Re: Wednesday Eve

1

Messily's description of that article as long, interesting, and stressful, with a happy ending, is impressively accurate. Exactly so! I was interested, I was stressed, I read the whole thing, and it did not destroy me. Thanks!

Snark to me, when I sent him the link before he'd seen it here: "Does this have a happy ending? because I'm going to have to close the tab right now if it doesn't have a happy ending."


Posted by: redfoxtailshrub | Link to this comment | 03-15-16 7:29 PM
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2

Ok, I convinced myself of the coin flip thing.


Posted by: heebie-geebie | Link to this comment | 03-15-16 7:44 PM
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3

How does that possibly work? Pls explain to a per Khan Academy 6th grader.


Posted by: R Grothendick Tigre | Link to this comment | 03-15-16 7:55 PM
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4

Coin flip thing easy. Don't think about how you get the sequence, but how you fail to get it.


Posted by: Asteele | Link to this comment | 03-15-16 7:57 PM
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5

That's a rather close to home story. Youngest kid had Kawasaki. Oldest has OCD, taking Prozac and doing CBT, we considered PANDAS because he did get bad rather quickly in the second half of last year although not as quickly as in this story.
I have no idea why their azothromycin was so expensive, it's generic. Which part of the story makes you say the pharma industry is evil?


Posted by: SP | Link to this comment | 03-15-16 8:00 PM
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6

If H-T fails, it fails H-H-* still leaves 50% chance to succeed on flip 3.
H-H fails H-T-*. No chance to succeed on 3rd flip.


Posted by: Asteele | Link to this comment | 03-15-16 8:01 PM
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7

Each time you fail to get HH you're starting over because a T is useless for you, but when you fail to get HT because the T was an H you've already completed half the sequence for your next attempt?


Posted by: SP | Link to this comment | 03-15-16 8:03 PM
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8

Same thing but I used more words to say it!


Posted by: SP | Link to this comment | 03-15-16 8:04 PM
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9

4 is exactly how I got there. For HT to fail, you can only have a string of tails followed by a string of heads. (Or just a string of heads). For HH to fail, you can think of it as a string of tails, and then single heads can be inserted between any adjacent pair of tails. There are many more ways to do that.

This is a crappy explanation.


Posted by: heebie-geebie | Link to this comment | 03-15-16 8:06 PM
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SP, if you don't mind, did they rule out PANDAS? I've considered asking about that for one of mine who seems to be a strep carrier and also has some behavioral problems that I supposed could be related. Okay, maybe I've talked myself into asking and seeing if we can figure it out on that front rather than just assuming she's responding to legitimately sucky things in life.


Posted by: Thorn | Link to this comment | 03-15-16 8:14 PM
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(Obviously I hadn't read the article yet when I commented. But yeah, I've been hesitant to bring it up because of the crackpot factor mentioned in the article.)


Posted by: Thorn | Link to this comment | 03-15-16 8:26 PM
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12

Ok 6 makes total sense. But no way I woulld have gotten that without help.


Posted by: R Grothendick Tigre | Link to this comment | 03-15-16 8:27 PM
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13

9 also works- once you get H, you're going to succeed as soon as you get a T and continuous heads is less likely than the mix of H and T you can get when shooting for HH but failing. See, we solved it multiple ways- much mastery! So core!


Posted by: SP | Link to this comment | 03-15-16 8:32 PM
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10- No, although he never had any kind of acute infection like in the article. Like in the article he always had OCD like behaviors- when he was 2 he always had to line up all his cars in a row at bedtime, he's always kept his room abnormally clean for a kid. It just got worse at the end of last school year, he had a really bad teacher and then had anxiety issues when school restarted even though his teachers this year are good and went downhill from there.
Just recently he had a persistent ear infection, after he was already being treated for OCD, and had a double course of azithro (which is why I'm aware of what it costs- not much more than our prescription copay). But that doesn't seem to have done anything aside from the ear infection.


