
Every Body Goes Haywire - benbreen
https://nplusonemag.com/online-only/online-only/every-body-goes-haywire/
======
mdip
I'm pleased to say that I am a _former_ Migraine sufferer.

I've had the condition since I was 17 years old, when the first one hit. It
was such an intense pain that I begged my mom to take me to the emergency room
-- certain my brain was bleeding since the pain included a number of other
symptoms (blurry vision, dizziness, nausea and the like). They sent me home
with 1000mg of acetaminophen and basically told my mom that I was probably
faking or just had a bad headache. My experience with around two decades of
dealing with this illness was that neither regular folks, nor doctors, take
the condition terribly seriously. People call their headaches "Migraines"
having no idea that there's a difference. There's drugs marketed for Migraine
headaches that, in my experience, did very little and were targeted at people
who get "bad headaches that htey call Migraine". The best description I could
give of how it felt was "like the worst 'brain freeze' you've ever had but
instead of ending after a few seconds, it goes on for a few days". But
everyone seems to have slightly different symptoms and until reading this
article, I wasn't even aware that it was possible to have Migraine _without_
the associated headache (though I had heard about some of the other symptoms
that I hadn't experienced myself).

For me, a typical Migraine was 3-days long, twice a month, with increasing
frequency during the fall and spring months. I'd have the aura most of the
time and the after-effects almost all of the time. I'd been employed, full
time, during the entire time that I lived with Migraine and because of its
frequency, I rarely--if ever--took time off (try explaining to a boss that you
need the day off because you have "a headache"). I'd given a presentation to a
room full of coworkers right in the middle of one -- my eyes watering the
whole time from the pain. Most of the time, though, I'd figure out ways to
function -- sunglasses, staying still, contrast down all the way on the
monitor, fasting for the day with frequent trips to the restroom to vomit air.

If normal people don't take it seriously, doctors seemed to take it even less
seriously. The first question they'd often ask is "did you miss work because
of a headache?" Being too honest, I'd say "no" and they'd stop paying
attention or prescribe an anti-inflammatory. A doctor who took me moderately
seriously prescribed two different triptan-based drugs with the assurance that
"my wife gets these -- when you have an aura, just take one and it'll all go
away." The pain was dulled by a huge amount, but they came with enormous side-
effects. I would experience an intense sort of "elation" shortly after taking
the pill, followed by a depression after the pain was gone (I'm _neither_ of
these things, normally, except for a small bit of listlessness after the
Migraine had subsided). The medical literature indicated mild variants of
these symptoms but this was _anything_ but minor to me. I ended up finding
out, by accident, when mixing this medicine with another medicine that affects
serotonin, that my body lacks a gene required for properly flushing this
medicine out of my system. I was sent to the ER with ~103 degree fever,
incredibly elevated blood pressure (I don't remember the number but I remember
the look on the nurse's face when she took my blood pressure for the third
time with the replaced cuff and got the same numbers), and was treated by
staff who _was sure_ I had taken some recreational drug and was having a bad
reaction (they were shocked when the tox screen came back clean). It was
_probably_ serotonin shock according to a doctor I saw well after this visit,
but the ER staff was convinced I had some sort of psychiatric episode or took
a drug they couldn't screen for. Regardless, they told me to never take a
triptan again.

This incident resulted in me seeing a new doctor who suggested I try a
medicine given -- in the past -- to people with epilepsy (and now commonly
prescribed for bipolar disorder) called Depokote. Ironically, it was _not_
prescribed to handle Migraine, but rather whatever underlying problem caused
my trip to the ER[0]. It was September, a month where I had gotten Migraines
weekly every year since I was 17. After a month of taking the medicine I had
_no_ headaches. I did a quick google search and the usual web sites didn't say
anything about Migraine relief, but a handful of forum posts from people who
take the medication had been taking it to manage Migraine symptoms (a search
of that medicine a few weeks ago yielded results indicating that the medicine
is now prescribed for that purpose). These silly little pills that cost about
a dollar for a month's supply are _magic_ as far as I'm concerned. Generally,
I _hate_ drugs affect my brain, but I've had no side-effects (unless you
consider eliminating Migraine a side-effect).

