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Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome (npr.org)
284 points by iamjeff 11 months ago | hide | past | web | favorite | 172 comments



I looked at the paper and the data is kind of strange. Looking at figure 2, there are a bunch of cytokines that have a nice linear progression with increasing levels corresponding to increasing severity of disease. This seems like solid evidence that more cytokine = bad.

But if you compare with the controls, mild cases of ME/CFS have less than the control, moderate cases have the same as controls, and severe cases have more. This kind of torpedoes any simple explanation of what's going on. The authors discuss this in a kind of hand-wavy way that maybe ME/CFS causes some down-regulation to start with and then the increasing trend is on top of that.

So, I'm not sure what to make of this. It seems useless as a test at this point: "You have totally normal cytokine levels, indicating that you're either healthy or have moderate ME/CFS."


The thing that currently spazs me out is the Simpson Paradox (Yule–Simpson effect)

https://en.wikipedia.org/wiki/Simpson%27s_paradox

In short, if your population has two (or more) diseases with similar enough symptoms that they are grouped together, statistical analysis can and does totally fail. And your experiment will produce garbage.

So what if Chronic Fatigue Syndrome is really caused by a couple of different things, but with converging symptomology. You have a real catch 22 situation. Can't identify the cause of the disease without a consistent experimental group. Can't select a consistent experimental group without a functional test.


Chronic Fatigue Syndrome is a syndrome - ie. "a group of symptoms which consistently occur together". The fact that it's called a syndrome rather than a disease is a recognition that it's not understood and may be in fact a grouping of different diseases with similar symptoms.


That's a very good point. The paper suggests that "severity may be a key variable for subgrouping ME/CFS." So it's possible that there are three different ME/CFS diseases that can be distinguished by cytokine levels. Hopefully once these are separated, statistical analysis will succeed and medical progress would follow.

In the bigger picture, you have to wonder how many things that we currently categorize as one disease are really many different diseases. (Like how in the 1800s, people would die of "a fever" but we now know there are many different diseases causing fevers.) It's kind of a cliche now that cancer is not a single disease. I expect conditions such as autism and schizophrenia will fragment once the right tests are available. What else?


> how many things that we currently categorize as one disease are really many different diseases.

Had a GI doctor tell me he thinks there are 'lots' of gastrointestinal syndromes that medicine has no way to identify. Also have read an epidemiologist years ago that wrote there are probably a lot more infectious diseases out there. Some of which may have serious long term complications.


Fortunately we have a tool to help on both fronts: metegenomic sequencing. It's only just starting to be used in clinical settings in a non-retrospective way, but many groups are interested in how the gut microbiome (or changes of) can impact the etiology of GI disease. Several pharma startups are looking at therapies for GI disease that rely on changing the gut microbiome, either directly via introduction of new flora (fecal transplant or introduction of tailored microbial cocktails), or via small molecules that can shape the taxonomic distribution. Microbial cultures introduced to the GI tract tend to either die off entirely, or become dominant. It's a bit of an unsolved puzzle why the trend isn't toward plurality. The microbial therapies for C. diff. are one example.

Beyond GI disease there's also indication that the gut microbiome has psychological impact, and metabolic impact. There's a lot we don't know.

Metagenomic sequencing can disentangle the various organisms present in a sample and report all of the taxa present, but the results are only as good/complete as the database used, and unknowns can be a significant slice of the pie.

When our group does deep-enough sequencing and de novo viral genome assembly, we often have enough contigs beyond our organism of interest to assemble genomes for other viruses, and sometimes they are novel. Yes, there are more infectious diseases out there.

A Chinese team exploring the viruses of invertebrates found nearly 1,500 new viruses [1]. That one study expanded the list of known viruses by a significant number, we're talking double-digit percentage change. Many more viruses will be found, and some of them will be pathogenic.

In the (hopefully) near future it will be reasonable (if not yet cost effective) to use tools like high-throughput sequencing to look at everything in a sample, rather than ordering specific assays for individual pathogens. It's a long road until sequencing will be part of the standard of care, but we're in a golden age of biomedical exploration, enabled by sequencing and new molecular methods.

1. http://www.nature.com/nature/journal/v540/n7634/full/nature2...


The opposite may also occur. For example, autism may be CFS, but confined to a specific part of the brain. (This is just an example, not necessarily true of course).


Depression for sure. It's like going to the doctor and being diagnosed with a fever or a tummy ache. Descriptive, but not particularly useful.


