
A Town for People with Chronic Fatigue Syndrome - fortran77
https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue
======
mafuyu
I had horrible fatigue a couple years ago; I wonder if it's related to CFS at
all. It was utterly bizarre: I had just come off some antibiotics, when I
suddenly had no energy to do anything at all. All I could do was lay in bed. I
also got walking pneumonia about a month after the symptoms began, and my
roommate had the exact same symptoms. A test for mono came back negative.

The worst part was that the recovery was slow and gradual. After 6 months, I
felt like I could operate as a human being again, and only just this year did
I feel like I'm back to normal.

I'm chalking it up to it being the first time I was on antibiotics for an
extended period of time, plus a run-in with some unfortunate mysterious
disease. I honestly have no idea, though.

~~~
thenanyu
Which antibiotics? I had a horrific experience with fluoroquinolones, and it
put me out of commission for months

~~~
vimy
You probably got 'floxed'. Fluoroquinolones are dangerous and should be
reserved for life and death situations.

[https://www.nature.com/articles/d41586-018-03267-5](https://www.nature.com/articles/d41586-018-03267-5)

Last year the European Medicine Agency put out a warning that the use of
fluoroquinolone and quinolone antibiotics should be restricted. I also believe
the FDA has slapped a black box warning on this class of antibiotics.

[https://www.ema.europa.eu/en/medicines/human/referrals/quino...](https://www.ema.europa.eu/en/medicines/human/referrals/quinolone-
fluoroquinolone-containing-medicinal-products)

~~~
cableshaft
I got 'floxed'. I was prescribed Ciproflaxin from a doctor for a fairly normal
infection, who only said it was an antibiotic, with no mention of side
effects, and said to take it daily for 30 days. I did look at the box when I
picked up the prescription and thought it was really strange that it said "DO
NOT EXERCISE WHILE TAKING THIS PRODUCT" and had a looooong list of side
effects. I took a single pill and I was feeling neuropathy in my legs for the
first time in my life. I kept taking it for eight more days, feeling more and
more scared, as the neuropathy got more and more intense and widespread, and
eventually called the doctor after I started feeling tingling all over my body
and especially my face and felt there's no way that could be normal. They
seemed very surprised but said to stop and gave me a different non-quinolone
antibiotic instead.

I then found the stories, lots of them, online, about people who experienced
horrible side effects. A lot of snapped tendons, neuropathy, etc that went on
for years after they stopped taking the medicine. And I saw a lot of mentions
of deaths from the drug as well, which didn't help matters at all.

And I got to join them in that also. I didn't exercise for at least a year
afterwards out of paranoia that my achilles tendon would snap like the rest
(it already felt sore all the time after that), and thankfully it hasn't so
far.

But I felt neuropathy often. At first pretty much all the time, but eventually
it would go away for a couple of weeks and then come back for a couple of
weeks, off and on, off and on. Mostly in my legs and arms, but sometimes I'd
feel it in my face again.

I went to urgent care to get it checked out a few times over the years and
they would always have to rule out diabetes first because that's their
assumption whenever they hear neuropathy apparently. I had several tests but
they never pinned it down to anything they expected it to be, and didn't
bother investigating my repeated mentioning that "Hey, I took Cipro, and this
happened right afterwards. I read stories that it does this to people, maybe
that could be checked somehow?"

I now just tell people I'm allergic to Cipro and I doctors look at me funny
and ask how that could be sometimes, surprised that anyone would have bad side
effects to it.

The neuropathy is mostly gone away now, but I had it off and on for at least 6
years. My right foot has always felt a little screwed up since as well, often
sore, it's a lot harder to walk on it for long periods of time now (but I can
do it).

Considering there were other antibiotics I could have been prescribed and no
one seems to be aware that it could have serious side effects, I'm glad the
FDA finally started mandating warnings on it, but I still don't think they've
raised awareness enough, as no doctor I've talked to seems to be aware of the
side effects.

Also I am now much, much more skeptical of anything a doctor tells me and make
sure I read all side effects of drugs and I don't wait anywhere near as long
when I have side effects anymore, even if they're somewhat mild.

After reading that article, I'm wondering if maybe I should try to find a
doctor who has experience with this and verify that I don't have lingering
damage from it that could possibly be addressed.

