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Disturbing article about how anti-vaxxers specifically target & exploit grieving parents whose babies died of nonvaccine causes

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Anti-vaxxing groups are specifically targeting parents who have lost young children, convincing them that vaccines were the real cause and exploiting their pain and naivety for profit.  In one particularly awful case, a grieving father said he "couldn't breathe" when he discovered that his daughter was being used in facebook groups and fundraising campaigns as an example of a vaccine-caused death, when he had personally found her wedged face-down between the couch cushions after his girlfriend smoked weed and fell asleep on the sofa. He performed CPR but she was already gone. He had to get the police involved to shut down the fundraising account, but her "story" continues to be promoted by anti-vaxx groups. And then people who believe all these fake stories are persuaded not to vaccinate their own kids. 🤬

https://www.nbcnews.com/tech/social-media/how-anti-vaxxers-target-grieving-moms-turn-them-crusaders-n1057566

 

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It’s absolutely disgusting, isn’t it?  There’s a lot of ableism wrapped up in their nonsense as well.  

 

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This is so messed up. You have an issue, which is parent's right issue at heart, and the right to make medical decisions, but it had to descend into such a wild lot of misinformation to a point of out right manufactured lies to become this mob. A very aggressive mob. I saw on the news about the women in CA who flung a menstrual cup of blood onto the state Senate floor to protest the new laws surrounding exemption reviews. It's just nuts. This whole thing would have stood a better chance of being understood and debated had they stuck with parents rights instead of attempting to turn laypersons into medical doctors and scientists and resorting to fraud to make the case. 

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On 10/3/2019 at 1:38 PM, Æthelthryth the Texan said:

This is so messed up. You have an issue, which is parent's right issue at heart, and the right to make medical decisions, but it had to descend into such a wild lot of misinformation to a point of out right manufactured lies to become this mob. A very aggressive mob. I saw on the news about the women in CA who flung a menstrual cup of blood onto the state Senate floor to protest the new laws surrounding exemption reviews. It's just nuts. This whole thing would have stood a better chance of being understood and debated had they stuck with parents rights instead of attempting to turn laypersons into medical doctors and scientists and resorting to fraud to make the case. 

 

Word.

I have issues with our vaccine schedule and the reluctance of some physicians to tailor the schedule to the needs of the individual child (or even to investigate whether individual needs exist and/or what they are.) Now, however, if one wishes to discuss vaccines AT ALL, one is treated like a flat earth, tin foil wearing, maniacal, conspiracy theorist weirdo. Grr.

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I'm so sick of my anti-vax friends trying to play it like they're a beleaguered minority. As an online community, they're a bunch of hateful trolls with a scientifically untenable position.

There was another article with this exact gist that I used to link to anti-vax folks whenever they tried to play that - we're so discriminated against and hated on and it's so unFAIR! Nice to have a new one.

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This is very disturbing.  and in other news - I'm on an autistic women's group, and someone has been having hissies all day because she posted an (in bad taste) cartoon about "leveling up" after having a vaccine - and it was removed because a lot of people complained.   

why do these people do this?  it's deranged.

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On 10/3/2019 at 1:38 PM, Æthelthryth the Texan said:

This is so messed up. You have an issue, which is parent's right issue at heart, and the right to make medical decisions, but it had to descend into such a wild lot of misinformation to a point of out right manufactured lies to become this mob. A very aggressive mob. I saw on the news about the women in CA who flung a menstrual cup of blood onto the state Senate floor to protest the new laws surrounding exemption reviews. It's just nuts. This whole thing would have stood a better chance of being understood and debated had they stuck with parents rights instead of attempting to turn laypersons into medical doctors and scientists and resorting to fraud to make the case. 

that's all they have.

1 hour ago, JoJosMom said:

 

Word.

I have issues with our vaccine schedule and the reluctance of some physicians to tailor the schedule to the needs of the individual child (or even to investigate whether individual needs exist and/or what they are.) Now, however, if one wishes to discuss vaccines AT ALL, one is treated like a flat earth, tin foil wearing, maniacal, conspiracy theorist weirdo. Grr.

which is really unfortunate, as some kids really *need* a slower schedule.  I prefer a slower schedule, but there are parents who (aren't necessarily against vax, but) wont' follow through with it in a timely manner - so they jab everyone as fast as they can.

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I googled some of the anti-vaxx sites referred to in the article, and it's hard to believe most of those posts aren't written by Onion staff. Every single illness/injury/condition that can occur in childhood except a broken limb is attributed to vaccine injury, from autism, ADHD, and developmental disabilities to asthma, epilepsy, cancer, reflux, bacterial infections, minor rashes, and the common cold. SIDS is fake diagnosis invented by the CDC to cover up vaccine deaths. One guy said he had a "recovered memory" from when he was vaccinated as a toddler and he could "immediately feel the toxins traveling into my brain" and now he realizes that his ADHD and other life-long mental health issues were caused by vaccines and he wants to know "how to get the toxins out of my brain." Dozens of people validated his experience and suggested homeopathic remedies, essential oils, various snake oil potions sold online through anti-vaxx sites, and "drinking Fiji Water" which will apparently flush all the heavy metals out of your system. 

The total lack of self-awareness on the part of the crazies that THEY are the reason states are eliminating religious and philosophical exemptions is amazing. The nutcases have totally drowned out the reasonable voices asking for things like more research and flexibility in scheduling. It's like the biggest PR "own goal" ever, and they are too delusional to even see it because their belief system is a closed loop: research by actual scientists and advice from actual doctors can't be trusted, because they're all part of the vast conspiracy by the government and vaccine manufacturers to inject us with poison so we'll be dependent on medications for the rest of our lives. If you just avoid vaccines, doctors, and western medicine, you'll never get sick! 

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1 hour ago, Farrar said:

I'm so sick of my anti-vax friends trying to play it like they're a beleaguered minority. As an online community, they're a bunch of hateful trolls with a scientifically untenable position.

There was another article with this exact gist that I used to link to anti-vax folks whenever they tried to play that - we're so discriminated against and hated on and it's so unFAIR! Nice to have a new one.

Ali Stuckey is a conservative Christian with a semi-popular podcast as far as her niche goes. She recently did an episode with Sears (anti-vax sympathetic) and then did another episode with Paul Offit (very pro-vax) and she said she said the the anti-vaxxers were absolutely unhinged in their feedback to her about just having Offit on her show. Like a bunch of one star reviews, hate mail, etc. She said she didn't get anything near as nasty from pro-vaxers when she had Sears on.

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59 minutes ago, Corraleno said:

I googled some of the anti-vaxx sites referred to in the article, and it's hard to believe most of those posts aren't written by Onion staff. Every single illness/injury/condition that can occur in childhood except a broken limb is attributed to vaccine injury, from autism, ADHD, and developmental disabilities to asthma, epilepsy, cancer, reflux, bacterial infections, minor rashes, and the common cold. SIDS is fake diagnosis invented by the CDC to cover up vaccine deaths. One guy said he had a "recovered memory" from when he was vaccinated as a toddler and he could "immediately feel the toxins traveling into my brain" and now he realizes that his ADHD and other life-long mental health issues were caused by vaccines and he wants to know "how to get the toxins out of my brain." Dozens of people validated his experience and suggested homeopathic remedies, essential oils, various snake oil potions sold online through anti-vaxx sites, and "drinking Fiji Water" which will apparently flush all the heavy metals out of your system. 

