
Chronic Fatigue Syndrome - tosh
https://med.stanford.edu/chronicfatiguesyndrome.html
======
dang
A New Yorker article on this topic has also been on HN today:
[https://news.ycombinator.com/item?id=18321230](https://news.ycombinator.com/item?id=18321230).
Both threads are good.

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monotone666
I’ve been diagnosed with CFS. I had a diagnosis of Kawasaki disease,
autoimmune vasculitis, at age 3. And reoccurring fevers and sore throats every
three months (coresponds with lifecycle of EBV). Pneumonia and mono as a
teenager. I’ve had a mild case of CFS for a little over six years that became
more severe three years ago, both following mono infections. I’m unable to
work without a recovery period that lasts for days. During a year long
infection with the Epistein Barr Virus I lost my sense of smell, started
losing my hearing, have problems with depth perception/driving, and the
sustained focus required for reading. I lost my ability to do circuit analysis
and BASH. I used to be a high level athlete and lost half my strength. I got
very lucky and discovered that iodine can treat Epistein Barr Virus, otherwise
the prognosis for a EBV infection of longer than 6 months (CAEBV) is death.
The requirements to get disability in the United States for the disease of CFS
basically requires a diagnosis of CAEBV plus a impossible to prove
“subjective” criteria that basically guarantees you will have to go in front
of a judge and be subjected to their opinion of the condition. When shopping
for a lawyer I was refused to even have it on my application as a disabling
condition despite it being listed in the social security “blue book.”

I’m also missing 10% of my mitochondrial DNA and have a gene which is the
single largest risk factor for MS (also caused by EBV).

I lost my mind during the last infection.

The virus is interesting. It’s one of the most common viruses and has an
ability to cause the body to “forget” adaptive immunity. It reproduces in
response to low vitamin B12 levels or mitochondrial dysfunction.

~~~
monting
That’s a tough situation, I feel for you. Not implying this is the solution,
but I’m curious if you’ve tried ketogenic diets/fasting? They induce
mitochondrial biogenesis, and appear to affect immunity positively.

*edited spelling

~~~
monotone666
I eat a low carb diet. I don’t think ketogenic is a good idea due to liver and
kidney damage. I do intermittent fasting everyday. I keep meaning to go on a
longer fast every now and then...

I recently got food stamps so I’ve been enjoying food more :)

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ambrop7
A personal anecdote: recently I came quite close to being diagnosed with CFS
or fibromyalgia but luckily found out I have primary hyperparathyroidism. I
have no idea how all the doctors could have missed it, I had to figure it out
myself.

"Of all the missed diagnoses of ME/CFS and fibromyalgia, primary
hyperparathyroidism proves to be one of the most tragic simply as a result of
how treatable the condition is relative to the suffering it can cause."
[https://phoenixrising.me/archives/23988](https://phoenixrising.me/archives/23988)

~~~
jdhn
How did you figure it out, did you look at the results of your blood test and
do a self-diagnosis from there?

~~~
ambrop7
I've been trying to diagnose myself for a long time (about a year) before I
figured it out. By that time I've been to my doctor multiple times, to two
orthopedic doctors, one gastroenterologist, had 3 spine MRIs, gastroscopy,
abdominal ultrasound, chest X-ray, a bone scan, lots of lab tests incuding
lyme disease, probably other tests and physical therapy. I was to the ER twice
where they also had no clue. Someone even advised a psychiatry referral which
I did not go for. I got on the right track when I was studying endocrine
diseases and happened to include calcium on a panel of blood tests I ordered
for myself (presumably because I stumbled upon hyperparathyroidism). Once
calcium came back high, it was clear after 2 more blood tests, and the doctors
at the Norman Parathyroid Center (where I'm having surgery) confirmed it based
on my lab reports. I'm having surgery in 2 days.

~~~
mildavw
Good luck. Just wanted to chime in that my Dad had similar (albeit milder than
yours) issues and ran across the Norman Parathyroid Center website while
researching his problems. He had surgery there about 6 weeks ago and indeed
they found and removed a dime sized tumor.

He has high praise for the docs there. And he’s had an excellent recovery.
Energy and alertness has returned full force! Hope your results are similar.