Posted by: SP | Link to this comment | 03-15-16 8:39 PM
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15

Drugstores can still randomly charge through the nose for generic drugs. I imagine because so many people don't question the prices.


Posted by: Minivet | Link to this comment | 03-15-16 9:02 PM
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||
Oh, Anita Brookner just died. Very sad.
I'm pretty sure there was NM to her work when she was alive.
|>


Posted by: jms | Link to this comment | 03-15-16 9:02 PM
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12 sums up a lot of my bootcamp experience. I have no aptitude for algorithms. Let's make a career out of it!


Posted by: ogged | Link to this comment | 03-15-16 9:09 PM
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18

An autoimmune disease! This is one of the types of disease I think will be diagnosed exponentially more easily soon. Most autoimmune diseases are due to one type of antibody that most people don't have because it attacks our own cells. If we could use mass spectrometry or some high-throughput technique to find the offending clone of antibody, it would provide an explanation. I envision it working like allergy testing. Although that produces a heck of a lot of false positives right now.

In my new job I was hoping to learn more about this. Maybe in my next job.


Posted by: Cryptic ned | Link to this comment | 03-15-16 9:09 PM
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The article was very scary. It made me think of Susannah Calahan's "Brain On Fire," in which the author recounts her own very rapid descent into mental illness, which turned out to be caused by autoimmune encephalitis. Another terrifying read.


Posted by: jms | Link to this comment | 03-15-16 9:14 PM
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Yeah, I don't think you want to look happily forward to anything working toooo much like allergy testing does at present.


Posted by: redfoxtailshrub | Link to this comment | 03-15-16 9:17 PM
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21

On OP.2, our neighbor, who's an incredibly talented HS senior (has twice been to the national musical theater awards in NYC), developed some sort of leg/hip injury* late last fall, and the medical response has been abysmal, from telling her she's basically making it up to utterly misdiagnosing it. She spent months in constant pain and is only now recovering. Meanwhile, she was going to auditions for college in this excruciating pain; it would be inspiring if it weren't so enraging.

*I'm not sure I ever understood exactly what it was


Posted by: JRoth | Link to this comment | 03-16-16 5:05 AM
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22

I wonder if PANDAS would get more respect by the medical community if it didn't have such a cute name.


Posted by: Cyrus | Link to this comment | 03-16-16 7:06 AM
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23

You know, it's a slightly peculiar article for the point it's making, given that as far as I can tell, no one treating her kid ever did diagnose her with PANDAS. The NIMH researchers accepted her into a trial on the basis of the mother's history and the kid's records, but not a single doctor who was in a room with the kid ever agreed with the PANDAS diagnosis.

This doesn't mean she didn't have PANDAS, but it makes it a weird poster case for "Everyone thought I was being nutty, and then my diagnosis of the kid's ailment was proved to be correct as soon as I could get a doctor to listen."


Posted by: LizardBreath | Link to this comment | 03-16-16 7:20 AM
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There's apparently so ICD or DSM code for PANDAS so maybe they couldn't. Maybe I should read the article.


Posted by: Moby Hick | Link to this comment | 03-16-16 7:30 AM
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25

Nicole Cliffe wrote a fantastic tweet storm inspired by that article.

I've long since come to the conclusion that half the challenge of getting adequate health care in this day and age is simply realizing which specialist you should seek the advice of.


Posted by: (gensym) | Link to this comment | 03-16-16 7:42 AM
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I wonder if PANDAS would get more respect by the medical community if it didn't have such a cute name.

No. The medical community doesn't respect.


Posted by: | Link to this comment | 03-16-16 7:45 AM
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27

Whoops my computer doesn't respect me either apparently.


Posted by: E. Messily | Link to this comment | 03-16-16 7:49 AM
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The "autoimmune" part seemed strange to me. If antibiotics are the treatment, why isn't that just an infection? And if it is autoimmune, why not steroids or methotrexate or the other drugs commonly used to treat autoimmune disorders?


