
Mysterious illness that paralyzes healthy kids prompts plea from CDC - smacktoward
https://arstechnica.com/science/2019/07/mysterious-illness-that-paralyses-healthy-kids-prompts-plea-from-cdc/
======
anongraddebt
Medical 'anomalies', while sad and terrible in some cases, can also be
fascinating.

I was seven in the summer of '94 and woke up one day with a completely
immobile left leg. My sister came into the bedroom to relay a message from mom
that if I didn't stop playing games and get ready for school, then I'd be in
trouble. However, I simply couldn't move my left leg.

The rest of the week I spent at home. Whenever I needed to walk somewhere, I'd
just hop on my right leg, and drag my left leg along with me.

That week I saw a number of doctors and specialists. Had the battery of tests
and diagnostics that are de rigeur for anything where the medical community
has no clue what is going on.

Within roughly seven days from the onset of this temporary paralysis, my leg
began functioning again and did so quite quickly.

~~~
tzs
> Medical 'anomalies', while sad and terrible in some cases, can also be
> fascinating

I developed some kind of lump near the top of one of my butt cheeks. It was
quite a bit denser than the surrounding tissue and it pointed up in a way that
it could have been used as a hook to hang a hat on, if for some reason I was
naked and needed to carry an extra hat around.

My doctor didn't know what it was, and sent me to have a biopsy. The biopsy
showed that it was not cancerous.

It was way too big for my doctor to consider removing, and he sent me to a
surgeon to see if she could remove it in her office. She said it was too big
for that, and it would need to be done in a hospital. She also had no idea
what it was.

Next stop was a dermatologist to see if he had any ideas what it was and wht
to do about it (short of surgery in the hospital). He too had no idea what it
was. He checked with some colleagues at the University of Washington,
describing it to them. They had no idea either, and wanted me to come over to
let them look at it, and also show it to the medical students as an example of
the strange ass (no pun intended) things that the human body sometimes does
that they will encounter as doctors and have no idea what the heck is going
on.

Since it wasn't cancerous, and, aside from dashing any hopes I might have had
of quitting programming to become a nude butt model, didn't cause any problems
I declined and just ignored it.

A few years later, it started shrinking, and a few months later was gone.

One of the doctors told me that this kind of thing--a patient with some weird
thing that the doctor does not recognize--is a lot more common than most
people realize.

~~~
DoreenMichele
I've read things that indicate they actively sweep a lot of weird stuff under
the rug. I read of a case of a young boy diagnosed with cancer who
spontaneously got all better for no apparent reason. Rather than investigate
it, they acted like "must have been misdiagnosed."

When I began getting better when that's not supposed to be possible, my
specialist scheduled me fewer appointments because "he had other patients that
actually needed him." He expressed zero curiosity about how I was improving.

With shitty treatment like that and getting well on my own, when I moved, I
didn't bother to get a new doctor. Internet strangers like to frame that as me
being a nutter who refuses to see a doctor rather than doctors being jerks to
me and me generally having no reason to see one.

~~~
maxander
With respect, your doctor’s response seems entirely reasonable. Spontaneous
remissions, as this sort of thing are called, are known to happen, but the
tools to understand why and how basically don’t exist, or at best are the
purview of serious biomedical laboratories; certainly, your doctor couldn’t
have mounted a serious investigation with the resources in his office.
Meanwhile, the sick always outnumber medical practitioners, and there’s an
essentially unlimited number of people in worse condition than yours who he
could help; of course he would allocate his limited time to where it would do
the most good.

~~~
DoreenMichele
Of course his response was _entirely reasonable._

It also has the net effect of:

A. Making me look crazy in the eyes of the world. Gee thanks.

B. Ensuring that our current mental models for various conditions are
reinforced rather than questioned in a manner that furthers knowledge about
how to actually get well.

Also, I have a genetic disorder. Spontaneous remission doesn't really apply in
my case.

Instead, I've spent more than 18 years actively improving my health -- while
_reasonable people_ call me crazy, treat me like absolute shit, insist I'm
making it up out of a sick need for attention and tell me "extraordinary
claims call for extraordinary proof." which is a polite way of saying "STFU.
You aren't even allowed to talk about your experiences on the internet without
first having irrefutable evidence." It's a de facto social gag order. Good
luck proving anything when it's essentially Verboten to even discuss it.

My comment speaks to an entire system and entire world view that actively
attacks and dismisses anyone whose personal first-hand experience fails to
line up with the medical "party line" so to speak.