My apologies for the long comment, but since I know there are others out there
who probably have gone through what I went through, I thought I'd share.

[0] Here's where it gets complicated. The ER couldn't figure out _why_ I was
sick, but a flush of fluids through my system resolved everything. I was
diagnosed as having a psychiatric episode -- something I had _never_ had in
the past, nor since. I was also admitted on a US holiday, so staff wasn't so
great. I was prescribed this medication on the assumption that I might need to
be on a _mood stabiliser_ , which was _absurd_ to me, but _these were doctors_
and I am not, so I listened blindly. I had the genetic test months later after
my children had been given a similar test and theirs had indicated a problem
with triptans and, sure enough, those were my genes.

~~~
dvtv75
My partner suffers from sporadic migraines, sometimes getting a cluster of
them and then sometimes nothing for months. Symptoms include "snow" and
similar odd visual effects, that sound rather similar to what I see when I
apply pressure to my eyeballs.

Last time she had one, she told me that her neck always hurt afterward, and I
remembered reading about a therapy for migraines that involved paralyzing
groups of muscles with Botox, and determining which was the cause through a
process of elimination. Removing the muscle was the cure.

I had her lie with her fingertips pressing in at the most painful points on
her neck, the nerve clusters most likely, and she let the weight of her head
press her the muscles into her fingers for as long as she could tolerate it.
When she felt she could deal with it again, she would repeat the process.

Instead of a migraine that lasted for some time, the primary symptoms (visual
artifacts) were gone in about five or ten minutes, and the follow-up
(headache) symptoms were greatly reduced, she could sleep it off.

Clearly, the causes for her differ from the causes for you, but hopefully this
will help someone.

~~~
mdip
That's an interesting point - I had found that getting a very serious massage
while I had symptoms had helped them. I didn't get them nearly enough to be
able to say "for sure" that it really helped, or if it was just placebo (the
original reason I sought the massage was because of reading that it sometimes
relieves pain, so that thought was already in my head). Chiropractic also
seemed to have an effect but that was so sporadic that I'm convinced it was
placebo.

I tend to believe that massage _could_ help, though, because I could reliably
_create_ the opposite effect. There were certain places on my neck and
shoulders that if I applied sufficient pressure with a single finger, I could
increase the pain and other symptoms to the point of inducing vomiting.

I feel for your partner. It's a miserable thing to deal with that very few
people really understand or take seriously (I couldn't even estimate how many
times someone asked me "Have you tried that Excedrin Migraine? Does it
work?"[0] Nope.) Everyone's symptoms vary slightly. For me, the best thing
that could be done was to leave me alone in a cold-ish dark room.

I didn't get the "snow" effect, but I got an aura -- mine was a wavy
blurriness around the periphery of my vision that seeped slightly into my
direct vision (the "waves" were visible every heart beat but never pierced
into my direct line of sight). Even on my new medication, I still,
occasionally have had a very mild version of the aura show up for a couple of
minutes and then just fizzle out. I'm convinced I'm witnessing myself avoiding
Migraine at that moment, but I don't know enough about how this medicine works
(nobody seems to) to say that for certain.

[0] I would get quite irritable when experiencing symptoms but I don't think I
ever, once, replied sarcastically with "Oh, you mean that medicine that's
advertised on TV just about every commercial break? No, I've been living under
a rock for a few decades and suffering needlessly, apparently." I always
wanted to.

------
cpncrunch
I used to suffer from CFS, and my wife used to get almost weekly migraines.
(We're now both symptom free). In both our cases, chronic stress seemed to be
the cause.

From what I can see (having talked to many other patients and researched it
for the last 16 years), the depression/migraine/CFS/fibromyalgia cluster of
symptoms appears to be the brain's way of telling you to stop doing what
you're doing, i.e. you should remove the stressors. That's not to say that all
migraines are caused by stress, but it does seem that it is likely a
significant factor for many people.