~~~
idlerig
I feel like this is something that a good pharmacist could have helped call
out. Still, they're kind of the last resort in these things, and you won't
always hear the "real" side effects unless you ask them (and they may know
better than the doctor. Glad to hear you're getting closer to okay.

------
DrAwdeOccarim
What an interesting rabbit hole this took me down. So it looks like Ampligen
is "Poly I: Poly C12U is designated by the molecular formula,
[rI(13):rC(12)rU(1)]n where: n = 46–138", which has now been improved to
longer dsRNAs with additional U
([https://patents.google.com/patent/US8722874](https://patents.google.com/patent/US8722874)).

The most interesting thing I've come across is that they dosed it as naked RNA
by IV and it is rapidly cleared
([https://www.ncbi.nlm.nih.gov/pubmed/1974294](https://www.ncbi.nlm.nih.gov/pubmed/1974294)).

They should try formulating it in a lipid nanoparticle. I bet they'd get some
really interesting PK/PD.

So the drug turns on RNase L, which basically shreds all RNA in the cell. It's
a kill switch for the cell. Kind of like the last ditch effort to stop a viral
infection. What's interesting about this drug is that doesn't turn on TLR3
really well because of the U:I mis-matches so it looks like only some cells
turn on RNase L. I don't really get that part.

The other part if they see increased in NK cells but not Tregs. Again, some
cell (maybe APC?) is taking up the oligos from the blood and activating things
a little bit, but not enough? That may explain why the clinical results for
CFS (for example) were so hit or miss: the clearance kinetics of this type of
drug is going to vary wildly from patient to patient.

Another weird thing I noticed is that today, the company changed their name to
AIM ImmunoTech and just got a twitter account
([https://twitter.com/AIMImmuno](https://twitter.com/AIMImmuno)). Seems like
it's tied to the New Yorker article coming out.

------
JoeyJoJoJunior
If you think you suffer from CFS please check out Dr. Howard Schubiner and
read his book.
[https://www.youtube.com/watch?v=0VyH1laOd2M](https://www.youtube.com/watch?v=0VyH1laOd2M)

I suffered from chronic pain symptoms for almost 10 years (was unable play the
piano and type on the keyboard) until I realized it was 100% psychosomatic.

~~~
interpenetrate
you gotta love how quickly people will downvote anyone who provides any sort
of evidence for the existence of psychosomatic syndromes. they'll probably
claim it's because you didn't read the article. but this can't be it because
the article very clearly said the etiology is still up for debate (despite
focusing on the one medical doctor's claims). there's something inherently
offensive about the proposition of psychogenic disorders. neurotics will not
so easily give up their jouissance.

i greatly admire schubiner and sarno for exploring this issue but their limits
are clear, and they admit it themselves. relatively few patients (i think for
sarno it was like 20%?) will "accept the diagnosis." and why should they?
again, in 80% of patients the crisis of jouissance is not sharp enough to
really investigate their unconscious. and of course in many of those 20% of
patients (yourself and myself included) the jouissance is displaced elsewhere,
perhaps to somewhere much less obvious than chronic lower back pain.

~~~
JoeyJoJoJunior
The problem is that we are terrible at dealing with cognitive dissonance.

When someone believes they have a disorder for many years/decades it becomes a
part of their identity. Admitting they were wrong means that they needlessly
caused suffering to themselves. It is embarrassing and emotionally painful.

