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.)
It's not a syndrome. The scientific name is myalgic encephalomyelitis. There are very specific symptoms you need to have for it to be cfs.
Did you even read the article? It clearly states it's not psychological.
"For decades, many thought that it was psychosomatic. (My symptoms were so odd that, over the preceding year, I, too, had wondered if I was going crazy.) This sense lingers in popular culture. In the pilot episode of “House,” from 2004, a patient comes to the clinic complaining of C.F.S., and Dr. House successfully treats him with mints from the vending machine. In a standup set in 2007, Ricky Gervais joked about people who say they have C.F.S. because they “don’t feel like going to work.” Today, though, most doctors who study C.F.S. think that its symptoms are caused by a dysfunction of the immune system, which is typically triggered by an infection, such as the Epstein-Barr virus (which causes mono) or viral encephalitis. Still, they don’t understand why, even as most people bounce back from these ailments, a small percentage of them never recover."
...
"The dominant theory holds that C.F.S. may not have a single etiology but may instead be a dysfunctional state of the immune system triggered by one of several ailments. Another asserts that C.F.S. is actually an umbrella term for several immune conditions with similar presentations. Ongoing research at Stanford and Columbia focusses on pinpointing the causes of the illness and on developing laboratory tests to diagnose it. But progress remains slow because, though the N.I.H. has now determined that the disease is biological, funding has yet to catch up."
> Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition.
> Symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may appear similar to many other illnesses and there is no test to confirm ME/CFS. This makes ME/CFS difficult to diagnose. The illness can be unpredictable. Symptoms may come and go, or there may be changes in how bad they are over time.
Ban me? You would get mad and defensive too if you have been called a nutjob for the last 10 years while you know something is horribly wrong.
CFS =/= feeling tired.
"The most prominent symptom of chronic fatigue syndrome is an unexplained feeling of fatigue, which is not relieved by rest. This fatigue is severe enough to decrease a person's activity level at home, work or school by 50% or more. In addition, the diagnosis requires that patients should have at least four of the following symptoms that also are present for at least six months:
- Impaired concentration or short-term memory, severe enough to affect routine activities at home, work, school or social functions
- Sore throat
- Enlarged lymph nodes (swollen glands) in the neck or underarm area
- Muscle pain
- Pain in several joints, with no redness or swelling
- Headaches that are different in some way: a new type of
headache pain, a new pattern of headaches or headaches that are more severe than before
- Sleep that doesn't refresh, or not feeling rested on waking
- An extreme reaction to exertion: feeling sick after exercise or strenuous activity, often not starting until the next day
People with chronic fatigue syndrome often have other symptoms that are not part of the official definition of the illness, such as nausea and difficulty tolerating alcoholic beverages or medicines that act on the brain. Many people also have allergies, such as hay fever (allergic rhinitis) or recurring sinus problems.
About half of people with chronic fatigue syndrome develop depression in the months and years after their illness starts. However, available evidence indicates that chronic fatigue syndrome is not a psychiatric illness. Rather, it appears to be a physical illness that leads to depression in some people."
> You would get mad and defensive too if you have been called a nutjob for the last 10 years while you know something is horribly wrong.
That sucks; I'm really sorry that you've been faced with that response. I think you'll find much more sympathy on HN than is the norm in mainstream health care systems.
But please don't take out your pain and frustration at other commenters. I don't think that fortran77 is exhibiting the kind of intolerance you've experienced, but instead, making reasonable and critical points about the underlying topic.
No reason to apologize to someone who is trying to get you banned for calling them out for not reading the article when it is very obvious they didn't read the article.
So we're clear - you're saying that the phenomenon referenced in this article, "chronic fatigue syndrome", is not a syndrome? I'm not sure that argument is even cognizable. A syndrome is just a set of correlated symptoms or effects. How can we even discuss this if we can't agree with this designation?
> There are very specific symptoms you need to have for it to be cfs.