Posted by: Moby Hick | Link to this comment | 03-16-16 7:52 AM
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I'd believe PANDAS is a real thing, but it's not well understood how to treat it. The 'antibiotics forever' thing is the treatment people think should work for post-treatment-Lyme syndrome too.


Posted by: LizardBreath | Link to this comment | 03-16-16 8:01 AM
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30

And they've done studies on that and found that long term antibiotic treatment does look better than placebo and that is carries significant risk (especially since they apparently use IV drugs there).


Posted by: Moby Hick | Link to this comment | 03-16-16 8:07 AM
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23: I agree! I kept waiting for the point where they met with the doctor who confirmed their self-diagnosis, and that never happened. And she never did the trial, so... placebo? time passing and an anxious kid calming down? body resolving the post-infection syndrome?


Posted by: Cala | Link to this comment | 03-16-16 8:15 AM
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32

Anyway, the blockquoted bit in the OP about trying to get sick in a commonplace way is only partially true. There are plenty of definitive diagnoses where the treatment are generally agreed up and not very effective.


Posted by: Moby Hick | Link to this comment | 03-16-16 8:30 AM
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33

28- you keep saying your going to read the article but since that's addressed in the article I guess you still haven't?


Posted by: SP | Link to this comment | 03-16-16 8:31 AM
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34

Just because a doctor didn't say it doesn't mean it wasn't the right diagnosis. (I'm not saying it was, particularly, but neither did the author, really.) But the fact that they didn't do the trial doesn't turn antibiotics into a placebo effect.


Posted by: E. Messily | Link to this comment | 03-16-16 8:31 AM
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35

33: I skimmed it but didn't see that covered.


Posted by: Moby Hick | Link to this comment | 03-16-16 8:34 AM
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36

34: Oh, definitely. More a commentary on the shape of the story than anything else. I just meant that had she done the trial, they'd be more likely to know whether it was PANDAS.


Posted by: Cala | Link to this comment | 03-16-16 8:39 AM
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OP.2 was riveting. There's a commonality among narratives about various conditions that were aggressively misdiagnosed as non-biological with aggressive defenses for those misdiagnoses. Ulcers were due to stress: nope, bacteria. Autism spectrum due to "cold mothers"; nope, developmental/genetic. "Chronic Lyme Disease" a fantasy; still open but looking more like it's real.

PANDAS still debatable, I think, but given more credence. Of course there are also the ones like Morgellan's, where the balance of the evidence is in favor of it being psychological.

Doctors just hate, hate, hate to admit they don't know the answer, and being in possession of a hammer, they know what to do with the nail they see.


Posted by: DaveLMA | Link to this comment | 03-16-16 8:40 AM
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38

OP 1.1 on prime numbers feels in my ignorant and uninformed opinion like an obviously trivial statistical artifact, like Super Bowl wins being strongly correlated to presidential elections (for some range of time, not sure if that corollation still holds), etc.


Posted by: urple | Link to this comment | 03-16-16 8:45 AM
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39

30

Long-term antibiotic treatment is indeed dangerous.

The newest and to me most plausible theory about "Chronic Lyme" is that some Lyme Disease spirochetes encapsulate themselves when attacked by antibiotics. When the threat is over they eventually emerge. So the idea is to do an aggressive course of antibiotics, then wait (months, I think) and do another course with a different antibiotic (or maybe the same one?). If you have the waits, long-term treatment won't necessarily work. Repeat over time if symptoms recur.

I know several people who have Chronic Lyme. It's real. (None of them are using the long-term continual antibiotic "cure" though.)


Posted by: DaveLMA | Link to this comment | 03-16-16 8:47 AM
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40
I really wish med school didn't turn people into such arrogant, formulaic jackasses (present company's family members excluded).

What a great article! One thing that set it apart from others of this genre was that the author was very sympathetic to the formulaic jackasses -- possibly because she is a science writer.