I dislike the notion perpetuated in this article that if your headaches or
fatigue is psychosomatic (due to stress) then you're either "weak", or it's
"all in your head" (i.e. imaginary). I'll admit I probably wouldn't be able to
work in a stressful job in NY with only a few hours sleep a night -- like the
author of this article was trying to do -- without suffering from some kind of
stress-related illness. I don't think that makes me weak...it's simply that my
brain won't let me work in an excessively stressful situation like that if it
doesn't appear to be in my best interests (even if I really want to do it).
The advantage is that my CFS prompted me to quit a boring job and create my
own internet startup, doing something that nobody else in the world is doing
(now I have about 20+ competitors).

~~~
Noseshine
Given that we now think that the brain flushes out waste products during sleep
[0][1] and that lack of sleep is associated with all kinds of real problems
[2][3] (both ideas supporting one another) "psychosomatic" really is something
quite physical.

As an IT guy who has taken hundreds of hours of medical and several
neuroscience courses I can't quite wrap my head around the idea of claiming
something is "mental" or "psychological" and mean it as a closing statement.
And "stress" _is_ physical. If it was just and "idea" or abstract concept you
would not feel anything. It only becomes "stress" when physical things happen
inside of you.

[0] [https://www.nih.gov/news-events/news-releases/brain-may-
flus...](https://www.nih.gov/news-events/news-releases/brain-may-flush-out-
toxins-during-sleep)

[1]
[https://news.ycombinator.com/item?id=12153644](https://news.ycombinator.com/item?id=12153644)

[2] [http://www.npr.org/sections/health-
shots/2016/01/04/46062060...](http://www.npr.org/sections/health-
shots/2016/01/04/460620606/lack-of-deep-sleep-may-set-the-stage-for-
alzheimers)

[3]
[http://healthysleep.med.harvard.edu/healthy/matters/conseque...](http://healthysleep.med.harvard.edu/healthy/matters/consequences/sleep-
and-disease-risk)

~~~
cpncrunch
Firstly, psychosomatic means physical symptoms due to psychological cause, so
if there was no physical thing happening inside the body, it wouldn't be
psychosomatic. (It would just be psychological).

There are many types of stress, e.g. physical (exercise), viral, or
psychological, and they all have a similar effect in the brain (i.e. all of
those stresses activate the HPA axis).

From what I can see, the type of shutdown due to chronic stress that we see in
CFS and similar conditions is likely due to the central governor[1] or
Boksem's cost-benefit analysis centre[2] (which may actually be the same brain
areas) deliberately generating fatigue due to excessive negative stress. So
the mechanism isn't "lack of sleep causing damage, resulting in fatigue", it
is more along the lines of "central governor sees that we aren't getting
enough sleep, and then deliberately generates fatigue to tell us we need to
sleep more". So even though it's not a psychological primary cause, it's
probably fair to say that the fatigue is psychosomatic because the brain is
doing a psychological determination based on a physical input. (The same would
apply for excessive exercise resulting in overtraining).

If you prefer, you could call it "functional" rather than psychosomatic. I
prefer not to get caught up on terminology, and instead concentrate on what's
actually happening in the body.

[1]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3323922/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3323922/)
[2]
[https://www.researchgate.net/publication/51426280_Mental_fat...](https://www.researchgate.net/publication/51426280_Mental_fatigue_Costs_and_benefits)

~~~
collyw
To me this is a bit of a cop out in explaining things. Clearly mental state
can affect physiology and vice versa. Placebo effect is a prime example.

If doctors or professionals can't explain things, they should admit it rather
than trying to claim it is in people's head and ignore it or make it seem like
it's below them.

Placebo can have as much effect as some medicines and its an aspect of
medicine that I feel should be taken far more seriously. I see no reason that
mental state shouldn't be taken into account as much as physical (other than
the fact that its more difficult to measure).

------
bobzibub
I appear to have them under control now. I have been on a Ketogentic (< 20g
carbs) diet (mainly to lose weight) and lack of migraines is one of the
pleasant side effects. I've had two since starting months ago but I may have
had too many carbs those particular days. I'd have almost one a week if
stressed. The last two were so mild that I didn't bother with my regular
Advil.

Not saying others _will_ have the same experience but Keto is one treatment
for various neurologic issues. I certainly didn't have them as bad as the
author or others here. But it may be an avenue to consider. It is nice to not
fear the zigzags.

Best wishes to all sufferers of migrains. b

