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.
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.
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.
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.
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.
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.
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.
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.
>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.
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.
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.
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.
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.)
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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...
Deleted Comment
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 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.
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
Totally psychosomatic.
Dead Comment