We have been calling people "crazy" for questioning current popular medical
views for a long time, a practice that effectively cost Ignaz Semmelweis his
life -- even though he was a physician with studies to support his _cockamamie
theory_ that "mortality rates go down if physicians wash their hands before
seeing patients."

[https://en.m.wikipedia.org/wiki/Ignaz_Semmelweis](https://en.m.wikipedia.org/wiki/Ignaz_Semmelweis)

Germ theory was later accepted and history has proven him right. Too bad, so
sad for him. It doesn't bring him back from the dead.

~~~
krageon
Your experience may be 100% true and it would still not hold a lot of value
for other people to hear about it. Either what you say is true and the odds of
it happening are so small nobody can count on it happening to them, or what
you are saying is not true and they still cannot count on it happening to
them.

It is great that you survived and got the miracle cure that no doubt many
people wish for, but if that story isn't one that helps or can inform other
people why do they need to hear and acknowledge you? Especially given that the
fact that it is medically a miracle makes it impossible to prove means that
anyone else can only take it on faith. For the one miracle that happened to
you, there are millions of people on the internet making huge claims that are
almost definitely wrong. This isn't an environment conducive to good faith.

Then there is the frankly fairly problematic amount of anger that you express
this with. It's perfectly understandable given the rest of the context that
you put forth, but it makes the whole story even less palatable than it
already was.

Your position that the fact that your doctor prioritised people who were
actively dying means that you look crazy to everyone else is one that I can't
follow, I'm afraid.

------
adamvalve
I have a coworker who's son just got this diagnosis. This stuff is scary. They
caught it fast and were able to treat it but he still lost most control of his
left arm. Long road to recovery but it seems some kids aren't as lucky.

~~~
14
I just got news that one of my kids Taekwondo instructors may have this. He
was a healthy 21 year old male. Everyone is feeling devastated as he was so
young and not completely reliant on life support for his breathing. No one
knows if he will recover and it is terrifying. As someone with several kids
this is really worrying.

~~~
Waterluvian
As a parent I've come up with a mechanism to help when things like this worry
me.

I have basically no power to protect against things like this. But I have
tremendous power to protect against far more likely causes of harm like
diabetes and heart disease and obesity.

So any time I'm having a moment of worry about their well being I find an
extra hour to carve out of my day and take them to the park. It's therapeutic
and makes me feel less helpless and feels like I'm gradually equipping them
with the life trait of being an active person.

~~~
burfog
You have a lot of power over this. Simply act as if we live in a world without
vaccines. For most diseases, we do in fact live in that world.

By the way, we've found viruses that cause heart disease and obesity. There
are no vaccines for these. Many viruses also cause cancer, not just the ones
we have vaccines for.

Protecting against this is all about your day-by-day personal choices. Do you
choose the restaurant with reusable metal forks, or the one that provides
plastic ones in individual plastic bags? Do you choose the fruit salad and the
veggie sandwich, or do you choose the applesauce and the hot soup? Do you
touch your chair and then eat pizza with your hands, or do you push the chair
with your foot and then still avoid eating any food that has been touched? Do
you ride a crowded subway or drive your own car? Do you go to a movie theater
or watch something at home?

~~~
krageon
Living your life as if you have crippling germaphobia is not healthy for you
mentally (as the parent) and is also not doing your children any favours.
There is plenty of evidence that having your kids grow up in very sterile
environments will negatively impact their immune system as time goes on, both
in terms of strength and allergies.

------
tzs
Here's a graph showing the clustering mentioned in the article [1].

[1]
[https://en.wikipedia.org/wiki/Acute_flaccid_myelitis#/media/...](https://en.wikipedia.org/wiki/Acute_flaccid_myelitis#/media/File:Paralysie_flasque_aigu%C3%AB_acute_flaccid_myelitis_US_CDC_graph_2018_en.png)

~~~
jMyles
The WikiPedia article currently says "Prevention includes polio vaccination
and avoiding mosquitoes bites."

The source[0] of this says "To prevent infections by AFM-related viruses ,
specialists recommend staying up-to-date with polio vaccines and to minimize
exposure to mosquitoes," but doesn't say who these specialists are or why they
conclude this.

Since the cause is wholly unknown (even though the symptoms and course have
some similarities to polio and one outbreak of the disease coincided with an
outbreak of West Nile), we can't really say whether these will decrease the
likelihood of experiencing this syndrome, increase it, or have no effect.
Right?

0: [https://rarediseases.info.nih.gov/diseases/13142/acute-
flacc...](https://rarediseases.info.nih.gov/diseases/13142/acute-flaccid-
myelitis)

------
Alex3917
I had something very similar to this in September 2006. I still have all my
medical records from the time and a digitized version of my MRI because it was
such a weird thing that no one was ever able to convincingly diagnose. I
checked though and it doesn't look like there is any way to submit it since
I'm not a doctor, and since it was before 2014, heh.