~~~
initram
That's fascinating to me. I find that eating a high protein, low-carb
breakfast is a fast track to a migraine for me. I can feel it coming on and
grabbing some carbs will fight it off. I wonder why it's the opposite for some
people?

------
legohead
I grew up with migraines. Frequency ranged from once a week to once every few
months, with the average being 1 or 2 a month. Mild ones left me sleeping near
the toilet. Some were so bad I truly believed I would die, even though I would
tell myself I've been through it before..

Then I moved to California (from Oklahoma), and I haven't had a migraine
since. In OK I would also get these strange allergy attacks where my nose
wouldn't stop running and my head would be stopped up for a day or two, to the
point I couldn't concentrate enough to work. Those stopped after I moved as
well.

The "allergy level" between the two states isn't significant. OK is a little
higher, but not huge. So I think my issues may have been related to specific
flora, although doctors never suggested anything like that. I think my
favorite line from the blog is:

> Although migraine symptoms have been described since antiquity, doctors
> still struggle to understand their cause.

------
EricDeb
I have occipital neuralgia (damage to nerves in the back of the head), and the
nerves of the head/neck are common triggers of migraines. Fortunately I don't
have headaches or migraines, just pain, but people who have both are
profoundly miserable I can assure you as I'm in a lot of the Facebook groups.
They are essentially disabled, and mostly bedridden with no end to their
condition in site (most are young and it's not something you die from).
Furthermore, there isn't a lot of sympathy from the outside world as most
people don't really believe chronic pain or chronic headache is even possible.
It would be nice if there was a test to show pain or confirm a headache to
substantiate these horrible conditions.

------
soulnothing
I have migraines and epilepsy.

> I collapse under the side effects of my medication; my mom tolerates hers
> with grace and determination.

My body just will not tolerate medication. I'm not on any medication right
now. But it was pretty much a guarentee I would get 90% of the side effects.
My mom is the same way. In addition my liver is so thoroughly trashed from
anti convulstants, that I need double of anything for it to have an effect.

This whole article really hits home except for: > TO THIS DAY, I GUARD A
HIDDEN HOPE that I will receive a new diagnosis, one that clearly explains the
severity of my symptoms.

I'm done trying, done with doctors visits new medications. I've been in
hospitals since I was 2, it's time too enjoy life as much as I can and push
forward. The bigger problem has been my friends, they constantly badger me to
go get help.

There is one downside to this. I went to the ER a few weeks back. I have a
rare migraine disorder (Hemiplegic [mimics a stroke]). The doctors said I was
a hypocondriac, who was making up a migraine condition, and placed me under
psych evaluation. Because I didn't have a history. Which was because all the
medications made it worse.

> Chronic migraine creates all sorts of discomfort and anguish, but what has
> been hardest to bear is not knowing what this means for my future. I don’t
> know how debilitated I’ll be or who will take care of me or what I’ll do
> about money.

We are given a set hand when we start life. You'll discard some, pick some up.
But there are some cards you're stuck with. If you have something chronic, you
may not be able to resolve it. If you do great, fantastic. Find small little
tricks to get you by, and work with it.

Make the best of each day, do everything you can. Don't let it hold you back.
I've found the hardest part is not on me. I feel practically discouraged, when
I get a spike of pain, or become paralyzed. People rush me, because they care.
But just let me be. Constantly being coddled makes me almost regret trying
certain things. I feel really lucky now, to have a group of friends who are
like. "Him yeah he's fine just seizing. He'll come too in about ten mintues."

