Jenny Apple

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c.sabatier said:
I wonder if the trial for which Jenny was being considered was placebo-controlled or an open-label trial (where all patients receive the drug).

Placebo-Controlled Trials

Every ALS researcher has been asked the very reasonable question: why use placebos in a trial for a disease as serious as ALS?
www.massgeneral.org www.massgeneral.org
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Cancer patients arent allowed to receive a placebo treatment. They have to be as good or better than standard care treatment. Unless a patient is out of standard of care treatments, they then may be allowed experimental treatment, but never placebo
 
mcl92 said:
I hope everything is ok, but I fear it is not. Call me naive, but I will be shocked if they are using TT’s playbook and are holding out to get greater views. If this turns out they are, I will have to unsubscribe.
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I haven't read the comments after this so l hope lm.not jumping in to early, this is the whole problem of being overly invested in these cancer vloggers, when random strangers are worrying about them Fluffy fox style not directed at you.
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TryingMyBest said:
If anyone has any spare prayers send them to Arizona. It's going to be 118 degrees here this weekend and I'm so worried about the homeless folks, and feral and lost animals.

Many years ago I had to fly to LA every Tuesday for work. On the way home one Tuesday the pilot said it's 121 degrees at the Phoenix Airport and the plane's tires are only rated for 118 so we are just going to circle until the sun goes down and we can land. We were circling for almost an hour. Drove home and found my silly husband on the roof fixing something. He loved the heat.
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Sending a cool breeze your way. Keep hydrated ❤️
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Saydee said:
Come stay at mine. Meant to be summer, but its cool and peeing it down with rain.
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Sounds about right for the UK 🤣
 
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I don't remember the exact wording but didn't they say back a few videos that if this clinical trial didn't work or wasn't appropriate the oncologist said there were still more options?

I think the weekend is actually the best time to post YouTube videos for max views so maybe she will be posting soon.
 
Maybe they are in Oregon but she certainly didn't seem well enough for that trip last time we saw her
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I guess all her subs can quit worrying about her. Also, if she is well enough to go to a farm in Oregon for a multi day vacation she is probably well enough for a clinical trial.

Seems like maybe she just plays up her fragility for the videos.
 

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Saydee said:
As if Kyle doesn't have enough to contend with?
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TryingMyBest said:
Jenny sounds like a 2 at best and is actually more a 3 at this point.

They might just not be filming because they need to mourn her not being able to get more treatment. It's a hard pill to swallow...pun intended.
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I know I sound like a stuck record (for those who remember) but I'm not sure that what Jenny can do and what she does do is necessarily the same thing so I hope she's better than she appears.
lucyricardo said:
Use this thread to discuss anything related to Jenny Apple!
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TryingMyBest said:
Maybe they are in Oregon but she certainly didn't seem well enough for that trip last time we saw her
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I guess all her subs can quit worrying about her. Also, if she is well enough to go to a farm in Oregon for a multi day vacation she is probably well enough for a clinical trial.

Seems like maybe she just plays up her fragility for the videos.
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Surely not?!
 
TryingMyBest said:
Maybe they are in Oregon but she certainly didn't seem well enough for that trip last time we saw her
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I guess all her subs can quit worrying about her. Also, if she is well enough to go to a farm in Oregon for a multi day vacation she is probably well enough for a clinical trial.

Seems like maybe she just plays up her fragility for the videos.
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Ya think? Nah not Jenny she's the "good" one she's the "genuine" one.
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riley123 said:
I can see the OR pictures that were posted 3 hrs ago. They look very happy and relaxed. Their pug went too. If this photo isn't allowed, please let me know and I'll delete it.

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Are those CROCS l see?
 
