A Town for People with Chronic Fatigue Syndrome
newyorker.com
newyorker.com
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.
Humans have thousands of strains (types) of bacteria (100 trillion in human body) - some beneficial, some contributing to and causing ilness.
They settle on some equilibrium in each of us - a balance where the population ratios stay relatively constant (guess).
When you wipe out in one go (with antibiotics) a big chunk of this population they will not necessrily come back to the same balance. And this may be the problem because this new equilibrium may be with some illness-contributing bacteria winning too much of the space.
It's not impossible that the best cure for that is to take antibiotics again followed by probiotics to help recover the ones we know are good. This is also tiny part because you can buy couple of dozens of different strains but your body has thousands - so not sure if this alone is enough. Ideally you'd drink your healthy mom's breast milk - but that may not be an option for all of us :)
I wonder why there are no more big-data-like studies on strain population ratios. I'm guessing because the numbers are counted in trillions, small sample (saliva/urine/bowel?) should give quite good picture? Is it expensive to map it? How is it done to detect presence of bacteria? Is each test focusing only on single strain or you can do it in bulk to map it to some kind of histogram?
Not an expert but there are studies going on. The current process seems to be roughly:
>There are two labs, O'Toole explains, that processed my sample. The first was the wet lab, where, through various molecular assaults, DNA was extracted, 95% of which was bacterial. This was then sent to an external company to be sequenced – there were over 30,000 sequences – and then a huge file of data was crunched by what O'Toole called "a bunch of computer nerds who sit around all day generating stats" in the institute's data lab. (https://www.theguardian.com/science/2014/feb/11/gut-biology-...)
so you get a lot of genetic data mixed up from a lot of strains and it's probably hard to make sense of.
There are some commercial services that will check your bacteria out from $90 https://ubiome.com/consumer/explorer/ https://atlasbiomed.com/uk/microbiome
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...
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.
There's your answer. It was the depletion of your gut microbes that contributed to your fatigue.
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).
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). Seems like it's tied to the New Yorker article coming out.
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.
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.
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.
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.
e.g. if you happen to have blood work from a patient pre-CFS and post-CFS it's very, very common to see a raised T-cell count and an immune response against the Epstein-Barr virus (or some other retrovirus) in the post-CFS that isn't there pre-CFS.
Of course, it's not a great diagnostic tool because you need the patient to have had some blood work just before they got sick. But it does make the "it's all just psychosomatic for everyone" argument a bit unlikely.
But the stigma attached to mental illness is real, so many/most sufferers are not at all receptive to this advice.
Just a short period of observing people who suffer from these syndromes makes it very clear that this is a psychological issue. There is a whole cluster of these vague illnesses that afflict a subset of the population with predictable psychological and demographic attributes. Nothing about their physical mechanics is in any way similar; the common mechanism is psychological.
HN discussion: https://news.ycombinator.com/item?id=19831932
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.
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.
The other relative had a bad reaction to medication following a virus and never quite recovered. I will readily admit that her condition's roots could be autoimmune too, but she suffers from physical fatigue rather than tiredness. She has to be extremely careful not to overwork or overexercise, but her life is otherwise unimpaired. My relatives rather clearly don't suffer from the same condition but they're diagnosed the same way.
Having said all this I doubt I changed your mind, so let me make a slightly different point: what are the minimum and maximum amounts that you could sleep tonight? If you wanted to, could you sleep for 12 hours straight? How about sleeping for 12 hours for back-to-back days? I know that I can't! I'm literally physically incapable of it. I cannot sleep for more than 10 hours, even if I've accrued a massive sleep deficit (and usually it's more like about 5-7 hours). CFS is not laziness
i very much agree with you that part of this discussion is about the questionable validity and reproducibility of the official diagnostic categories. what i disagree with you about is that anything could be exclusively either physical or psychiatric. that's obviously false.
My larger point, though, is that CFS is likely not a single disorder and instead is an umbrella diagnosis for several distinct conditions that aren’t well understood (yet).