The total lack of self-awareness on the part of the crazies that THEY are the reason states are eliminating religious and philosophical exemptions is amazing. The nutcases have totally drowned out the reasonable voices asking for things like more research and flexibility in scheduling. It's like the biggest PR "own goal" ever, and they are too delusional to even see it because their belief system is a closed loop: research by actual scientists and advice from actual doctors can't be trusted, because they're all part of the vast conspiracy by the government and vaccine manufacturers to inject us with poison so we'll be dependent on medications for the rest of our lives. If you just avoid vaccines, doctors, and western medicine, you'll never get sick! 

Yep, things were sooooo much better before anyone understood germ theory, or antibiotics or hygiene or any of that. 🙄Those people in underdeveloped countries (or increasingly in homeless populations) dropping over from typhoid, leprosy, cholera, meningitis and diphtheria are really living the dream.  I try not to say I hate people, but sometimes, after reading things like that I have a really difficult time having sympathetic and compassionate thoughts toward people. I'll put it that way. 

And Fiji Water?!?! Apparently The Wonderful Company has a plant in the anti-vaxxers. 

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13 hours ago, JoJosMom said:

 

Word.

I have issues with our vaccine schedule and the reluctance of some physicians to tailor the schedule to the needs of the individual child (or even to investigate whether individual needs exist and/or what they are.) Now, however, if one wishes to discuss vaccines AT ALL, one is treated like a flat earth, tin foil wearing, maniacal, conspiracy theorist weirdo. Grr.

Yup;. Having worked in veterinary medicine and studied vaccination and immunology for my degree I sometimes have questions/concernes about a particular thing and immediately people think I'm going to ask for homeopathy and charcoal instead of vaccines or something.I have to explain that I'm not anti science, it is because of my science background that I have these concerns!  But there is a difference in wanting to know the likelihood of side effects between say, separate MMR and Varicella vaccines and the combination one, and thinking thatmeasels is a bioweapon developed as a hoax to make money. 

And how do people believe this stuff?!?!?! The new one I see is that, "doctors don't even understand this stuff because they don't  study vaccines in medical school". Um, WHAT? Are you SERIOUSLY trying to tell me that you think immunology isn't covered in medical school???? But random person with a website with bad font choices - they have all the expertise???

 

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And yeah - correlation vs causation is not understood by the masses. People were complaining about mosquito spray because it , obviously kills all the pollinators because she found a single dead dragonfly once after someone had sprayed it. Um,  they are not immortal, and die all the freaking time, so you have no way of knowing what caused that dragonfly's death. Another said that the mosquito truck had come by two weeks ago, and now she doesn't hear any cicadas in her yard, so obviously the spraying killed them (a week later). Except, cicada season is over, we normally don't hear them now! No spraying at my house and I don't hear them either. 

You can have valid concerns about these things, there is no reason to reach for ridiculous things!

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34 minutes ago, Ktgrok said:

Yup;. Having worked in veterinary medicine and studied vaccination and immunology for my degree I sometimes have questions/concernes about a particular thing and immediately people think I'm going to ask for homeopathy and charcoal instead of vaccines or something.I have to explain that I'm not anti science, it is because of my science background that I have these concerns!  But there is a difference in wanting to know the likelihood of side effects between say, separate MMR and Varicella vaccines and the combination one, and thinking thatmeasels is a bioweapon developed as a hoax to make money. 

And how do people believe this stuff?!?!?! The new one I see is that, "doctors don't even understand this stuff because they don't  study vaccines in medical school". Um, WHAT? Are you SERIOUSLY trying to tell me that you think immunology isn't covered in medical school???? But random person with a website with bad font choices - they have all the expertise???

 

 

Well, come on now. They do have a point. Were you an EDUCATED consumer, you'd be asking for essential oils. Duh.

 

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what's really ironic - the British researcher whose (bad) study started the whole anti-vax movement, was trying to market his own vaccine.

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2 hours ago, Ktgrok said:

Yup;. Having worked in veterinary medicine and studied vaccination and immunology for my degree I sometimes have questions/concernes about a particular thing and immediately people think I'm going to ask for homeopathy and charcoal instead of vaccines or something.I have to explain that I'm not anti science, it is because of my science background that I have these concerns!  But there is a difference in wanting to know the likelihood of side effects between say, separate MMR and Varicella vaccines and the combination one, and thinking thatmeasels is a bioweapon developed as a hoax to make money. 

And how do people believe this stuff?!?!?! The new one I see is that, "doctors don't even understand this stuff because they don't  study vaccines in medical school". Um, WHAT? Are you SERIOUSLY trying to tell me that you think immunology isn't covered in medical school???? But random person with a website with bad font choices - they have all the expertise???

 

you really have to wonder.  I was recently on a forum, where someone thought teslas used uranium as fuel.  no one could convince him otherwise.

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One of my old classmates has two sons.  Her ex got one of them vaccinated (the older one because he was approaching school age).  

She flipped and said it was causing his allergies.  Turned out, his allergies were *the bee pollen* she was having him eat.  A lot of people can’t eat pollen.  

Edited by LucyStoner
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2 hours ago, gardenmom5 said:

you really have to wonder.  I was recently on a forum, where someone thought teslas used uranium as fuel.  no one could convince him otherwise.

You should've told him it was actually plutonium and a flux capacitor. 

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11 minutes ago, Æthelthryth the Texan said:

You should've told him it was actually plutonium and a flux capacitor. 

I was just going to post something similar! 

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4 hours ago, Ktgrok said:

And yeah - correlation vs causation is not understood by the masses. People were complaining about mosquito spray because it , obviously kills all the pollinators because she found a single dead dragonfly once after someone had sprayed it. Um,  they are not immortal, and die all the freaking time, so you have no way of knowing what caused that dragonfly's death. Another said that the mosquito truck had come by two weeks ago, and now she doesn't hear any cicadas in her yard, so obviously the spraying killed them (a week later). Except, cicada season is over, we normally don't hear them now! No spraying at my house and I don't hear them either. 

You can have valid concerns about these things, there is no reason to reach for ridiculous things!

Oh and the people about the insecticides, I shouldn't even get started on them......I would really love for them to go live in a malarial or dengue pandemic area, where they get to take quinine with Gin every day (makes it more tolerable!)  for six months and then let me know how they feel about some spraying. Oh and then see that the after affects of malaria infection are with you for a lifetime.