Makes me think of Anscombe's Quartet.

https://en.wikipedia.org/wiki/Anscombe%27s_quartet


I love Anscombe's quartet.


It isn't really that much of a problem. If you collect data on a large enough cohort of symptomatic individuals, you can recover separate subtypes through cluster analysis.


Cluster analysis will require thousands of not tens of thousands of cases to study. And since we don't know even how many diseases there are, this will have to be an unsupervised CA, so for each case you'll be looking tens if not hundreds of parameters.

Machine Learning techniques are well suited to crunching this type of data, but don't underestimate the difficulty in collecting so much data.


You don't need thousands of cases, but you probably do need on the order of around a thousand samples. A hundred individuals with ten samples each over time isn't that challenging. I've done it successfully with mouse work at that scale.

I've found that in biological systems, individual variation can be as large as population variation, particularly for something "reactive" like the immune system, which is tied into stress response.


Don't you have to be concerned about differences between the structure of individual variability as opposed to population variability?

Perhaps for the distinctions you are trying to draw it is not an issue?


I haven't found that to be a big issue.

I choose clustering and dimensionality reduction hyperparameters to penalize clusterings with few repeated individuals (high entropy), while trying to maximize the entropy of the distribution of cluster labels.

To prevent cluster count explosion, you can put a regularization term/prior on the total number of clusters. An exponential or gamma with the expectation set to the square root of the number of distinct individuals is a good starting point.

Of course a big part of any analysis is responding to the data, no single approach will work every time.


All sounds very reasonable - thanks for the insight!


Do you know if this has been accounted for with ADHD anxiety and or depression? It has always seemed to me like they represent symptoms rather than the actual cause, especially now that we know serotonin deficiency doesn't cause depression


If someone comes to you with a whole lot of pain and loss of function, ignoring it and thinking it's just in their head/they just need to toughen up and get over it because nothing showed up in thier blood reports is something that is almost ubiquitous in the medical field today. I have a connective tissue disorder that was ignored for years because nothing showed up in my blood report and I looked healthy. There is a reason why people are dysfunctional and in pain and once I got a diagnosis from a very highly respected geneticist, every doctor believes you and then they start helping. Otherwise, many just brush you off or worse, perform a surgery and when you keep coming back due to little change in symptoms you get brushed off so you find another doctor, in their minds they successfully treated you and the same cycle continues until you find a doctor who listens and then the treatment essentially starts.

Glad to see CFS sufferers get some validation as they are ignored plenty of times, especially women sufferers.

Note: I would say 40% of my doctors (I've seen over 50) were not like this and about 20% were over the top amazing. Acccesible through phone or email anytime, personally call you after appointments and intermittently to check up, personally call other doctors to explain issues and follow up treatments, extra long appointments.

Basic message: if someone is in pain/unhealthy there is a reason. Rarely it is psychological but that doesn't mean they should not receive adequate treatment and that doesn't mean you place them in that category unless you rule out plenty of other possibilities


> Rarely it is psychological

"Medically unexplained physical symptoms (MUPS) are physical symptoms for which no relevant organic pathology can be found. MUPS are very common, comprising up to half of all consultations in primary care and up to one third of those in hospital outpatient clinics.1 Some studies indicate higher prevalence; a landmark study of medical outpatients in North America with new complaints of common symptoms such as chest pain, dyspnoea, dizziness, and headache, found that an organic cause was demonstrated in only 16% of cases.

...Although MUPS are a major clinical problem and widely regarded as being difficult to manage,4 sophisticated approaches to management or even recognition of the problem are unusual, especially in hospital medicine." [1]

I do realize that a case being marked as MUPS is not proven to be psychosomatic (psychological). Yet if even a small amount of MUPS cases are correctly diagnosed, there'd probably be enough of them to surpass the term "rare".

Yes, ideally we would run every possible test on any patient that walks in with a stomachache. But there are limits to our economy and to doctors' time. It's a complex problem.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564157/


"Yes, ideally we would run every possible test on any patient that walks in with a stomachache. But there are limits to our economy and to doctors' time. It's a complex problem."

The problem isn't necessarily economical, a lot of those tests are actually very cheap.

The problem is that most tests have high false-positive rates, which you account for by using bayesian inference: the probability of having the disease when you have both symptoms and a positive result on the test, is very high, even if the test itself has a high false-positive rate.