We have so much to learn about neurology. I've bounced around diagnoses. The
resolutions have been largely outside of western medicine. The biggest change
came about five years ago. An acupuncturist had me take a genetic food allergy
test . I had to pay out of pocket. But after cleaning up my diet, my migraines
were cut in half. I get a cock eyed look from doctors, when I say my treatment
is this natural thing, or dietary.

~~~
Sevrene
> after cleaning up my diet, my migraines were cut in half. I get a cock eyed
> look from doctors, when I say my treatment is this natural thing, or
> dietary.

If your 'natural' treatment is just dietary change, that is actually a very
valid way to reduce migraines. Your doctor should know that.

Some chemicals in foods are known and some others just suspected to trigger
migraines, for instance Tyramine is highly suspected of triggering migraines.
For me alcohol has a huge impact on the severity of migraines or just
triggering them all together. I've eliminated alcohol completely because of
it.

------
mitchellbryson
The first time I got scared about my migraines and decided to do something was
after my first silent migraine. Before this I had just had them about twice a
year lasting roughly 3 days.

My silent migraine started with pins and needles in my tongue, speading slowly
to the rest of my jaw and then finger tips. Then I lost sight in the parts of
my vision where I was focused, it became grey and bright around the edges. I
still had peripheral vision. The last symtpom was what I could only describe
as temporary dyslexia. I was reading sentences aloud and skipping whole words
or moving them from the start to the end. It sounded like gibberish but in my
head it somewhow made sense. I started to panic until some frantic googling
brought up these types of migraines. Which is when I instantly recognised all
my symptoms as familiar but without the headache and light sensitivity seemed
very alien and very scary.

~~~
mitchellbryson
I also asscociate them with the more or less light as they seemed to occur at
the start of spring or end of autumn.

------
BobHermen
My migraines occurred roughly twice a year for roughly 20 years. The symptoms
have been sparkling lights in vision, effective blindness and incapacitating
confusion lasting about eight hours. Extreme pain and vomiting only occur
about half the time.

There is no connection to stress but most occurred when out in glaring
sunlight. One happened when a kid flashed a laser pointer into my eyes from a
distance. They maybe connected to lack of sleep.

I have not had any for about 2 years at which time I began taking Citalopram
and 'Breo' for other conditions. It is hard to imagine how those two would
make any difference but I post this in case someone finds it useful.

------
SloopJon
I know someone who lives with severe chronic migraines. She writes about her
experience when she can on thedailyheadache.com. Similar to the author, she
searches desperately for triggers, treatments, and even moved to a drier
climate.

My sister-in-law gets debilitating multi-day migraines. She too searches
desperately for triggers, and has a hard time with medicine.

I get cluster headaches for a couple of months every two years or so. Although
they are extremely painful, it's infinitely easier to cope with an episodic
affliction than chronic pain with no end in sight.

------
arjie
I used to get migraines when I was a teenager. Full aura and the absolutely
unbelievable throbbing headache. I have a vivid memory of once getting one
from eating chocolates¹ and having to sit in a dark room with no sound because
practically anything would add to the throbbing.

For what it's worth, they just went away when I got older. Haven't had one in
over a decade.

¹ Tasted great, though, and I remember eating the variety (which I remember
being called 'Praline Leaves' or something of the sort). Never found it again.

