc after that you have to do residency for a couple years, and residents regularly work for 80 hours a week

and this is pretty much accepted as a norm; the 80 hours is a legal limit but people also fudge those hours pretty regularly so they can go over that limit

which is already so much more than human beings are built for (and a huge barrier to more disabled people being in the field), but it’s completely normalized and pain & physical exhaustion are just things that mean you need more coffee

and the overworking & Grind Culture absolutely distort doctors’ view of pain and this is definitely something that makes them treat patients worse

not trying to defend the specific doctors this post is criticizing, because this is absolutely a problem and most of these are genuine incompetence and/or the doc being an asshole; I’m just trying to say that the parts attributed to coasting & doing the bare minimum are definitely not without cause

Grind Culture in the med community teaching young pre-meds & residents to ignore the pain of overworking themselves —> full-fledged doctors ignoring the pain of others because they think it’s normal to be constantly exhausted and in pain

How can a disease with 1% mortality rate shut down the United States?

Franklin Veaux - updated 6 hours ago, professional writer

There are two problems with this question.

1. It neglects the law of large numbers; and

2. It assumes that one of two things happen: you die or are 100% fine.

The US has a population of 328,200,000. If one percent of the population dies, that’s 3,282,000 people dead.

Three million people dead would monkey wrench the economy no matter what. That more than doubles the number of annual deaths all at once.

The second bit is people keep talking about deaths. Deaths, deaths, deaths. Only one percent die! Just one percent! One is a small number! No big deal, right?

What about the people who survive?

For every one person who dies:

19 more require hospitalization.

18 of those will have permanent heart damage for the rest of their lives.

10 will have permanent lung damage.

3 will have strokes.

2 will have neurological damage that leads to chronic weakness and loss of coordination.

2 will have neurological damage that leads to loss of cognitive function.

So now all of a sudden, that “but it’s only 1% fatal!” becomes:

3,282,000 people dead.

62,385,000 hospitalized.

59,076,000 people with permanent heart damage.

32,820,000 people with permanent lung damage.

9,846,000 people with strokes.

6,564,000 people with muscle weakness.

6,564,000 people with loss of cognitive function.

That’s the thing that folks who keep going on about “only 1% dead, what’s the big deal?” don’t get.

How many more people are dying of non-covid illness because they’re either choosing not to get treatment or there aren’t any beds?

How many households are going to lose their primary breadwinner?

How many disabled people are going to lose their caretaker?

How many couples are going to divorce after losing a child?

How many senior citizens are going to have to move to a nursing home after losing their spouse, or their adult child?

And that’s just personal dynamics. Consider the social.

How many kids are going to drop out of high school rather than repeat a year?

How many kids won’t be going to college because they don’t feel safe on campus?

How many students are deciding against nursing school because they figured out long ago that no amount of clapping is worth getting assaulted by a maskless patent’s family demanding horse dewormer?

How many teachers saw parents spitting on their colleagues at PTA meetings and decided this was their last year in the classroom?

More about long COVID by a young person with long COVID. Inspired by the stories of hundreds of COVID long-haulers.

A sequel to this comic on my long COVID symptoms.

Ko-Fi

(ID under the cut)

-bullet journalling was invented by a man with a learning disability (99% sure it was ADHD but his website now just says learning disability so I can't be 100%) as a system for organizing his life/way to work WITH his learning disability

-the general concept is bullet point the important things you need to do and use a simple system of symbols to mark whether it's done, rescheduled, cancelled, etc. with very little fanfare, keeping it all in one notebook so you know where to easily find the information at a glance

-people pick it up and it starts getting popular

-bullet journaling becomes an aesthetic movement largely populated by white neurotypicals

-bullet journaling has turned into creating an extremely pretty notebook that has some function, but largely depends on complicated decoration and aesthetic function that takes more time to set up than is tenable for the people it was created for

-new entries to bullet journaling feel pressure to shop at particular stores, use particular brands, purchase lots of stationery purely for its aesthetic value, and prioritize the artistry of the pages rather than the information being stored on them

-people who would massively benefit from the original system can only really find information on it from members of the aesthetic movement. There is now a barrier to entry for ppl with ADHD and other similar conditions, as bullet journaling now requires a focus and motivation to start that these same people often lack or struggle to maintain consistently

This is the original guide from the person who made bullet journalling. Super simple. Not at all high maintenance.

A. being able to care for other people is a skill that’s practiced and honed

B. being considerate for each person is so wildly different, 90% of the time you will have no way of knowing how to be considerate for someone until they show you

C. you can try to get better at figuring out what people need implicitly, but all that skill really is is listening so just get better at listening

THE NERDIEST WEDDING PROPOSAL 🤍💍

A different kind of wedding proposal could very well describe the story of this Visayan couple. Both are licensed chemists by profession working as science researchers at UP Diliman.

Corazon Ericka Mae Itang was beyond surprised by her boyfriend’s efforts in asking her hand last July 22, 2021.

Jacob Noel Inguito, made the proposal by making her run a synthetic peptide sample at work which later on resulted to a synthesize “MARRYME” peptide.

Peptides are short sequences of amino acids, which are compounds that make up a protein. Each letter of the “MARRYME” peptide represents one amino acid:

M - methionine A - alanine R - arginine R - arginine Y - tyrosine M - methionine E - glutamic acid

“Last week, one of my labmates (Chay Mendoza) gave me this sample to analyze. This is a normal occurrence in our lab, so I had no suspicions whatsoever. Little did I know that this sample will change my life forever.

So I ran the sample in the mass spec, and checked its spectrum against all known databases. Kaso, wala talaga akong makuhang sequence match. So, I did de novo sequencing instead.

Eh kaya naman pala… hahahaha. The sample was a synthetic MARRYME peptide! 🤯,” she wrote in her post.