But if you just run all tests in a healthy patient, you'll get back a lot of false positives.

https://people.ucsc.edu/~abrsvn/intro_bayes_1.pdf


This actually depends on how rare the disease is. With a relatively high false positive rate and the disease being quite rare (given symptoms that arguably match), the false positives dominate the true positives anyways.

It does get worse if you run everything on a healthy patient though.. you definitely get back many false positives.


I see. I was wrong to make assumptions about what the limitations are.

Thanks for the link. I wonder how closely doctors follow bayesian inference (and how many know about it). It seems pretty intuitive, so maybe it's already largely applied?


"It seems pretty intuitive, so maybe it's already largely applied?"

It is! That's why doctors don't order every single possible test every time you show up sick!

That's also why consumers SHOULD NOT be testing by themselves without medical supervision (I'm looking at you, Elisabeth Holmes and Theranos).


It is at least implicit in testing practices; the reason diagnosis often involves a series of tests is that they first screen with cheap, low-false-negative testing, then apply more expensive tests to weed out the false positives. But of course the rarer the disease, the harder that second phase becomes.


In one of my courses in medical school, our professor, a physician, told us that many doctors follow Bayesian inference without even realizing, based on their experience and education. The best doctors recognize this ang educate themselves on epidemiological studies to better use tests and procedures and medications to take care of patients most effectively.


I've actually been going through this recently with a series of cancer tests with a high false positive rate. When I was discussing it with my specialist he said that he and other doctors don't necessarily think of it in rigorously Bayesian terms, but they're familiar with the sensitivity and specificity of each test and have a pretty strong understanding of what that means based on priors.

Talking to medical students I get the same impression. The refrain I commonly hear is that high sensitivity tests can rule something out, and a high specificity test can rule it in. Obviously that's a reasonably shallow understanding, but when they combine that with their intuition of a prior it seems like they get pretty good results.


I don't think it's that they get good results, but moreso that it's the conventional wisdom (or "standard of care") and a good mechanism for learning from and properly attributing bad patient outcomes just isn't there. I doubt anybody has told them that their patient died or was given inappropriate treatments because they didn't have the proper appreciation for Bayes theorem, even if it were the root cause. That's just not the culture of medicine today.


The ailments you describe though can certainly be debilitating but require no underlying diagnosis. Me and my mother have horrible migraines, no one knows why but it doesn't matter because I was prescribed a medicine, didn't work. I was prescribed a second one and it worked and it is frustrating and it sucks but quality of life is the same.

For all those ailments, we can treat stomach aches, dizziness, headaches. But when one day you're relatively healthy and 3 months later you can't walk then you NEED a diagnosis. Its like when you get stomach aches vs stomach aches plus throwing up for 99% of the food you eat or bleeding stools and frequent constipation then you get a diagnosis to figure out what is going on, usually a colonoscopy/MRI for IBS or UC.

For most things we don't need a proper diagnosis. A ligament tear grade 1,2,3 can be treated without any radiographs. Often similar conditions can be treated with the same exact splint or therapy. There is no need to further diagnose if quality of life can be the same with less than 6 months of treatment and medications.

But when you can't work or do normal daily life functions al of a sudden, you can't just give up and say too bad. Unfortunately if I had Medicaid that is exactly what would have happened. Doctor classifies it under a broad diagnosis requiring little tests and you're screwed for life. Since I had ppo from work, I went to a bunch of doctors until I got a clear obvious diagnosis. Now that I have a diagnosis I can improve.

Also, if problems aren't certain as they are chronic, widespread or hard to diagnose you see certain specialists who are trained to diagnose. You don't see a general physician


To be clear, I'm not at all saying that false negatives are acceptable. I'm sorry that your migraines went undiagnosed for so long and am happy to hear that you were eventually helped.

I just wanted to point out that it is a complex issue because there most likely are a significant number of patients who have pyschosomatic pain. And because of them it's, unfortunately, difficult to achieve comprehensive testing. (But I don't want to sound like I'm blaming this group very much. Stress can be terrible, especially when it's chronic. Though freeloaders are a different problem..)


> Also, if problems aren't certain as they are chronic, widespread or hard to diagnose you see certain specialists who are trained to diagnose. You don't see a general physician

This is actually (imo) one of the largest failings in the UK's various health systems -- Diagnosticians as you have them in the US, do not exist. The entire system relies on GPs keeping up to date on various diseases and symptoms. This means that a lot of the time diseases that typically present with vague symptoms, like cancer, can go undiagnosed for years.