I'm not sure it's med school that creates jackasses. The general run of humanity is also jackasses. (I do not exempt myself.)


Posted by: politicalfootball | Link to this comment | 03-16-16 8:50 AM
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41

I know several people who have Chronic Lyme. It's real.

I suspect "chronic Lyme" is residual nervous system damage from the initial Lyme infection, rather than a latent recurring infection.


Posted by: apostropher | Link to this comment | 03-16-16 9:15 AM
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42

Either way, I still hate ticks.


Posted by: Moby Hick | Link to this comment | 03-16-16 9:27 AM
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I'm not sure it's med school that creates jackasses.

I don't think it creates them, exactly. But I do think there is a self-selection issue, where on one hand people who are good at creative problem-solving tend not to wind up in med school, and if they do, they don't finish because they are miserable. And on the other hand the med school environment is extremely reinforcing of ideas about rote memorization equalling intelligence, and medical degrees equalling intelligence, and patients without medical degrees equalling lesser beings deserving of scorn and pity.

With the result being that the type and concentration of jackasses is different in the doctor population than in the general public.


Posted by: E. Messily | Link to this comment | 03-16-16 9:37 AM
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44

Similar to politicians, but with a few key differences.


Posted by: E. Messily | Link to this comment | 03-16-16 9:38 AM
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45

Doctors just hate, hate, hate to admit they don't know the answer, and being in possession of a hammer, they know what to do with the nail they see.

Patients also hate for the doctor to admit they don't know the answer.


Posted by: Cryptic ned | Link to this comment | 03-16-16 9:40 AM
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46

"There's a 55% chance you have testicular cancer in each of your testicles so we recommend flipping a coin and removing the left ball if heads and the right ball if tails."


Posted by: Moby Hick | Link to this comment | 03-16-16 9:47 AM
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47

38 continued: I mean, is there even a possibility that this is in some way a meaningful result? What would a possible meaning be? (The except in the OP about prime numbers having "preferences" is self-evident nonsense.)


Posted by: urple | Link to this comment | 03-16-16 10:06 AM
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41 seems right to me. We know Lyme disease can cause damage that doesn't go away after the disease itself does.

But I think like anything else semi-medical that is mostly diagnosed by, let's say, unorthodox physicians based on relatively little there's going to be a chunk of the people claiming to have it who actually have whatever generic 'feels awful all the time' problem seems to exist as a kind of constant, and latch on to whatever the prevailing possibility ends up being. We've managed to carve off a lot of the people in that category by identifying some of the actual disorders behind that kind of stuff*, which is pretty great progress. But it's still a pretty common feature of the human condition, and the source of a lot of the fringe-ier medical practices and now outdated diagnoses (neurasthenia! chlorosis!) for a long time now.

*(Chronic Fatigue Syndrome; Depression with strong somatic symptoms; Fibromyalgia; PTSD; etc.)


Posted by: MHPH | Link to this comment | 03-16-16 10:07 AM
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47: God knows I'm the last person who should be opining about this, but isn't that how a lot of things work? Apparent weird pattern leads to a conjecture about how it might be explained, which either does or doesn't lead to a proof? This would be stage 1, where something has been noticed but not yet reduced to a form where trying to prove it makes sense.


Posted by: LizardBreath | Link to this comment | 03-16-16 10:24 AM
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38, 47: I haven't actually read the link, but if we correlated a billion Super Bowls to presidential elections, I'd start to wonder ...


Posted by: politicalfootball | Link to this comment | 03-16-16 10:27 AM
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51

I am curious if the pattern is the same in other number base systems (hex/octal)


Posted by: yoyo | Link to this comment | 03-16-16 10:40 AM
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Apparent weird pattern leads to a conjecture about how it might be explained

Ok, but that was my question: is there any early conjecture about how this might be explained as anything other than a meaningless statistical artifact?