It is really pathetic to me that we have so much to be grateful for with the advances we have here, and yet some people just want to piss and moan and complain about it, when if they went to another country and actually saw what happens when we don't have all of these horrible technologies, that life can actually be a little rough. And those people have more serious dealings in life about just earning enough money to feed their family, much less the luxury of spending hours on the internet finding things to complain about in life, and to need to buy a Mindfulness App or some such bullshit to make then take five minutes of their day to not feel sorry for themselves before they jump in their reliable car, after grabbing a filtered cup of water in their reusable Yeti cup to drive to their Yoga class. I'm not saying that everything is perfect with medicine and preventatives, but it's a heck of a lot better to be dealing with than sitting in a country in Africa or South America watching women who feed their family for 6 months on what that Yet cup cost and just hoping their child doesn't contract polio. People seriously need to get out and see the world off of a small edited screen. 

Edited by Æthelthryth the Texan
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What I hate is when I get lumped into the anti-vaxxers because we do an as-needed/ delayed vax schedule because we have had multiple anaphylactic reactions to multiple vaccines in our immediate family. I didn't choose to be an anti-vaxxer. I was told by multiple doctors (not crunchy doctors that I specifically hunted down so that they would agree with me) that herd immunity may be our family's best choice since it was obvious our immune systems have some sort of issue with something in the vaccines that most people do not have. It drives me nuts that each time I have a encounter with a new doctor or nurse and the subject of vaccines inevitably comes up, 9 times out of 10 they assume I'm a radical anti-vaxxer that they need to "fix". I'm not going to give myself or my children vaccines just to prove to them that we have anaphylactic reactions that are noted over and over again in the charts if they would take the time to look. Sigh.

Sorry for the tangent. Just wanted to throw out there that not everyone who refuses or delays vaccines is a radical anti-vaxxers. Some of us are just trying to toe the line between immunity and other health problems in order to survive. It really sucks when people on both sides of the issue give us flack for things that we never asked for to happen to us. Feels like we just can't win sometimes.

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12 minutes ago, sweet2ndchance said:

What I hate is when I get lumped into the anti-vaxxers because we do an as-needed/ delayed vax schedule because we have had multiple anaphylactic reactions to multiple vaccines in our immediate family. I didn't choose to be an anti-vaxxer. I was told by multiple doctors (not crunchy doctors that I specifically hunted down so that they would agree with me) that herd immunity may be our family's best choice since it was obvious our immune systems have some sort of issue with something in the vaccines that most people do not have. It drives me nuts that each time I have a encounter with a new doctor or nurse and the subject of vaccines inevitably comes up, 9 times out of 10 they assume I'm a radical anti-vaxxer that they need to "fix". I'm not going to give myself or my children vaccines just to prove to them that we have anaphylactic reactions that are noted over and over again in the charts if they would take the time to look. Sigh.

Sorry for the tangent. Just wanted to throw out there that not everyone who refuses or delays vaccines is a radical anti-vaxxers. Some of us are just trying to toe the line between immunity and other health problems in order to survive. It really sucks when people on both sides of the issue give us flack for things that we never asked for to happen to us. Feels like we just can't win sometimes.

Unfortunately you're the type who gets dumped on because of the rabid anti-vaxxers who don't actually have a medical reason for refusing. So, people who have legitimate reasons for refusing or for delayed schedules get looked down on. Not to mention it adds to the lack of herd immunity for people who either can't get vaccinated or need to wait.

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1 hour ago, sweet2ndchance said:

What I hate is when I get lumped into the anti-vaxxers because we do an as-needed/ delayed vax schedule because we have had multiple anaphylactic reactions to multiple vaccines in our immediate family. I didn't choose to be an anti-vaxxer. I was told by multiple doctors (not crunchy doctors that I specifically hunted down so that they would agree with me) that herd immunity may be our family's best choice since it was obvious our immune systems have some sort of issue with something in the vaccines that most people do not have. It drives me nuts that each time I have a encounter with a new doctor or nurse and the subject of vaccines inevitably comes up, 9 times out of 10 they assume I'm a radical anti-vaxxer that they need to "fix". I'm not going to give myself or my children vaccines just to prove to them that we have anaphylactic reactions that are noted over and over again in the charts if they would take the time to look. Sigh.

Sorry for the tangent. Just wanted to throw out there that not everyone who refuses or delays vaccines is a radical anti-vaxxers. Some of us are just trying to toe the line between immunity and other health problems in order to survive. It really sucks when people on both sides of the issue give us flack for things that we never asked for to happen to us. Feels like we just can't win sometimes.

I feel most sorry for you people like you.  You are one of the few that actually do have real medical issues with vaccines, but you're lumped with radical anti-vaxxers who don't actually have issues at all. It must be immensely frustrating.

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19 hours ago, Corraleno said:

I googled some of the anti-vaxx sites referred to in the article, and it's hard to believe most of those posts aren't written by Onion staff. Every single illness/injury/condition that can occur in childhood except a broken limb is attributed to vaccine injury, from autism, ADHD, and developmental disabilities to asthma, epilepsy, cancer, reflux, bacterial infections, minor rashes, and the common cold. SIDS is fake diagnosis invented by the CDC to cover up vaccine deaths. One guy said he had a "recovered memory" from when he was vaccinated as a toddler and he could "immediately feel the toxins traveling into my brain" and now he realizes that his ADHD and other life-long mental health issues were caused by vaccines and he wants to know "how to get the toxins out of my brain." Dozens of people validated his experience and suggested homeopathic remedies, essential oils, various snake oil potions sold online through anti-vaxx sites, and "drinking Fiji Water" which will apparently flush all the heavy metals out of your system. 

The total lack of self-awareness on the part of the crazies that THEY are the reason states are eliminating religious and philosophical exemptions is amazing. The nutcases have totally drowned out the reasonable voices asking for things like more research and flexibility in scheduling. It's like the biggest PR "own goal" ever, and they are too delusional to even see it because their belief system is a closed loop: research by actual scientists and advice from actual doctors can't be trusted, because they're all part of the vast conspiracy by the government and vaccine manufacturers to inject us with poison so we'll be dependent on medications for the rest of our lives. If you just avoid vaccines, doctors, and western medicine, you'll never get sick! 

Good golly. 

I had to take a break from a FB friend because of her incessant Onion-y posts about vaccines, “alternative” cancer treatment, and even significant voo-doo about the health of her dog. I could not deal, especially with the cancer BS. 

She believes her kid and even her dog suffers from vaccine damage when it is manifestly obvious her child is on the autism spectrum. Eventually, I said to myself, “Ok. Whatever. Believe what you want to believe.” But I had to stop seeing her posts, especially the cancer bogus nonsense drivel that can cause people to DIE. 

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2 hours ago, sweet2ndchance said:

What I hate is when I get lumped into the anti-vaxxers because we do an as-needed/ delayed vax schedule because we have had multiple anaphylactic reactions to multiple vaccines in our immediate family. I didn't choose to be an anti-vaxxer. I was told by multiple doctors (not crunchy doctors that I specifically hunted down so that they would agree with me) that herd immunity may be our family's best choice since it was obvious our immune systems have some sort of issue with something in the vaccines that most people do not have. It drives me nuts that each time I have a encounter with a new doctor or nurse and the subject of vaccines inevitably comes up, 9 times out of 10 they assume I'm a radical anti-vaxxer that they need to "fix". I'm not going to give myself or my children vaccines just to prove to them that we have anaphylactic reactions that are noted over and over again in the charts if they would take the time to look. Sigh.