Wait... so now you do recognize this syndrome?
> Did you even read the article?
Asking this question, particularly in the demeaning tone which you have adopted, is against the guidelines, which expressly discourage the precise wording you have chosen: https://news.ycombinator.com/newsguidelines.html
"chronic fatigue syndrome" is what it was called before it was better understood.
It is unfortunate and a bit weird that the author referred to the condition with that phrase; doctors and patients are trying to deprecate the term, as it leads to the whole thing not being taken seriously.
The preferred term is "myalgic encephalitis." My girlfriend has it. Roughly put, it's an ongoing brain chronic brain inflammation that leaves her incapacitated for roughly 17 hours a day. She's not "sleepy" or "lazy," she has a fever in her brain and it can't be cured and it's a horrid situation.
>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.
Psychoquacks have no shame. Even when the cause is discovered, and the illness cured, there is still some "psychosomatic aspect to the illness". As far as I know, there's never been a Nobel Prize awarded for someone in the field of psychosomatic medicine.
stomach ulcers were an epidemic problem in the western world in the 1970s and have since virtually vanished. in 1982, a bacteria named helicobacter pylori was discovered and was said to cause IBS, cancer, stomach ulcers, and so on. nevermind that two-thirds of the world's population have this bacteria present in their gut (most showing no symptoms). a medication targeting the bacteria was discovered and then the incidence rate for stomach ulcers plummeted dramatically. not the cure rate, the incidence rate: people stopped contracting stomach ulcers in the first place. somehow, the illness no longer served its purpose (!). this is a confounding proposition so most are quick to come up with alternative explanations (maybe pry internet_user, resident M.D.). indeed the medical industries will offer you some explanations if you can't come up with any on your own that explain away any possible psychosocial etiology.
So you're saying: 1. People thought they had stomach ulcers. 2. Then we learned a lot more about what stomach ulcers actually are and how to treat them. 3. With that improved knowledge it turned out a lot of those people didn't actually have stomach ulcers. 4. So naturally the incidence rate of stomach ulcers goes down, because people are no longer misdiagnosed as having stomach ulcers. 5. ... 6. Somehow jump to conclusion that all those who thought they had stomach ulcers were making it up and it was a psychosocial illness, for which no evidence is provided.
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.
stomach ulcers of course exist. these things are really messy and are a source of internal bleeding. no one was "making it up" (?).
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.
My cousin has being diagnosed formally with MCS and co-morbid CFS, both illnesses with some controversy. I've spent time with them, and learnt that the "psychosomatic school" has always been the prevailing school of thought on the subject, and this presents many hurdles to their every day life, and potential treatment.
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.
yes the most successful analytic practice would be the one that could successfully traverse the boundaries we've constructed between mind and body. the idea is that h. pylori, for example, has a role to play (one way or another) in the reproduction of stomach ulcers, but the bacteria is not linearly causal. rather, it is situated in a complex dialectic web that modern medicine (and the "psychosomatic school" for that matter) are mostly unequipped to analyze. this is reflected in the gross failure of the diagnostic taxonomy produced by the medical/psychiatric industry whose validity should be (but is rarely) continuously questioned.
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
> the idea is that h. pylori, for example, has a role to play (one way or another) in the reproduction of stomach ulcers, but the bacteria is not linearly causal.
As user interpenetrate wrote, two-thirds of the world's population have the bacteria, and most don't get ulcers or other symptoms.
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.
Some infections will be virulent even for people even with optimally functioning immune systems, if it's the kind of infection that acts faster than anyone's immune system's ability to respond, or if it's a new strain that no human's immune system can defend against.
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.
>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.
What a load of unsubstantiated claims. I'm pretty sure things like cancer don't have a psychic component to them (unless you define the psychic component as being depressed because you are about to die).
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.
Most people with this bacteria do not develop ulcers. Psychological stress does seem to increase development of ulcers -- it's a contributing factor.
https://www.ncbi.nlm.nih.gov/pubmed/25111233
I notice in myself that I often get a sore throat after being stressed and not sleeping enough.