I don’t actually think we’re in disagreement I think I just worded my post poorly
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
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.
As user interpenetrate has articulated in more depth, the error is in the need to identify a single, simple "cause".
Susceptibility to flu is influenced by immune system fortitude; that's uncontroversial. That stress is one factor (among several) that can weaken the immune system in an otherwise healthy person, is surely useful to consider when making life choices.
I notice in myself that I often get a sore throat after being stressed and not sleeping enough.
It seems like people had symptoms that were mistaken for stomach ulcers in the popular knowledge of the time. The incidence rate going down for stomach ulcers after learning more about stomach ulcers tells us nothing about what happened to those people. We don't know what they were really suffering from, what they might now-a-days be diagnosed with, etc. And we aren't told anything here about what other environmental factors may have led to a decline.
the question is one about etiology. the history suggests that the popular etiology (bacteria and probably also NSAIDs linearly cause stomach ulcers) is entirely insufficient. the questions you're asking ("we don't know what they were really suffering from") are important, but to most people these questions don't matter anymore. there is practically no medical research being done on these questions today. why bother? the "psychosomatic school" is the only school who takes the issue seriously anymore. their work is worth considering, that's my point.
The possibility that there's at least a component of the illnesses that aren't psychosomatic is worth considering, but such a school of thought has always been on the fringes, and serious funding to examine actual causation has always been a challenge for illness communities that have offhandedly been thrown straight into the looney bin.
for what it's worth the "psychosomatic school" i'm most familiar with criticizes harshly the "psychosomatic school" that i believe you're familiar with. indeed there are many ineffective and harmful centers for the treatment of "chronic illnesses." it's really shameful
A more complete telling of the story may be that researchers ingested a volume of the bacteria that was more than their immune system could easily contain, and got ulcers.
Given that stress is well known to be a cause of immune system impairment, this could still be an upstream cause of the bacterial outbreak that then leads to ulcer formation.
In ordinary conditions (i.e., not drinking a vial of bacteria), immune impairment is a necessary condition (or cause) of the H. pylori outbreak.
And stress is one possible upstream cause of that.
But that aside, the virulence of an infection will always be greater against those who have weaker immune systems. This is why we always see the elderly and those with pre-existing serious illnesses more likely to be struck down or killed by infections.
Stress is just another factor that can lead to impaired immunity and result in an infection becoming virulent.
it's an important point to make, that clearly there is an "organic" component and a "psychic" component to every ailment (or human experience for that matter). as anyone who has recovered from a primarily psychosomatic chronic illness can attest, you're eventually faced again with the contradiction between organic and psychic when you get your first head cold or whatever. this is a question of internal vs. external, dialectical vs. mechanical.
if someone murders me, we could assume this is a mechanical act. the immediate death obviously wasn't some sort of psychosomatic construction. no matter how mentally prepared i was for the moment the bullet pierced my forehead, a fundamental biological law asserted itself and there was nothing i could do about it.
but here we have no problem jumping straight to asking the question "what was the murderer's motive?" perhaps i was in the middle of robbing a bank. why was i robbing the bank? naturally these answers help construct the etiology of the death (and extend into other etiologies!). the question is: where do we draw the lines between moments? the radical answer is that we shouldn't. we should be willing at any moment to consider the many possible ways in which the various forces interact. bring the mechanical into the dialectic, so to speak.
in this light, is "stress" a useful etiological category? i don't think so, or at least i think its utility is much weaker than the pharmaceutical industry would hope.
freud had a client named elizabeth von r whose leg pain of two years was suddenly cured after working through its origin: her father, on his death bed, would rest his head on her legs as von r cared for him. was von r's leg pain caused by "stress?" hardly more than it was caused by "living." both of these proposed causes are obviously cop-outs.
edit: the point then is not to find the singular cause or plural causes. the point is to abstract the forces to analyze their underlying laws of motion and then to creatively synthesize them to predict and change the future. that's what science is. this is not the level of operation of our medical or psychiatric industries or their researchers.
Totally psychosomatic.