Sorry for the tangent. Just wanted to throw out there that not everyone who refuses or delays vaccines is a radical anti-vaxxers. Some of us are just trying to toe the line between immunity and other health problems in order to survive. It really sucks when people on both sides of the issue give us flack for things that we never asked for to happen to us. Feels like we just can't win sometimes.

For fwiw, I wouldn't call you an anti-vaxxer at all. Or Jojo's Mom or any of you guys who are going through delays, reactions or anything else. To me, anti-vaxxers are the outspoken people with an explicitly political agenda with the end goal of suing pharmaceutical companies en masse, spreading misinformation with the end goal of shutting down public health vaccine programs in hopes that no one vaccinates. They think there will be some return to a golden age of disease free living, if we could only shut down the pharmaceutical companies (Ime many of them probably think the same thing about cancer). That is what anti-vaxxers are to me. I know I say it so much y'all get sick of hearing it, but I did work in public health-  and there is a difference between a person making a personal informed choice for their family with open discussion with medical authorities versus packs or groups who vociferously go out and use one study, or single incidence to vilify an entire branch of science. And there is a difference between a medical authority versus someone who spent 2 hours, or 20 hours on Google. Google does not a medical or science degree make. If we cede that there's no difference, and that all you need to learn about medicine or science you can find on the internet with a few key strokes,  then the scientific future of this place is in deep shit. 

Admittedly, it did not help that those who should have been defending this type of thing within the medical community initially folded like a cheap suit when the Wakefield study caught traction and the fact that that study got published at all is shameful. That review board should have all been up for licensure review. It was shameful. But these true Anti-Vaxxer political groups- like the one throwing menstrual blood on CA legislatures- those people LITERALLY and metaphorically have blood on their hands for what they have done, as do their "Celebrity" spokespersons, some of whose key accomplishment was posing nude for men's magazines yet they somehow came out as authorities on the most complex of scientific matters. 

Sorry. End rant. 

Edited by Æthelthryth the Texan
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20 hours ago, gardenmom5 said:

This is very disturbing.  and in other news - I'm on an autistic women's group, and someone has been having hissies all day because she posted an (in bad taste) cartoon about "leveling up" after having a vaccine - and it was removed because a lot of people complained.   

why do these people do this?  it's deranged.

How can that be in bad taste? You get a vaccine, you then have the added power of being dramatically more resistant to a disease. That's not in bad taste. It's a basic metaphor between life and video games. There must have been more to this.

Edited by Farrar
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5 minutes ago, Farrar said:

How can that be in bad taste? You get a vaccine, you then have the added power of being dramatically more resistant to a disease. That's not in bad taste. It's a basic metaphor between life and video games. There must have been more to this.

I believe the point of the meme is that the vaccine will "level up" the autism.

ETA: I don't want to link to the meme itself, but it says "When you're already autistic but get a vaccine anyway" and then there's a blurry/crazy-looking face with the words "LEVEL UP."

 

Edited by Corraleno
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3 minutes ago, Farrar said:

How can that be in bad taste? You get a vaccine, you then have the added power of being dramatically more resistant to a disease. That's not in bad taste. It's a basic metaphor between life and video games. There must have been more to this.

I wondered the same thing and found this one.  https://images.app.goo.gl/rrfA4acrcJP1Z94eA

 

Just now, Corraleno said:

 

I believe the point of the meme is that the vaccine will "level up" the autism.

 

If it was the above meme, then it appears that the vaccine is making the sensory affects of autism go crazy.  

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Ah. That is just... odd and inflammatory. That makes more sense. I saw a literal drawing once where it was a little character doing irl things that made her "level up" and getting a vaccine was one of them. So I was thinking of something along those lines.

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3 hours ago, sweet2ndchance said:

What I hate is when I get lumped into the anti-vaxxers because we do an as-needed/ delayed vax schedule because we have had multiple anaphylactic reactions to multiple vaccines in our immediate family. I didn't choose to be an anti-vaxxer. I was told by multiple doctors (not crunchy doctors that I specifically hunted down so that they would agree with me) that herd immunity may be our family's best choice since it was obvious our immune systems have some sort of issue with something in the vaccines that most people do not have. It drives me nuts that each time I have a encounter with a new doctor or nurse and the subject of vaccines inevitably comes up, 9 times out of 10 they assume I'm a radical anti-vaxxer that they need to "fix". I'm not going to give myself or my children vaccines just to prove to them that we have anaphylactic reactions that are noted over and over again in the charts if they would take the time to look. Sigh.

Sorry for the tangent. Just wanted to throw out there that not everyone who refuses or delays vaccines is a radical anti-vaxxers. Some of us are just trying to toe the line between immunity and other health problems in order to survive. It really sucks when people on both sides of the issue give us flack for things that we never asked for to happen to us. Feels like we just can't win sometimes.

Your post isn't tangential at all — it's at the very heart of the issue. The nutcases who populate all these anti-vaxx forums and websites, are putting your children's lives at risk with their stupidity. 

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6 hours ago, Farrar said:

How can that be in bad taste? You get a vaccine, you then have the added power of being dramatically more resistant to a disease. That's not in bad taste. It's a basic metaphor between life and video games. There must have been more to this.

you misunderstand what the cartoon  - posted on an autism website - was saying.  leveling up was referring to "leveling up" on the autism spectrum.

 

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to those saying the antivax sites sound like something that should be on the onion. . . . . imagine how hard it must be to be a writer for the onion when people are this warped!   truth is stranger than anything they can come up with!  what's a satire writer to do???

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10 hours ago, Æthelthryth the Texan said:

You should've told him it was actually plutonium and a flux capacitor. 

 

10 hours ago, brehon said:

I was just going to post something similar! 

Pity I'm not thinking that fast. 

dudeling has been quite the distraction, and drain on my sanity.  this too shall pass.....

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8 hours ago, Æthelthryth the Texan said:

For fwiw, I wouldn't call you an anti-vaxxer at all. Or Jojo's Mom or any of you guys who are going through delays, reactions or anything else. To me, anti-vaxxers are the outspoken people with an explicitly political agenda with the end goal of suing pharmaceutical companies en masse, spreading misinformation with the end goal of shutting down public health vaccine programs in hopes that no one vaccinates. They think there will be some return to a golden age of disease free living, if we could only shut down the pharmaceutical companies (Ime many of them probably think the same thing about cancer). That is what anti-vaxxers are to me. I know I say it so much y'all get sick of hearing it, but I did work in public health-  and there is a difference between a person making a personal informed choice for their family with open discussion with medical authorities versus packs or groups who vociferously go out and use one study, or single incidence to vilify an entire branch of science. And there is a difference between a medical authority versus someone who spent 2 hours, or 20 hours on Google. Google does not a medical or science degree make. If we cede that there's no difference, and that all you need to learn about medicine or science you can find on the internet with a few key strokes,  then the scientific future of this place is in deep shit. 