------
WhitneyLand
Did amy of the excitement around magic mushrooms as a migraine treatment ever
pan out?

~~~
kolinko
I think they were tested as a cluster headache treatment, not migraines

------
Theodores
I am not a migrane sufferer but I do work with two people who are sat
next/opposite me that do get them. I also get a cat that will visit me at my
desk. I don't think the cat gets migranes however there have been times when
all the migraine and allergy problems of the world have been blamed on my
furry friend. So the haywire craziness of my colleagues' immune systems is
entirely due to a cat, even though there is no correlation between 'migrane
days' and 'cat visit days' \- makes sense to me, particularly since the
migraines predated the cat.

I just quietly take my desk cat to another colleague's desk, far away from the
allergy zone, however, I would far prefer the company of the cat to some of my
'haywire bodied' workmates... I sometimes want to say 'you live in the middle
of a ring road in one of the most polluted cities in Europe breathing diesel
particulates all day long and you think this cat is causing your migraines!'

I live in the suburbs, to the west of the city, not on a major road. There are
no busses thundering by my door. I walk/cycle in to work rather than spend 2
hours a day packed into public transport. My immune system has to deal with
cat hairs not the combined toxic soup of pollution that goes on in the city or
a smorgasbord of medical pills to counteract the allergy.

I do understand that people can have allergy haywire hell from birth and that
things like cats are a serious allergy problem. I do know how debilitating
these things can be, i.e. can't really work. However, I feel that my
colleagues are in a horrible catch-22 of medications and lifestyle choices. If
they could somehow move to somewhere where breathing was possible they might
not have that particular continual assault on their system. But it is about
assaulting the system in the right way, so more cat is probably needed rather
than the 'OCD' everything must be sterilised clean with chemicals approach to
the home.

But it is too late, the die was probably cast in early childhood for my two
colleagues and they are condemned to spending the rest of their days 'avoiding
cats', taking the pills and doing whatever the doctor says. If I did a house-
swap with them I doubt that they would be miraculously cured (or that I might
suddenly start getting headaches and rashes).

My colleagues will probably bring up children that never play with cats and
where every surface is chemically blitzed clean. Their children will probably
grow up in a world where taking all the pills makes sense and things like
cats/flowers/hay-lofts/soil are verboten. They will probably blame genes
rather than 21st century lifestyle choices when trying to work out what has
gone wrong. The problem will move on to another generation, more money for big
pharma, nothing solved.

------
hogrammer
Also, see Oliver Sack's excellent book: [http://www.oliversacks.com/books-by-
oliver-sacks/migraine/](http://www.oliversacks.com/books-by-oliver-
sacks/migraine/)

------
anondon
Modern medicine works great as a framework to treat pretty much all
diseases/conditions. But I feel alternative forms of medicine are not viewed
as viable forms.

Anyone has experience with alternative forms of medicine (homeopathy,ayurveda)
for migraines and other conditions?

~~~
WhitneyLand
Why do you feel that alternative medicines have not been given due
consideration? See quote below from WP.

I'm always surprised how easy it is to convince ourselves to try something
when we don't have logical reason to do so.

Maybe it would be helpful to share the reasoning that leads you down this
path?

"Despite significant costs in research testing alternative medicine, including
$2.5 billion spent by the United States government, almost none have shown any
effectiveness beyond that of false treatments (placebo). Alternative medicine
has been criticized by prominent"

~~~
tomhoward
It's worth noting that one of the winners of the 2015 Nobel Prize in
Physiology or Medicine was a longtime researcher in Traditional Chinese
Medicine, who developed a malaria treatment based on a TCM practice[1], saving
millions of lives.

But there's another kind of evidence that is at least somewhat suggestive of
some degree of efficacy: the market.

In spite of all the studies claiming to disprove alternative medicine, and in
spite of all the ridicule from skeptics, millions of people spend billions of
dollars on natural/alternative treatments.

Some of them (including some I know personally), are more highly educated, and
far more science-literate than the average person, and the average "skeptic".
They certainly know how to tell the difference between a placebo and a genuine
benefit.

Which is of course not to say that all CAM practices are always beneficial for
all people/conditions.

But like everything in the natural world, human health is complex and multi-
faceted, and such rigid, simplistic positions as "alternative medicine is
never more effective than a placebo" rarely turn out to be completely true.

[1] [http://theconversation.com/is-the-2015-nobel-prize-a-
turning...](http://theconversation.com/is-the-2015-nobel-prize-a-turning-
point-for-traditional-chinese-medicine-48643)

~~~
WhitneyLand
1). It is false, your implication that alternative medicine won someone a
Nobel Prize. Artemisinin has scientific, peer reviewed research to support its
claims. It would been impossible for Tu Youyou to win without real scientific
evidence. The last award to lack much science was invention of the Lobotomy,
which was called an "astounding error of judgment"

2). "The market" is provably an unreliable source of evidence given the
historic success of snake oil and the popularity of many treatments later
found to be dangerous.