~~~
ambrop7
Thanks. Indeed I read only praise of this place, and their web site is an
excellent source of information. It is now quite certain I have this but until
I get the surgery and see the problems resolving I still worry a _little_ bit
if we're right :)

Supposedly it is rare in young people (I'm 29), maybe that had something to do
with nobody seeing this.

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Tycho
My father started suffering from ME/CFS about 20 years ago. Fortunately it is
not so severe that he can’t enjoy life, but he had to stop working (and the
authorities didn’t support early retirement because it’s not a well understood
condition).

I remember my father was initially off work with a virus, and then
subsequently was diagnosed with some sort of thyroid condition which required
lifelong prescription drugs to treat. But he never fully recovered (complained
of constant fatigue, muscle aches in the morning, and a flu-like feeling) and
eventually was diagnosed with ME, although there is no test to prove it
definitively, whatever it is.

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JazzXP
My wife suffers from CFS, and for the first two years, she was pretty much bed
ridden. The first six months she couldn't even read in bed because she was so
exhausted she couldn't concentrate enough. Lucky we had a dog to keep her
company.

We tried various techniques through the years including modafinil (and
sleeping tablets at night to counteract that), but nothing really worked
beyond a temporary solution.

These days (7ish years later) she can work full time as long as she maintains
her energy envelope. So doesn't do much on weekends, needs to rest up.

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jessriedel
Is there evidence of a well-defined physiological mechanism rather than merely
being a symptom cluster that might be purely psychological? Some brief
Googling suggests that CFS is sometimes precipitated by various viral or
bacterial infections, which is a step in the right direction, but I haven't
read anything yet that rules out the alternative hypothesis that this is a
(cluster of related) psychological disorders that is sometimes prompted by a
life event. The dozen patient organizations campaigning for recognition is a
bit of a red flag.

~~~
DubiousPusher
First I want to say that determining something as Psychological doesn't put
you in much better of a position than just saying something is a somatic
condition we just don't understand yet. Secondly, to sufferers who are upset
by this idea, please don't be. Yes, when the vast majority of people hear that
a condition is psychological, they somehow think it's easier to deal with,
less real, madeup or somehow not physical. This is wrong and any good
physician will treat you with the exact same empathy and respect whether they
believe something is psychogenic or somatic.

Ok, with that out of the way, the answer to your question is yes and no. Some
folks emphasize the comorbidity of ME/CFS with depression to try and establish
ME/CFS as a psychogenic illness. Some cases of CFS improve with the
introduction SSRIs. Which further embeds this belief. But its entirely
possible that the depression is a result of the day-to-day suffering. And the
improvement reported with SSRIs isn't just a result of the sufferer's
generally improved disposition.

The main difficulty with CFS is that it is currently a bucket diagnosis. So,
you end with people in that bucket that have other diseases. For example,
there are probably a good number of people in the CFS bucket that have an
autoimmune disorder like Rheumatoid Arthritis or Spondylopathies because the
mechanisms of diagnoses for these are somewhat unreliable and the effects of
treatment are purely subjective if blood tests are consistently normal.

Without some differentiator, it's really difficult to study the condition with
confidence. Any effect or symptom sampling will be diluted if our bucket has
multiple diseases in it. It's because of this that I think sufferers should
resist the temptation to pitch their tent around the CFS flag. But I do
understand the yearning to have a name by which to call your affliction.

~~~
AnimalMuppet
"Comorbidity" \- but which causes which? Depression can absolutely lead to
fatigue. But if you were healthy, and suddenly you have absolutely no energy,
and your brain is fuzzy, and you're sleeping 14 hours a day and still don't
have any energy the other 10 hours, well, _that 's depressing_.

~~~
DubiousPusher
This is why I wrote...

> But its entirely possible that the depression is a result of the day-to-day
> suffering. And the improvement reported with SSRIs isn't just a result of
> the sufferer's generally improved disposition.

Though I meant is where I wrote isn't there.