Admittedly, it did not help that those who should have been defending this type of thing within the medical community initially folded like a cheap suit when the Wakefield study caught traction and the fact that that study got published at all is shameful. That review board should have all been up for licensure review. It was shameful. But these true Anti-Vaxxer political groups- like the one throwing menstrual blood on CA legislatures- those people LITERALLY and metaphorically have blood on their hands for what they have done, as do their "Celebrity" spokespersons, some of whose key accomplishment was posing nude for men's magazines yet they somehow came out as authorities on the most complex of scientific matters. 

Sorry. End rant. 

I'm glad you see that but just last month we had to take ds6 to the emergency room and we were asked if his DTaP was up to date and of course we had to say no, it wasn't because he has never received one. The nurse asked why he had not had one and I told her we have a family history of anaphylactic reactions but due to the nature of ds's injury I was fine with him receiving a DTaP and the immunoglobulin if he needed it. She told me that "vaccine reactions don't run in families". If I had not been so focused on ds and his injury I might have asked her "well what would you call it when my sister and I have both broken out in hives within minutes of receiving a vaccine and so have 2 of my kids. One of my kids also had to be hospitalized for anaphylaxis not once but two separate times after receiving a vaccine? When you've watched my child struggling to survive a routine vaccine and have had to bear the words 'if she survives...' then you can have an opinion on whether or not vaccine reactions run in my family."

I just ignored her comment like I do a lot of the comments I receive when people find out we don't vaccinate except as needed or very delayed. It is extremely frustrating and irritating though when even trained medical staff make broad assumptions and act on them without a second thought. Ds did receive the DTaP and immunoglobulin in the ER that day (not in the same ER that nurse was in though, we were transferred from the local hospital to the children's hospital) and he didn't have any anaphlaxsis symptoms so we got lucky on that.

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18 hours ago, JoJosMom said:

 

Well, come on now. They do have a point. Were you an EDUCATED consumer, you'd be asking for essential oils. Duh.

 

 

Essential oils are last year.  CBD oil is the new snake oil in town. 

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11 hours ago, Quill said:

She believes her kid and even her dog suffers from vaccine damage when it is manifestly obvious her child is on the autism spectrum. Eventually, I said to myself, “Ok. Whatever. Believe what you want to believe.” But I had to stop seeing her posts, especially the cancer bogus nonsense drivel that can cause people to DIE. 

 

I actually know 2 people that died because they decided to use "natural cures" for autoimmune hepatitis and cancer. In one case, the person stopped their meds, used juice cleanses and essential oils.  They went into liver failure rapidly and died.  The other person took about 18 months before they died of cancer.  They did not pursue chemo, surgery, or radiation, but instead chose essential oils, veganism, organic foods, and coffee enemas.  These were both young people in their 30s.  The first person had only been married 18 months.  The second person left 2 young kids behind to grow up without their mother. 

 

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2 hours ago, MissLemon said:

 

I actually know 2 people that died because they decided to use "natural cures" for autoimmune hepatitis and cancer. In one case, the person stopped their meds, used juice cleanses and essential oils.  They went into liver failure rapidly and died.  The other person took about 18 months before they died of cancer.  They did not pursue chemo, surgery, or radiation, but instead chose essential oils, veganism, organic foods, and coffee enemas.  These were both young people in their 30s.  The first person had only been married 18 months.  The second person left 2 young kids behind to grow up without their mother. 

 

This breaks my heart. There are a couple of “natural cancer treatment” sites where the guru-person actively tells people to refuse chemo. And when people DIE, they distance themselves and expunge evidence that that person ever existed. (See Chris Beat Cancer - yes, I’m naming names! It makes me mad what he’s doing!) 

There’s another one...I think it’s call the BP Protocol or something (should be the BS Protocol) that talks about the “profit motive” of cancer treatment. But their BS treatment costs tens of thousands of dollars, which must be paid OOP. So why would someone not think, “hmmm. Looks like *they* have a profit motive...” 

I dont know...when I was fighting cancer, I had one goal: survival. Sure, question the doctor if you arent comfortable, ask to see the studies to ease your mind, but at the end of the day, I want to live and whatever my oncology team recommends as my course of treatment is acceptable to me. 

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9 hours ago, gardenmom5 said:

to those saying the antivax sites sound like something that should be on the onion. . . . . imagine how hard it must be to be a writer for the onion when people are this warped!   truth is stranger than anything they can come up with!  what's a satire writer to do???

I went looking to see what The Onion did have to say--seems they put up vaccine related articles quite frequently.

This one was my favorite https://www.theonion.com/pharmaceutical-industry-reeling-as-more-moms-making-vac-1819576496

Snip:

"When interviewed, many mothers described quality time spent gathered around the kitchen table, with the whole family helping to grind recombinant proteins with mortars and pestles while a supervising adult helps purify the mixture through chromatography and ultrafiltration. Others reportedly do prep work ahead of time on Sundays so that during the week they can simply come home from work, stir in any necessary adjuvants or stabilizers, and have an inoculation ready to go."

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5 hours ago, MissLemon said:

 

I actually know 2 people that died because they decided to use "natural cures" for autoimmune hepatitis and cancer. In one case, the person stopped their meds, used juice cleanses and essential oils.  They went into liver failure rapidly and died.  The other person took about 18 months before they died of cancer.  They did not pursue chemo, surgery, or radiation, but instead chose essential oils, veganism, organic foods, and coffee enemas.  These were both young people in their 30s.  The first person had only been married 18 months.  The second person left 2 young kids behind to grow up without their mother. 

 

This happened to a second cousin of mine, she didn't want the surgery that was being recommended for breast cancer and opted for sometime treatment in Mexico instead; she did eventually resort to standard treatment but by then it was too late.

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16 minutes ago, maize said:

This happened to a second cousin of mine, she didn't want the surgery that was being recommended for breast cancer and opted for sometime treatment in Mexico instead; she did eventually resort to standard treatment but by then it was too late.

Such a horrible waste. 

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10 hours ago, gardenmom5 said:

to those saying the antivax sites sound like something that should be on the onion. . . . . imagine how hard it must be to be a writer for the onion when people are this warped!   truth is stranger than anything they can come up with!  what's a satire writer to do???

I saw a meme not long ago that said:

BREAKING: The Onion on the verge of collapse after not being able to make up sh#t that is more idiotic than current reality. 

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9 hours ago, sweet2ndchance said:

I'm glad you see that but just last month we had to take ds6 to the emergency room and we were asked if his DTaP was up to date and of course we had to say no, it wasn't because he has never received one. The nurse asked why he had not had one and I told her we have a family history of anaphylactic reactions but due to the nature of ds's injury I was fine with him receiving a DTaP and the immunoglobulin if he needed it. She told me that "vaccine reactions don't run in families". If I had not been so focused on ds and his injury I might have asked her "well what would you call it when my sister and I have both broken out in hives within minutes of receiving a vaccine and so have 2 of my kids. One of my kids also had to be hospitalized for anaphylaxis not once but two separate times after receiving a vaccine? When you've watched my child struggling to survive a routine vaccine and have had to bear the words 'if she survives...' then you can have an opinion on whether or not vaccine reactions run in my family."