When are subscribers and viewers going to realize that vloggers, cancer or otherwise, post videos for money or for the chance to make money? As MKLovlif said in her recent video, vloggers wouldn't be spending their time recording, editing, and posting videos if money wasn't a factor. Vloggers are not viewers' friends, are not involved in viewers' lives, and treat viewers as a collective whole. When a vlogger says 'I love you', they mean to say that they love the group collectively for what the group of viewers is enabling : cash flow and sweet comments that the vloggers feed off for a rush of ego-boosting and for the good feeling of well-wishes. The vloggers wouldn't know a real viewer from a 'bot' that sends out canned sweet messages.

Also, one thing I've noticed both from the Tiffanythinks channel and from Jenny Apple's recent absence from posting: The more people ask for updates, the more time vloggers wait before responding. Once again, the situation was that some of Jenny's viewers were worried, while Jenny was apparently doing fairly well on a multi-day trip, as per the photo posted. I've decided I will not watch Jenny Apple again, but just read comments on Tattle because people here write interesting information.
I also think that one reason for her lack of updates is because either she, Kyle, or both of them are reading on Tattle and might not have been pleased with some of the comments.
I wish her well in her journey.
 
c.sabatier said:
When are subscribers and viewers going to realize that vloggers, cancer or otherwise, post videos for money or for the chance to make money? As MKLovlif said in her recent video, vloggers wouldn't be spending their time recording, editing, and posting videos if money wasn't a factor. Vloggers are not viewers' friends, are not involved in viewers' lives, and treat viewers as a collective whole. When a vlogger says 'I love you', they mean to say that they love the group collectively for what the group of viewers is enabling : cash flow and sweet comments that the vloggers feed off for a rush of ego-boosting and for the good feeling of well-wishes. The vloggers wouldn't know a real viewer from a 'bot' that sends out canned sweet messages.

Also, one thing I've noticed both from the Tiffanythinks channel and from Jenny Apple's recent absence from posting: The more people ask for updates, the more time vloggers wait before responding. Once again, the situation was that some of Jenny's viewers were worried, while Jenny was apparently doing fairly well on a multi-day trip, as per the photo posted. I've decided I will not watch Jenny Apple again, but just read comments on Tattle because people here write interesting information.
I also think that one reason for her lack of updates is because either she, Kyle, or both of them are reading on Tattle and might not have been pleased with some of the comments.
I wish her well in her journey.
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Exactly. Unless this was a dying wish to visit Oregon one more time and she went via a medical helicopter her subs better realize she's just playing them along.

I watch a van life dude with 300k subs that admitted on camera that he never reads comments because he just didn't care about them but he sure has lots of sponsored videos and merchandise for sale. Just playing the sheep for fools.
 
@Saydee Just wanted to reiterate what a great analysis that article you provided was in helping me to review a critical evaluation of the strengths and weaknesses (many of which I brought up here in my clumsy terminology) of performance scales.

I was heartened that my concerns have been raised by others in the treatment community.

I do think a more personalised assessment would help identify factors that might take some individuals who score poorly, but may have robust enough health not quantified in the current scales to move them into a probability of efficacious result from therapy or trial if it was permitted for them. Aggregating unfortunately does not tease out other healthful factors for the potential responders who are denied the opportunity. I do understand now that, as a whole, studies have found the scales do reflect responders vs. those who fare poorly from treatment.

I do think, given these are life or death decisions, added research is much needed to ensure they've teased out everyone, and what other factors might lead to a benefit above its toxicity to patients, scoring poorly on the scales but who may actually benefit. Eliciting even more personal details might be helpful in making an even more accurate determination. I wonder if AI could be helpful in identifying individuals contributing factors.

Very interesting area. I'm so glad you mentioned this performance evaluation as I had no idea what was involved in deciding treatment eligibility!

ETA:

TryingMyBest said:
Just playing the sheep for fools.
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I'm not really understanding: why is it playing commenters for fools to not read the comments? Surely people don't expect someone to spend hours reading through all of them, also wading through a lot of bizarre, hostile or critical comments just because people submitted them?

Do people expect that kind of reciprocity?
 
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