Again, the OP sort of offers one, based on prime numbers have "preferences" and "predilections", which unless I'm misunderstanding the point is just silly. Is there a non-silly possibility?


Posted by: urple | Link to this comment | 03-16-16 10:42 AM
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OP shows the danger of jumping to conclusions.

1. Primes: the linked article doesn't have enough information, but do we know that primes ending in "1" are (near) uniformly distributed in following primes ending in "3", "7" & "9". Because, unless they are, it is not evident that the preference is due to the primes ending in "9" and not the primes ending in "1". That is, it may well be that primes ending in "1" have a preference for following primes ending in "9" rather than that primes ending in "9" prefer to be followed by primes ending in "1".

2. I really wish med school didn't turn people into such arrogant, formulaic jackasses. From my experience with pre-med students back in the day, they were arrorgant formulaic jackasses long before starting med-school. More a selection problem, perhaps even a self-selection problem.


Posted by: marcel proust | Link to this comment | 03-16-16 10:45 AM
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I bet there is a very strong pattern for the last digit of prime numbers in base-2 number systems.


Posted by: Moby Hick | Link to this comment | 03-16-16 10:45 AM
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I am curious if the pattern is the same in other number base systems (hex/octal)
Yes, there is a corresponding pattern in other number bases.


Posted by: Turgid Jacobian | Link to this comment | 03-16-16 10:52 AM
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41

Possibly. The encapsulated or "dormant" spirochetes theory has at least one non-woo paper about it: Researchers' discovery may explain difficulty in treating Lyme disease (Link is to a news release from Northeastern, the paper is behind the usual academic paywall.)

48

Don't forget the marthambles!


Posted by: DaveLMA | Link to this comment | 03-16-16 11:10 AM
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52.2: Here's a discussion of the non-silly explanation.


Posted by: lambchop | Link to this comment | 03-16-16 1:00 PM
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I think that qualifies as non-silly. Go Terry!

TIL that there are such things as sexy primes.


Posted by: F | Link to this comment | 03-16-16 1:13 PM
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OMG, the link in 57 is one of the best things I've seen in a while. It's number theory devolved into pure numerology.


Posted by: urple | Link to this comment | 03-16-16 1:19 PM
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I must have missed the pentagrams. Though 5 is prime...


Posted by: F | Link to this comment | 03-16-16 2:08 PM
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FUCK EVERYTHING. GIRL X IS STILL WHEEL-CHAIR BOUND AND THEY DON'T KNOW WHAT'S WRONG! GIRL Y GETS A NOROVURUS ON HER SCHOOL TRIP TO MALATSIA AND THEY HAD NO ORS TO GIVE THEM, FUCKERS, NOW 1 WEEK LATER GIRL Y IS NOT ALL THE WAY BETTER AND GIRL X AND I ARE NOW BARFING. SHE WAS DOING GOOD ON PT AND THIS IS KNOCKUNG HER DOWN. panic attacks for her, too, because WHY NOT?!? also narnian docs hate not knowing this worse than anyone, and they don't want to admit this or hear about our family's history of poorly-understood auto-immune problems. at least they're giving her legit pain meds and benzos finally. ALSO FUCK EVERYTHING. I CAN'T EVEN GO HOME BECAUSE GIRL X CAN'T FLY.


Posted by: alameida | Link to this comment | 03-18-16 7:32 AM
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How horrible. I'm so sorry to hear that.


Posted by: Moby Hick | Link to this comment | 03-18-16 8:01 AM
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Very sucks, al. Pumping wishes into the ether.


Posted by: Minivet | Link to this comment | 03-18-16 8:28 AM
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Whaaaa!!!! Best wishes to all of you!


Posted by: chris y | Link to this comment | 03-18-16 8:42 AM
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That's terrible. Best wishes; that's quite a set of things to deal with.


Posted by: NickS | Link to this comment | 03-18-16 9:30 AM
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