I just ignored her comment like I do a lot of the comments I receive when people find out we don't vaccinate except as needed or very delayed. It is extremely frustrating and irritating though when even trained medical staff make broad assumptions and act on them without a second thought. Ds did receive the DTaP and immunoglobulin in the ER that day (not in the same ER that nurse was in though, we were transferred from the local hospital to the children's hospital) and he didn't have any anaphlaxsis symptoms so we got lucky on that.

This may irritate any nurses out there reading this, but frankly I have found ER nurses to exceed in one thing, which is trauma, and otherwise they seem to be the most cynical and incompassionate of the bunch for most things. They want to get you in and get you out or admitted. In all fairness, they see the worst of people coming in, the violent psych cases,  people trying to lie and manipulate the situation to get meds or healthcare and demanding things for pain  for a drug habit or faking heart attacked for a note to get out of work (I kid you not- one hospital I worked they had codes for fakers they would Announce to let other staff know a faker was being dealt with - instead of like Code Blue it was something else. So they tend to be the absolutely most skeptical group of the bunch. 
 

Also, I have found a lot of them not have any understanding of basic genomics whatsoever which is understandable. It’s not really necessary- but I have heard nurse a mammogram facility tell a patient they had a Cancer gene because the patient disclosed their mother had had breast cancer. No genetic screening mind you. And the nurse told a patient this. I was apoplectic and reported her. So to be fair- I wouldn’t consider a nurse to be one helping anyone to decide anything. It’s not their job and they aren’t typically trained for it iykwim. 
 

Regardless, I’m sorry you went through that and your nurse was ill informed. 

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7 hours ago, MissLemon said:

 

I actually know 2 people that died because they decided to use "natural cures" for autoimmune hepatitis and cancer. In one case, the person stopped their meds, used juice cleanses and essential oils.  They went into liver failure rapidly and died.  The other person took about 18 months before they died of cancer.  They did not pursue chemo, surgery, or radiation, but instead chose essential oils, veganism, organic foods, and coffee enemas.  These were both young people in their 30s.  The first person had only been married 18 months.  The second person left 2 young kids behind to grow up without their mother. 

 

When natural cures don't cure cancer, you're stupid and idiotic for not trusting mainstream medicine. 

When chemo kills you faster faster than the cancer would have, well, we don't acknowledge that.

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16 minutes ago, DesertBlossom said:

When natural cures don't cure cancer, you're stupid and idiotic for not trusting mainstream medicine. 

When chemo kills you faster faster than the cancer would have, well, we don't acknowledge that.

What I'm about to say is oncology specific. Not vaccines (for the most part). You are talking prevention with vaccines (which can include preventing later cancers) versus reactive treatment in most cases as far as oncology until technology advances to that point to become predictive......

I do think this- the bolded above-  should be discussed more openly. Oncology is an emerging science to this day, and as better understanding of oncogenomics develops and personalized therapy becomes a more developed field, there will hopefully be more advancement down this line. But, it's not as if the medical community, at least in the field of Oncology, that this isn't understood that some really bad mistakes were make and isn't discussed in journals, conferences, and all over the place. And is a given that the field never has been, nor ever will be perfect. There is risk on either side. And it's always hindsight afterward. At the time people think they are doing the best. They are trying to do the best they can do at that time, with the given information. But any patient in a legitimate setting is going to be given the KNOWN risks for any treatment up front. Sometimes it takes time to get a true grasp of the risks though, and that takes getting into bigger populations beyond the drug trials. The American public is fickle. If you have something that looks promising they want it NOW. But they want it without any risks. You can't have both. Either you study it for 20 years in a limited population, thus withholding what could be a promising treatment, and then you are a villain, or you fast track it, because it's promising and you get it out to the public in hopes of saving lives, but there are inevitably going to be adverse events (read:bad side effects) and then you get the crap sued out of you for not predicting this would happen. Pharma companies are not always angels, but they very often get put in vicarious positions on some of these things due to said fickleness.  If you want the newest thing and to be the early adaptor,  so to speak, you are going to shoulder some risk. 

I think part of the problem is US society has two widely disparate views of illness and medicine on the extremes. One group as a whole holds medicine up as done deal. In that, to them it has peaked. We are at the pinnacle. We are a step away from "curing" cancer.  (which is the craziest phrase that fundraisers ever coined). By this group's view you would be stupid not to go all in. There has never been a better time to get cancer and blah blah blah. That is the one extreme.

On the other end of the spectrum, you have people who think if we only returned to an earlier time, a purer time, these things like cancer would not exist. If we didn't have pesticides, and gasoline, and houses with asbestos and x-rays, and cars and and and, then none of these things would exist. They think and yearn for the Polly Perfect Past we just need to get back to- where eveyone would have lived forever had it not been for wild animals killing us or lack of food I guess. The problem is there never was a pure time. There was never a time where there were not mutations and cancer (theological beginnings aside).  

Likewise, we aren't at a pinnacle of scientific knowledge either. There is still a lot more unknown that known in medicine for many things. The truth lies mostly in the middle of these two groups imo. Science of any sort, but especially medical science, isn't perfect, it never has been, and it never will be. There is still a lot of art to the science. There are too many variables and too many complexities, so the best we can do is make an educated choices using the science we have NOW, which are all built off of the science we had THEN. Now with some things, there is more surety than others (vaccines across large populations will help more than they harm by a long shot, antibiotics can cure many bacterial infections and also have some other side benefits, etc.) But if you throw in cancer of a system,  you are really throwing in variable to a level of excess. The term "cancer" itself I think has become misleading in that people think it's one thing, with one cause, maybe two, and that only varies by which system it happens to hit. They also like to think that some external thing is what caused the cancer rather than something just malfunctioned in their body or they were born with a mutation. Because then who do you blame? Blame is an interesting factor in all of this as well. We are a society of blame, after all, at least speaking of America and that goes for more than medicine. 

But just because chemo can cause damage in cancers where the genetics and the mutation aren't matched to the drug,  a development which is still in it's infancy-- and yes they are finding out they made some horrible mistakes in the past and it has killed people and it has given people horrible quality of life in some cases if they did live--  they didn't have the technology or the knowledge to see these things at the time. And they still don't a lot of the times. Or the money. It took time.  They are still working on it. But we do have, in this country, about the best of the best of where it is, which is why you have the people who can afford it flying here from Canada and the UK and the Middle East to avail themselves of our world class, cutting edge treatment, because if you want a shot at going after an aggressive type of cancer, we are largely your best shot here in the US. We are trying things here other countries can't or won't due to regulations or $$$$$$- they either won't try it as it's experimental and hasn't passed their stricter review boards, or their healthcare systems simply won't pay for the newer technology yet because they don't have the financial structure within the healthcare system to do it en masse. So yeah, it's rationed here as well according to your insurance and your welath to pay, but it's no different in a single payer system either. They simply can't afford to make some of these treatments available to all until the costs come down and that takes a lot of time. But even with all that- no, we aren't perfect.  We can't save everyone. And yes, treatments go wrong. People still end up dying. Not everyone is saved, and yep, some treatments look like they cut time short (although everything is an estimate because who REALLY knows when anyone is going to die? They don't.  It's guesstimating using what the latest statistics provide.)