It's not useful to try and explain an illness by a singular cause, when multiple factors are extant and important.
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 personally believe that it's extremely unlikely that CFS has a silver bullet cure like stomach ulcers because CFS is an umbrella diagnosis for several distinct conditions manifesting with similar symptoms. The DSM condition is diagnosed through tests by exclusion rather than a single diagnostic test that shows up positive. More apt comparisons are, therefore, migraines or fibromyalgia than ulcers. Patients with CFS have a diverse range of symptoms and comorbidities. I have two relatives with CFS with radically different symptoms and health backgrounds. One has an autoimmune syndrome and has been through several sleep studies. He literally never experiences REM. For him, tiredness is a constant but sleep is never restful. This isn't a psychiatric condition; it's physical. It's also completely debilitating. For years he tried to power through it (he was a management consultant for years and destroyed his health trying to keep going) but this is not a condition that you can will away.
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'm not saying that CFS is "fake", or that ulcers, fibromyalgia, or migraines are "fake." to say that you can "will" these away is an infantilization of psychoanalysis. i would never classify CFS as "laziness." (although i will note that the DSM has historically had no problem about enforcing moral judgements like this in its taxonomy.) people take "psychosomatic" to be synonymous with "it's all in your head," when the point is that it is precisely not "all in your head."
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.
Two quick points of clarification: For a while fibro and empty nose syndrome were considered psychosomatic until physical causes were discovered. I totally agree with you that psychosomatic conditions are not “made up” or “all in your head,” I was trying to convey that the diagnostic criteria revolves around observable traits and behaviors rather than something concrete like a blood test.
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
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.
I was on topical mupirocin and then oral sulfamethoxazole for a couple months, both of which seem relatively pedestrian when it comes to antibiotics. It was my first time taking an oral antibiotic, and it probably nuked my entire gut flora.
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.
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.
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.
Check out monolaurin. It's a natural substance made from coconut milk. It's the ingredient in breast milk that supports a baby's immune system. I used it to kick Epstein Barr Virus. I highly recommend it.
It seems to me that antibiotics are sort of reset-button-gamble - they wipe out large populations of bacteria, some strains die immediatelly, some slower, some are immune etc.
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?
>why there are no more big-data-like studies on strain population ratios
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.
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.
It is, but keep in mind that there are biological markers that are correlated with having chronic fatigue syndrome at p < 0.001 kind of levels.
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.
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.
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.
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.
And nothing about it being psychosomatic means it is any less serious or real a problem. The placebo effect regularly accounts for ~20% of treatment effects, it is extremely clear that our minds have significant power to influence the functioning of our bodies.
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.
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.
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.
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).
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.
74 comments
[ 3.0 ms ] story [ 120 ms ] thread"For decades, many thought that it was psychosomatic. (My symptoms were so odd that, over the preceding year, I, too, had wondered if I was going crazy.) This sense lingers in popular culture. In the pilot episode of “House,” from 2004, a patient comes to the clinic complaining of C.F.S., and Dr. House successfully treats him with mints from the vending machine. In a standup set in 2007, Ricky Gervais joked about people who say they have C.F.S. because they “don’t feel like going to work.” Today, though, most doctors who study C.F.S. think that its symptoms are caused by a dysfunction of the immune system, which is typically triggered by an infection, such as the Epstein-Barr virus (which causes mono) or viral encephalitis. Still, they don’t understand why, even as most people bounce back from these ailments, a small percentage of them never recover." ... "The dominant theory holds that C.F.S. may not have a single etiology but may instead be a dysfunctional state of the immune system triggered by one of several ailments. Another asserts that C.F.S. is actually an umbrella term for several immune conditions with similar presentations. Ongoing research at Stanford and Columbia focusses on pinpointing the causes of the illness and on developing laboratory tests to diagnose it. But progress remains slow because, though the N.I.H. has now determined that the disease is biological, funding has yet to catch up."
> Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition.
https://www.cdc.gov/me-cfs/about/index.html
and also from the cdc
> Symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may appear similar to many other illnesses and there is no test to confirm ME/CFS. This makes ME/CFS difficult to diagnose. The illness can be unpredictable. Symptoms may come and go, or there may be changes in how bad they are over time.
CFS =/= feeling tired.
"The most prominent symptom of chronic fatigue syndrome is an unexplained feeling of fatigue, which is not relieved by rest. This fatigue is severe enough to decrease a person's activity level at home, work or school by 50% or more. In addition, the diagnosis requires that patients should have at least four of the following symptoms that also are present for at least six months:
- Impaired concentration or short-term memory, severe enough to affect routine activities at home, work, school or social functions
- Sore throat
- Enlarged lymph nodes (swollen glands) in the neck or underarm area
- Muscle pain
- Pain in several joints, with no redness or swelling
- Headaches that are different in some way: a new type of headache pain, a new pattern of headaches or headaches that are more severe than before
- Sleep that doesn't refresh, or not feeling rested on waking
- An extreme reaction to exertion: feeling sick after exercise or strenuous activity, often not starting until the next day
People with chronic fatigue syndrome often have other symptoms that are not part of the official definition of the illness, such as nausea and difficulty tolerating alcoholic beverages or medicines that act on the brain. Many people also have allergies, such as hay fever (allergic rhinitis) or recurring sinus problems.
About half of people with chronic fatigue syndrome develop depression in the months and years after their illness starts. However, available evidence indicates that chronic fatigue syndrome is not a psychiatric illness. Rather, it appears to be a physical illness that leads to depression in some people."
https://www.health.harvard.edu/a_to_z/chronic-fatigue-syndro...
Edit: I want to apologize to fortran77. My temper got the better of me.
That sucks; I'm really sorry that you've been faced with that response. I think you'll find much more sympathy on HN than is the norm in mainstream health care systems.
But please don't take out your pain and frustration at other commenters. I don't think that fortran77 is exhibiting the kind of intolerance you've experienced, but instead, making reasonable and critical points about the underlying topic.
But the "did you even read the article" thing has been the death of a lot of otherwise interesting threads lately. Heck, look at this one.
So we're clear - you're saying that the phenomenon referenced in this article, "chronic fatigue syndrome", is not a syndrome? I'm not sure that argument is even cognizable. A syndrome is just a set of correlated symptoms or effects. How can we even discuss this if we can't agree with this designation?
> There are very specific symptoms you need to have for it to be cfs.
Wait... so now you do recognize this syndrome?
> Did you even read the article?
Asking this question, particularly in the demeaning tone which you have adopted, is against the guidelines, which expressly discourage the precise wording you have chosen: https://news.ycombinator.com/newsguidelines.html
It is unfortunate and a bit weird that the author referred to the condition with that phrase; doctors and patients are trying to deprecate the term, as it leads to the whole thing not being taken seriously.
The preferred term is "myalgic encephalitis." My girlfriend has it. Roughly put, it's an ongoing brain chronic brain inflammation that leaves her incapacitated for roughly 17 hours a day. She's not "sleepy" or "lazy," she has a fever in her brain and it can't be cured and it's a horrid situation.
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.
Totally psychosomatic.
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
Prove it
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.
What a load of unsubstantiated claims. I'm pretty sure things like cancer don't have a psychic component to them (unless you define the psychic component as being depressed because you are about to die).
The rest of your post is not even wrong.
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
I notice in myself that I often get a sore throat after being stressed and not sleeping enough.
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.
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.
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
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.
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.
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
There's your answer. It was the depletion of your gut microbes that contributed to your fatigue.
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.
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.
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.
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.
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.
As user interpenetrate has articulated in more depth, the error is in the need to identify a single, simple "cause".