3). Your friends absolutely cannot reliably detect a placebo effect. No one
can, that's the whole reason to double blind tests.

4). Please don't misquote me. I did not say alternative medicine is "never
more effective than a placebo". The statement was "almost none" which is true.

5). Science is not "ridged and simplistic". It certainly can be improved and
the great part is when practiced properly it allows for the possibility it is
wrong and self corrects.

~~~
tomhoward
Your point seems to be that any efficacy of non-mainstream medical practices
is so minor and marginal that it should all be ignored.

Please understand my point is simply that a somewhat more balanced and open
approach is warranted, as it may lead to more breakthrough discoveries like
Artemisinin.

To your points:

1) _Artemisinin has scientific, peer reviewed research to support its claims._

Yes, of course, I agree completely.

But the point is that people who push the view that _any medical practice that
comes from the natural /traditional/alternative medicine world is by-
definition false and harmful snake-oil_ are overlooking the fact that there
are several important medical breakthroughs that had already been practiced in
the medical fringes for years/decades/centuries before anyone in the
mainstream got around to researching them.

Other promising recent examples include:

\- the microbiome/neurology link [1],

\- the use of infrared light to treat neurodegenerative illnesses such as
Alzheimer's, Parkinson's, MS and ALS [2], and

\- the use of low-intensity pulsed electromagnetic fields to shrink tumors
[3].

2) _" The market" is provably an unreliable source of evidence given the
historic success of snake oil and the popularity of many treatments later
found to be dangerous._

Note I said "at least somewhat suggestive of some degree of efficacy". Yes of
course the market is fallible. It comprises at least 7 billion people, many of
whom are delusional. But some of them are also discerning, intelligent,
educated, science-literate people who, having exhausted all the options
offered by mainstream medicine, seek an alternative and find it extremely
beneficial.

3) _Your friends absolutely cannot reliably detect a placebo effect. No one
can, that 's the whole reason to double blind tests._

Sure, but I'm talking about cases where someone has suffered a chronic
condition like migraine or CFS or fibromyalgia for many years, and has gone
through 5, 10 or more treatments (both mainstream and natural), all without
success, then finally they discover a treatment that permanently relieves
their issue. Someone who has been through that (of which I am one) knows how
to tell whether or not a treatment is effective.

That said, the validity of your comment depends on exactly how you define
'placebo'. If you were to respond that these conditions are likely emotional
in origin, and that the treatment just relieved the emotional issue, I would
agree with you. However, in these cases there are have still be physiological
symptoms that corrected after the treatment (which could be verified with
pathology testing).

It's at this point you risk descending into a debate about whether placebos
can actually have physiological effects or are rather just imaginary feelings
of wellbeing [4], at which point I lose interest in the discussion, as my only
real concern is in getting well and helping others do the same, not wasting
time in arguments over definitions.

4) _Please don 't misquote me. I did not say alternative medicine is "never
more effective than a placebo". The statement was "almost none" which is true_

My apologies, that wasn't meant as a quote of yours, but rather a
characterisation of much of the standard position I'm used to hearing from
avowed "skeptics".

But the problem with taking the "almost none" position with medicine is
similar to the "almost all startups fail" position, which is that the
exceptions, whilst they may be very rare, are also the most important cases.

It's quite easy to be highly successful predicting the failure of startups;
you just predict the failure of every new startup to launch, and achieve a >
99% success rate.

But the problem is that you'll miss the next Google, Facebook, Airbnb etc.
I.e., the times you're wrong are the times it matters most to be right.

In my experience and observation, the case is very similar with medicine.

[1]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4662178/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4662178/)

[2]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4707222/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4707222/)

[3]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3770670/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3770670/)

[4] [https://www.sciencebasedmedicine.org/is-harnessing-the-
power...](https://www.sciencebasedmedicine.org/is-harnessing-the-power-of-
placebo-worthwhile-to-treat-anything/)