But conversely, all of that also doesn't also mean that alternative medicine hasn't also made some equally bad missteps, nor that it isn't extremely easy to turn it into huckster "science" where the ambitious entrepreneur takes advantage of the scared and ailing by peddling pseudoscience that is actually known NOT to work. One bad outcome doesn't equate the other, especially when you are looking at intent. At the end of it, people need to be frank about their reasons. It is fine to turn down modern treatment if you have been given the information and decided that the risk outweighs the benefit and decide you would prefer to keep your quality of life for a shorter time rather than take a lesser quality for a longer time. But it's completely different when some shady promise is given for a product with zero scientific review process behind it, or further more a product completely debunked as fraud, and that fraud is presented as the true hope and cure for a person who is looking for a miracle with no side effect (like the alkaline water they used to sell in Houston for $50 a gallon to cancer patients). That's just fraud.

It comes down to what weight you put into studies and into scientific methods in most cases. And it is, at the end of it all, an odds game. People want surety and you're never going to get surety with people. I don't care what the field is. People are on the patient end and people on the treatment end and there are too many things you can't control for there. It doesn't work. We aren't assembly line robots. 

I don't ever give advice here to people with cancer on what they should do treatment wise. I just don't. I have my background and I have my opinions, and I just think it's really poor form to try and come in and act as if anyone "knows" what the best course is for a life altering choice. It is a gamble. And it needs to be treated with humility on the provider end AND the patient end. We are not gods. (That's not a popular sentiment on either side, fwiw, and there is a reason I retired- that being one of them.) You can present options, and move on. But as far as cancer, I don't pass judgement on people for what they do or don't when it comes to treatment.  And I don't look back at past generations and look at how they tried to deal with surgeries or infections with glowering judgement that they were idiots. It all builds off of each other. And it's going to keep building off each other. And it's sad that people die, but everyone dies- whether they embrace modern science 100% or alternative medicine 100%----the bigger question is of when. But it is all still a gamble. You can have a freak reaction to something in a treatment and be that 1% who had the adverse event. No one knows. Or you could get another ten years, or you could get one, go into remission and get hit by a bus. . No one can really step in and say "well had they done XYZ" they would have lived, and that's one thing we do need to stop saying. No one can say that. 

My point it, both sides need to step up and have some humility and start speaking in terms of statistics, and replicable studies, not sureties. And they need to use the studies as a talking point, not as a mic drop. One study is one study. It's interesting. It's something worth looking at. But until it can be replicated multiple times,  one study does not a principle make. And if you don't have any replicable studies around a treatment and it's all anecdotal, well then they need to own up to that and look into why. And I think within the greater medical community, it does work that way. However, for the rest of the population, these points are boiled down to a 30 second hysterical news blurb and then a bunch of online papers and bloggers looking for clicks. Social media hasn't helped. 

I don't know the solution. You can't really boil down most scientific studies and ask that the average person being able to wade through them and their sources. I mean, most people don't even understand the scientific method in adulthood, much less have a decent wrap around on statistics.  In a perfect world, what you need to be able to do is trust your medical professional, but that is lacking now too for many reasons-  and before anyone jumps on the healthcare issue in the US- note this is not a US specific problem-we are actually on the lower end of this new surge of distrust for things medical and even countries in Europe with gov't paid healthcare are having even bigger surges of distrust of practitioners. So it's gets more complex. People are angry, and I think some people think they are "sticking it to the medical establishment" which is something I haven't wrapped my head around by a long shot, but I do think it's there. Maybe medical establishment stands in for government, and people have an easier time taking it out there?   Idk. Above my paygrade for sure. But it's a worldwide trend, at least as far as what I would consider first world countries. The rates of vaccinations are dropping and the "alternative treatment' marking is booming. 

And now I've rambled enough without enough coffee. So forgive me for the excessive length, but your post struck a chord. 

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1 hour ago, DesertBlossom said:

When natural cures don't cure cancer, you're stupid and idiotic for not trusting mainstream medicine. 

When chemo kills you faster faster than the cancer would have, well, we don't acknowledge that.

There’s no way to know if chemo kills someone faster than the cancer would have. All they have is reams of survivors who are alive because of chemo. 

What bothers me is the suspicion that doctors and scientists are heartlessly colluding to treat people with something that is expensive and might not work, so they can get money. There are well-established protocols for which chemotherapy to use, how much, length of treatment, and so on. This is not true for “natural cures.” 

 

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1 hour ago, DesertBlossom said:

When natural cures don't cure cancer, you're stupid and idiotic for not trusting mainstream medicine. 

When chemo kills you faster faster than the cancer would have, well, we don't acknowledge that.

Don't we though? I mean, isn't that what five year survival stats with and without various treatments are exactly about? Saying how long people live with and without the drug? 

Also, we are addressing over treatment of cancer specifically - changing mammogram protocols, recommending that some prostate cancer not be treated, working on identifying which breast cancer tumors may never become anything,  trying to avoid chemo where possible, etc etc. 

Where are the five year survival stats on say, coffee enemas or lemon essential oil?

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12 minutes ago, Quill said:

There’s no way to know if chemo kills someone faster than the cancer would have. All they have is reams of survivors who are alive because of chemo. 

What bothers me is the suspicion that doctors and scientists are heartlessly colluding to treat people with something that is expensive and might not work, so they can get money. There are well-established protocols for which chemotherapy to use, how much, length of treatment, and so on. This is not true for “natural cures.” 

 

Historically speaking (recent history) with the introduction of oncogenomics this is new longer true. They can now look back at how/with what drug they treated certain tumor types with in the past and see that these actually compounded and worsened the cancer at worst, or were completely ineffective at best. To where essentially the chemo was not doing what it was supposed to hit and was 100% ineffective. And chemo absolutely has side effects that can permanantly alter quality of life. 

This is why Personalized Medicine is the new trend in oncology. They just didn't have the resources then, and to a large extent now, they still don't at many hospitals. It is a lot better than it was 10-15 years ago, but they can absolutely now say in many cases in the last 50 years that some situations were worsened by the chemo. They were ignorant. It wasn't out of malice. It was simply that the knowledge wasn't there. They weren't able to run the genomics. And they are still building the databases and collecting the information on the match of the drug to the tumor type. 

And you know I am not an alternative medicine quack. But that is the truth and it might as well be stated. No, they might not have know then, and they still might not know now on everything, but they did make some massive missteps if you look at it in the light of the information is NOW available on the genetic level. But we still don't have all of the information. 