------
nemonemo
Is there any geographical clustering? The article mentioned Colorado GBS
cases, but I could not find any mentioning of AFM one. If this happens mostly
during the hot season and some insect vectors are suspected, I'd expect to see
some concentration around hot and humid areas.

~~~
bayesian_horse
Apparently it's not that simple.

They don't say so in the article, but the trouble with identifying the causal
agent is that the suspect strains have an incidence rate which is multiple
orders of magnitude higher than the number of AFM cases. But as far as I know
those virus species are not routinely tested for or differentiated that far.
It's mostly "just a cold".

I think there are more specific causes for the GBS cases, so that may explain
a local clustering.

------
selimthegrim
Maybe it's like the cluster in India, in Bihar?

[https://thewire.in/health/what-is-encephalitis-whats-
happeni...](https://thewire.in/health/what-is-encephalitis-whats-happening-in-
bihar-heres-all-you-need-to-know)

------
hurrdurr2
So it looks like best guess is some sort of mutated polio virus? Also seems to
cluster from June to December range... I hope they figure out what exactly
this is soon.

~~~
halfarmbandit
Notice, this isn’t just June to Late November, it’s also occurring every 2
years, not every year. This has me wearing tinfoil hats.

~~~
tzs
I'd reach for the insect repellant before the tinfoil hat. Anyone know offhand
an insect with a two year life cycle that has some significant stage that
peaks around September?

~~~
nemonemo
Even if such insect exists, they would have alternating two groups that would
appear like annual, like cicadas.

~~~
dmckeon
Or appear every 13 or 17 years, like some cicadas.
[https://en.wikipedia.org/wiki/Periodical_cicadas#Lifecycle](https://en.wikipedia.org/wiki/Periodical_cicadas#Lifecycle)

~~~
nemonemo
This is a great natural wonder. Thank you.

It also invalidates my logic. Maybe there could be some vector with biannual
periodicity.

------
bluepeter
I've been following this closely. There's no real data on the following:

\- Is this happening in other countries? I cannot find really any established
diagnoses outside of the US (though some countries have CDC-like pages on it).

\- What is the gender breakdown?

\- What is the age breakdown? (mean, median, SD)

\- What is the geo breakdown? (city vs rural, major geo areas)

------
naveen99
My son had this when he was 5. We had a difficult few years. Now mostly
recovered. very scary disease.

------
tau255
Is there any way that propagation of polio related viruses is linked with
reduced immunization rate? Like opening new "natural" reservoir for it to
exploit/mutate in?

~~~
maxerickson
I wonder if it is the other way around, with the elimination of polio making a
disease that has similar impacts on many fewer people more visible.

~~~
tau255
Yes, that's good point. Before polio immunization all similar cases may have
been attributed to polio directly and now that polio cases are filtered every
such case stands out. Did not think about that.

------
wintercarver
Regarding the mysterious biennial periodicity, I dug around for naturally
occurring biennial events that have a synced timing. Didn’t find much, but I
did find this article specifically about biennial periodicity in measles.

“Periodicity, synchronization and persistence in pre-vaccination measles”
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938089/#!po=0....](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938089/#!po=0.769231)

>An analysis of data from more than 350 administrative areas in England and
Wales using wavelets [9] showed that for pre-vaccination measles, (from 1944
to 1966) most locations are indeed synchronized and present outbreaks every 2
years...

------
uptownfunk
Is this related to anti vax ?

~~~
RandomGuyDTB
no

------
Havoc
>CDC asks for help

Welcome. You're now on the set of a Generic Epidemic Horror Movie A

------
mikeytown2
This is a controversial book but worth looking into
[https://www.amazon.com/Moth-Iron-Lung-Biography-
Polio/dp/171...](https://www.amazon.com/Moth-Iron-Lung-Biography-
Polio/dp/1717583679)

~~~
bardworx
Just reading the first review on Amazon, I’m skeptical. They started with
polio and ended with arsenic poisoning.

One (polio) is caused by a virus we have vaccines for. The other (arsenic) is
a poison that was readily available and know in 1800s.

There is also misinformation in the description of the book, stating that
polio just appeared in 1800s but it was around way before and identified in
1789.
[https://en.m.wikipedia.org/wiki/Polio](https://en.m.wikipedia.org/wiki/Polio)

This seems to be some great anti-vaccine propaganda or fear mongering for a
few bucks.