~~~
WhitneyLand
>"people who push the view that any medical practice that >comes from the
natural/traditional/alternative medicine >world is by-definition false and
harmful snake-oil"

I don't see prominent people in medicine saying this at all. They don't mind
if you pull the medicine out of your ass, as long as it's efficacy and safety
is tested with some rigor before advocating it.

>people who, having exhausted all the options offered by >mainstream medicine,
seek an alternative

This practice is dangerous and has resulted in many negative outcomes. This is
navigating through a minefield of unsupported claims, no quality evidence,
anecdotes, and people trying to scam you. Very difficult without professional
guidance.

>"Almost all startups fail too..."

False equivalence. Most failed startup don't kill people. Besides, no one said
alt medicines shouldn't get a shot. The promising leads will continued to be
followed. It just has had an extremely low hit rate.

~~~
tomhoward
Just note the words/tone you use when addressing this topic:

\- _They don 't mind if you pull the medicine out of your ass_

\- _This practice is dangerous and has resulted in many negative outcomes.
This is navigating through a minefield of unsupported claims, no quality
evidence, anecdotes, and people trying to scam you._

\- _Most failed startup don 't kill people._

Think about how much harder it makes it to get any proper research done, when
this is the attitude held and promoted by people in the mainstream science
community.

It's all very well for people to look at the artemisinin case and say "yes
well it's only thanks to modern science we could establish the efficacy of
that". Which is true, but it's also only because of the people who
avoided/resisted succumbing to the zealotry of mainstream science that it was
able to get on the radar of mainstream science at all.

In truth, serious harms and deaths as a direct result of alternative medicine
are very few. The overwhelming majority of natural/alternative medicine
involves educated people undertaking low-risk treatments for non-life-
threatening conditions, and experiencing an improved quality of life as a
result - hence they keep going back.

Primary examples are: yoga, meditation, hypnotherapy, massage,
muscular/structural adjustment (osteo/chiro) - all of which work to relieve
stress/trauma and release the effects of stress, leading to a long-term
reduction in stress-related illness; nutrition, probiotics and detoxification
treatments to improve digestion and metabolism.

That list probably captures over 95% of the natural/alternative medicine.
Practitioners of these therapies are trained, registered, and answerable to
regulators, professional bodies, insurers, clients, society and their own
conscience. Unethical/incompetent practitioners are exposed and put out of
business. Where serious harms or deaths occur, it is front page news.

As for efficacy, for these treatments I maintain that the market is a strong
indicator. People who experience benefits keep going back, and in growing
numbers.

But there are also plenty of studies that indicate that people who engage in
the above practices enjoy better health over the long term. Here's a study
that demonstrates improvements in neurotransmitter levels after 12 weeks of
yoga [1].

Meanwhile, deaths just from prescription opioid painkillers numbered over
28000 in the US in 2014 alone [2]. My own experience makes me certain that at
least some of those people could have avoided that fate had they undertaken
some of the treatments mentioned above.

Please have a think about what instinct is really driving you here. I
understand it; I spent several years as a fanatic of Dawkins and his
atheist/materialist mates; indeed that's actually what started me on the path
to where I am now, because at least I (unlike many) picked up the importance
of questioning everything and deeply examining all my own beliefs, assumptions
and biases.

But the attitude you're exhibiting here, and the fact that it is so dominant
in the mainstream scientific world, is actually holding back the discovery of
more breakthroughs like artemisinin, and thus is slowing the progress of
science.

[1]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111147/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111147/)

[2]
[https://www.cdc.gov/drugoverdose/data/](https://www.cdc.gov/drugoverdose/data/)