They become instantly defensive, and hostile towards anyone offering
alternative explanations.

~~~
interpenetrate
indeed the syndrome can take on a life of its own (become part of their
identity), and perhaps that's when it's at its most fragile. it's why after 10
years of suffering your pain could vanish immediately after learning it may
serve a psychological purpose.

but i think for many neurotic people (and most of us are indeed neurotic) the
syndrome (i use lacan's _jouissance_ ) serves its purpose just fine. so don't
you dare take it from them.

------
woodandsteel
Stanford scientists discover biomarker for chronic fatigue syndrome
[http://med.stanford.edu/news/all-news/2019/04/biomarker-
for-...](http://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-
fatigue-syndrome-identified.html)

HN discussion:
[https://news.ycombinator.com/item?id=19831932](https://news.ycombinator.com/item?id=19831932)

------
Hydraulix989
A lot of the symptoms of sleep apnea look like Chronic Fatigue Syndrome on the
surface. If you feel tired all of the time no matter how much you sleep, get a
sleep study. Sleep apnea is pretty treatable. You don't have to be overweight
to have sleep apnea.

~~~
Smaug123
No competent doctor should diagnose CFS without a full sleep study to rule out
such sleep disorders.

~~~
Hydraulix989
One would hope. It took me until early adulthood to get diagnosed with sleep
apnea because doctors had repeatedly told me such things as "you can't have
sleep apnea if you're not overweight," "you have good grades in school and
don't have trouble running 3 miles at track practice, you must not be THAT
tired," "every teenager is tired, you just need to improve your sleep
schedule," "you need to cut caffeine," and by far the worst -- "you're just
depressed, let me put you on Prozac".

These are competent/highly trained doctors that aren't in the Bay Area or New
York but are in a US tech hub containing a Top 15 medical school.

After I insisted on a sleep study, the results came back as me having SEVERE
obstructive sleep apnea with 30 cessations of breath per hour (once every 2
minutes) while asleep. You just don't notice it while you're asleep because
your body kicks itself out of REM sleep into lighter, less productive sleep
but you're not consciously awakened whenever it happens.

I even heard the last two ("you just need an earlier bedtime" and "you're
depressed") EVEN after showing my doctors the sleep study results with the
actual data. Terrible.

If you go on /r/sleepapnea, you'll find that these kind of stories are still
surprisingly and unfortunately very common.

I have jaw surgery at Stanford on the books for early next year to finally fix
this.

------
interpenetrate
>Peterson had considered the possibility of psychosomatic illness but felt it
improbable, because many of the patients were otherwise well-adjusted, with no
history of mental instability or trauma. “I’d seen almost all these people for
three years when they were well,” he told me. Any psychological theory just
“wasn’t right.”

in other words, he has no psychological theory. in reality conversion symptoms
do not depend on "mental instability" or "trauma" in the popular sense. but of
course why would you expect an m.d. to be trained in psychoanalysis?

anyone claiming that this is a settled problem and that CFS is an "organic
illness" (because the CDC says so) should study the rise and fall of stomach
ulcers.

~~~
gowld
What happened to stomach ulcers ?

~~~
xsmasher
Stomach ulcers were thought to be caused by "stress," and increased acidity in
the stomach caused by stress, and diet.

It wasn't until 1982 that the bacterial cause was found, and it took years for
the medical community to abandon the "caused by stress" explanation and apply
real treatment.

partly explained here:
[https://en.wikipedia.org/wiki/Helicobacter_pylori](https://en.wikipedia.org/wiki/Helicobacter_pylori)

~~~
tomhoward
I keep hearing this supposedly revelatory anecdote, as if _caused by stress_
and _bacterial infections_ are mutually exclusive factors.

It's well known that chronic stress weakens the immune system, and makes it
easier for a bacterial infection to take hold.

So a more complete hypothesis is that stress can be the cause, whereas
weakened immunity and consequent bacterial infection is the mechanism.

Of course, anything else that causes the immune system to be weakened can also
be a cause.

~~~
xsmasher
Stress was neither necessary nor sufficient to produce the ulcers; it may have
been involved in some cases, but it was not the "cause."

~~~
tomhoward
But H. pylori was also not sufficient to produce the ulcers; most people in
the world have it, but far fewer develop ulcers.

As user interpenetrate has articulated in more depth, the error is in the need
to identify a single, simple "cause".

------
strikelaserclaw
damn, C.F.S is pretty messed up. The weirdest thing is how it seems to happen
so suddenly.

~~~
fortran77
Also, with any "syndrome" you get a range of people with the symptoms, some
with different underlying causes (and some, no doubt, with psychological
ones.)