Edited by Æthelthryth the Texan
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7 minutes ago, Æthelthryth the Texan said:

Historically speaking (recent history) with the introduction of oncogenomics this is new longer true. They can now look back at how/with what drug they treated certain tumor types with in the past and see that these actually compounded and worsened the cancer at worst, or were completely ineffective at best. To where essentially the chemo was not doing what it was supposed to hit and was 100% ineffective. And chemo absolutely has side effects that can permanantly alter quality of life. 

This is why Personalized Medicine is the new trend in oncology. They just didn't have the resources then, and to a large extent now, they still don't at many hospitals. It is a lot better than it was 10-15 years ago, but they can absolutely now say in many cases in the last 50 years that some situations were worsened by the chemo. They were ignorant. It wasn't out of malice. It was simply that the knowledge wasn't there. They weren't able to run the genomics. And they are still building the databases and collecting the information on the match of the drug to the tumor type. 

And you know I am not an alternative medicine quack. But that is the truth and it might as well be stated. No, they might not have know then, and they still might not know now on everything, but they did make some massive missteps if you look at it in the light of the information is NOW available on the genetic level. But we still don't have all of the information. 

Yes, I agree that oncogenomics have really changed things tremendously. I benefited myself from the new June 2018 release of (I think 10 year?) study on Oncotype and chemo or non-chemo outcomes. I am enormously grateful to have benefited from those studies. Ten years ago, it may have been suggested chemo was my best insurance where now, they were able to pinpoint my tumor type enough to say, no; I’m unlikely to benefit from chemo. Surgery and radiation, plus maintenance Rx (Tamoxifen). 

What I meant in my post is something you said in your longer post: there’s no fool-proof way to know exactly what outcome someone will have. You can’t go back and say, for example, my FIL might have lived for years more had he not had chemo and withered away to 90-some pounds of skin and bone. You can’t say, well, if he had just taken shark cartilage supplements or he had seen a Reiki healer (or whatever), he might even be alive today. 

I agree with what you said: we will all die of *something*. None of us wants it to be soon and none of us wants to suffer awful pain or for a long time. But all we can really do is trust the scientific research and to understand that nothing is guaranteed. 

My high school friend and classmate who recently died of leukemia - she and her husband were so incredibly admirable throughout her battle. I didn’t completely grasp that until the funeral, where I came to realize that from the beginning, from her diagnosis last October, they knew her prognosis was not good. Even being treated at one of the best research centers in the world, her odds were not good. But this was not what they presented to the world. She and her husband presented the picture of optimism and tremendous personal strength throughout. I admired her and her husband tremendously. It makes me think quite a lot about how we deal with a cancer diagnosis, especially when the outlook is difficult. 

I think sometimes people with a lot of competency sometimes suffer with the illusion that their competency will protect them from bad outcomes. People can be harmed by this thinking whether they are rah-rah science or rah-rah alternative medicine. I think, for myself personally, suffering a tragedy brought me face-to-face with this truth and it was one of the most crippling things about suffering a senseless tragedy. I couldn’t prevent it. All my control and research and belief and whatever was not enough to protect me from a random bad outcome. I learned this lesson, but it was so, so painful. It is hard to come to a full realization that none of us can protect ourselves or the ones we love by just choosing properly, whatever the issue. 

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It’s sort of like now with the 23andme Et al, and those sorts of things. It started as one thing- family tees (if you don’t take a more dark view of the companies’ true intent of gathering this info like I do, LOL). But then it morphed. Now supposedly they can explain everything about you! What you should eat, what cancers you will be more predisposed to, and on and on. It’s marketing genius in a health obsessed country. But they are very much overselling it. 

In a super simplistic way of putting it- your data is only as good as your references ranges. So when you have really small range sets (which these do, because even if you are talking millions of users, look at that percentage compared to the totality of humanity) they’re going to get things wrong. So I sit and watch people putting so much stock in these things right now as far as the consumer genetics tests and while they’re interesting I guess to a point, 100 years from now people are going to look back and laugh “can you believe they though XYZ?!?” Over some of these test results.

Medicine obviously started this- as the price to run a genome came down we could look at more. It used to take $1 million and weeks. Then it was 100,000, then 10,000 etc. So clearly they can do a lot more research now than they could in 2000. Or 2010. 

Right now genomics is the Holy Grail. But the thing de jour always is for that generation. And it always changes. It takes that bit, but then it goes on. And maybe one of our kids will figure out the next piece. But it’s all a puzzle and we don’t even have the picture is how I fell sometimes. 

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3 minutes ago, Quill said:

Yes, I agree that oncogenomics have really changed things tremendously. I benefited myself from the new June 2018 release of (I think 10 year?) study on Oncotype and chemo or non-chemo outcomes. I am enormously grateful to have benefited from those studies. Ten years ago, it may have been suggested chemo was my best insurance where now, they were able to pinpoint my tumor type enough to say, no; I’m unlikely to benefit from chemo. Surgery and radiation, plus maintenance Rx (Tamoxifen). 

What I meant in my post is something you said in your longer post: there’s no fool-proof way to know exactly what outcome someone will have. You can’t go back and say, for example, my FIL might have lived for years more had he not had chemo and withered away to 90-some pounds of skin and bone. You can’t say, well, if he had just taken shark cartilage supplements or he had seen a Reiki healer (or whatever), he might even be alive today. 

I agree with what you said: we will all die of *something*. None of us wants it to be soon and none of us wants to suffer awful pain or for a long time. But all we can really do is trust the scientific research and to understand that nothing is guaranteed. 

My high school friend and classmate who recently died of leukemia - she and her husband were so incredibly admirable throughout her battle. I didn’t completely grasp that until the funeral, where I came to realize that from the beginning, from her diagnosis last October, they knew her prognosis was not good. Even being treated at one of the best research centers in the world, her odds were not good. But this was not what they presented to the world. She and her husband presented the picture of optimism and tremendous personal strength throughout. I admired her and her husband tremendously. It makes me think quite a lot about how we deal with a cancer diagnosis, especially when the outlook is difficult. 

I think sometimes people with a lot of competency sometimes suffer with the illusion that their competency will protect them from bad outcomes. People can be harmed by this thinking whether they are rah-rah science or rah-rah alternative medicine. I think, for myself personally, suffering a tragedy brought me face-to-face with this truth and it was one of the most crippling things about suffering a senseless tragedy. I couldn’t prevent it. All my control and research and belief and whatever was not enough to protect me from a random bad outcome. I learned this lesson, but it was so, so painful. It is hard to come to a full realization that none of us can protect ourselves or the ones we love by just choosing properly, whatever the issue. 

100x your last paragraph. and also hugs. 
 

I love your point about competency. People confuse competency for power. We all do, or at least a lot of us. Humility comes seeing and being part of the failures if we are lucky. It sucks. But it’s how I think we get more wisdom. Lord knows when I was fresh out of school and even well into my career I did a lot of scoffing at those who didn’t chose the latest and greatest. To me they weren’t choosing life. They were the ignorant ones. And now I am deeply, deeply sorry for that. I seriously repent of my internal condescension and judgement on people. Failure and failing people in medicine is a bitch. But it’s also probably the best teacher of humility there is short of going through it yourself. 

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