~~~
AnimalMuppet
Note to self: Read more thoroughly next time...

Mea culpa.

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cpncrunch
Montoya is still prescribing Valcyte for patients even though his own study
found that there was no significant difference between Valcyte and placebo
(even though the Valcyte arm had more symptoms at baseline):

[https://onlinelibrary.wiley.com/doi/pdf/10.1002/jmv.23713](https://onlinelibrary.wiley.com/doi/pdf/10.1002/jmv.23713)

------
teyc
Ron Davis, also at Stanford, has been working on some diagnostics on severely
ill MECFS patients. It is a severe disease that has been underfunded and under
researched for many years. My son got sick steadily over years, and luckily
his is not as severe as others, but it got me very worried.

------
lukestevens
For HNers with ME/CFS (or an interest in it) I can recommend last year's
documentary Unrest by Jennifer Brea:
[https://www.unrest.film/](https://www.unrest.film/). It's available on
Netflix.

It's a confronting look at the human side of severe ME, and a call for greater
recognition. If you've had people around you struggle to understand what
you're dealing with, showing them Unrest could help a lot. Check it out.

~~~
cpncrunch
While it's a good movie, I found it very negative in that it didn't show any
recovery stories. Jen herself seems to have recovered a lot, and has been
travelling around the world to talk about Unrest.

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Madmallard
I think in several cases the cause can be traced to taking multiple courses of
ciprofloxacin or other fluoroquinolones which have been known to be
mitochondrial topoisomerase poisons for decades. The drugs are super dangerous
for public health and should be reserved for last resorts and the medical
industry is finally catching on.

If you ruin the mitochondrias ability to reproduce you will develop latent
muscular and neurological dysfunction.

~~~
monotone666
There was a study in 2008 that showed the majority of people with chronic
fatigue had mitochrondrail dysfunction that corelated with the severity of
symptoms.

~~~
cpncrunch
If you mean Myhill, her studies haven't been replicated. More recent studies
have shown similar mitochondrial ATP between patients and controls.

[http://www.biochemsoctrans.org/content/early/2018/04/16/BST2...](http://www.biochemsoctrans.org/content/early/2018/04/16/BST20170503)

------
giardini
Anyone tried BHT (butylated hydroxytoluene) for Epstein-Barr Virus or CFS? It
is claimed to be active against lipid-containing viruses like EPV:

[https://en.wikipedia.org/wiki/Butylated_hydroxytoluene#Healt...](https://en.wikipedia.org/wiki/Butylated_hydroxytoluene#Health_effects)

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kobayashi
Related longform article from a first-person perspective:

[https://www.newyorker.com/magazine/2003/07/07/a-sudden-
illne...](https://www.newyorker.com/magazine/2003/07/07/a-sudden-illness)

Edit: Weird...this article now also on the first page of HN.

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Hydraulix989
Sleep apnea at the surface looks like CFS since you aren't consciously aware
that you stop breathing in your sleep but still feel tired all of the time
when you wake up in the morning.

~~~
dkarl
Lots of things look like CFS on the surface, including depression. I expect
there will turn out to be many distinct physical diseases responsible for what
we call CFS, as well as simply depression. I remember first reading about CFS
over a decade ago when most of the information available on the internet was
on sufferers' blogs and forums and being struck by the prejudice against
mental illness. There were a lot of comments to the effect that, "The doctors
said it was all in my head, but then I learned that Chronic Fatigue Syndrome
is a real disease! It totally changed my life knowing that I was sick and not
crazy! I don't have to hate myself anymore." A lot of anger was directed at
doctors who suggested psychological explanations. Even saying, "We can't find
any physical cause, so maybe you should talk to a psychologist as well,"
(which sounds like a reasonable suggestion to me) was treated as a
disrespectful, belittling, arrogant, and sexist. Which I suppose it was in
many cases — there's certainly enough prejudice to go around. But for me as
someone seeing a therapist for depression it certainly made me look at the
people around me differently, having that unguarded glimpse into the revulsion
that some people feel.