We have diagnosticians? This is my first time hearing of them so they must be pretty rare.


Would have been nice when one of my family members was in the hospital for 6 months. Maybe he was talking about Dr. House?


> Doctor classifies it under a broad diagnosis requiring little tests and you're screwed for life.

I don't understand. Can you clarify what you're saying?


A stomachache is hardly the same as years of debilitating pain and fatigue. One might think a chronic condition that presents consistently enough in type of symptoms across more than a million patients may be worth considering as possibly physiological in nature. Certainly this team at Stanford believed so.

The symptoms of this syndrome include pain, dizziness, and headache so that's three of the four you mentioned. The very story is about how this syndrome is often not diagnosed properly. That means that some portion of MUPS may be explained with the tests the team at Stanford is developing.

Just dismissing it because there's not yet a great test is the problem they're trying to solve.


The commenter to which I replied seemed to be extrapolating the idea past Chronic Fatigue Syndrome to all cases where patients are not successfully diagnosed for reported pain. Thus my argument was not specific to CFS.

I agree that it seems unlikely for years of fatigue to be psychosomatic, but we won't know the numbers until there is a test.


When you have chest pain you better get to a doctor, it might be a heart attack. Most chest pain is not a heart attack, but only a doctor can tell. Thus I expect most people to run to the doctor over "nothing": it probably is nothing but you need to verify that.


also, psychological illness can be just as devastating and debilitating as physical illness.

OCD for example leads to years of life lost to disability.

I don't think the CFS crowd realise how fucking annoying they are when they dismiss psychological illness as "all in your head".


That is a pretty sweeping generalization to make. I've been sick with ME/CFS for several years now and I've never come across another patient dismissing psychological illness as not debilitating. Instead, many that I know have premorbid or comorbid psychological illness and know firsthand how debilitating psychological illness is.

If a person with OCD was told that their illness was due to poor lifestyle choices and that they could be cured of their OCD if they just stop believing they have OCD and that they just need to get to sleep on time and get a bit of exercise, they would probably not appreciate that. This is how people with ME/CFS are treated by many health professionals and medical researchers. There is a large and influential group of psychiatrists that posit that the disease is caused by nothing more than the belief that you have a disease. This is why there is seemingly an intense backlash against psychiatry and a frantic hunt for biomedical proof in ME/CFS.


Unfortunately, CFS is not the only illness whose existence the medical profession generally refuses to admit. There are a host of other syndromes or symptom constellations that doctors can't find markers of and thus call psychosomatic. Generally, people suffering from these conditions congregate on message boards where they develop a culture and community. Sometimes this is truly productive research sharing and emotional support and sometimes it promotes alternative treatments of dubious efficacy and speculative science based on amateur readings of research. What's really overwhelming is the disconnect between the medical profession and the people they exist to serve. These people need help and yet doctors seem to push them away because doctors are too uncomfortable with a state of not knowing or not understanding.


At some point you start edging out of the realm of medicine and into the realm of expectations.

So you're feeling bad, and you go to the doctor. The doctor listens to your symptoms, and does some tests -- blood tests, MRIs, listening to your chest, whatever -- for the most common causes. They come back negative. So he talks to some colleagues, reads his old reference books, Googles around a little, and comes up with a longer tail list of possibilities. Runs some more tests, they come back negative.

Now what?

Well, what do you want to happen? The doctor doesn't know what's wrong with you. Maybe someone else does; do you want the doctor to refer you to someone else who might be able to figure you out? Maybe no one does; there's a lot of things that go wrong with people and we haven't even identified them all yet, let alone figured out any sort of treatment.

A lot of people really, really just want a name for what's wrong with them. So you take a constellation of symptoms and slap a name on it, like CFS. But does that help? With no known underlying cause, CFS is as likely to be a variety of different problems, with similar, overlapping symptoms, as it is to be a single disease or condition. Some people "diagnosed" with CFS may actually have the same, currently-unidentified problem; some may have a different problem; some may have an atypical presentation of a disease or condition that we know about, and can treat.

That last one is especially troubling: by labeling a constellation of symptoms, you have created a monolithic condition, in peoples' minds. If you tell someone they have CFS, because they match the constellation of conditions, they will stop looking for any other answer. If what they actually have is an atypical presentation of a known condition, they might never be diagnosed with it, because they miss the significance of new symptoms as the condition progresses.

That's why a lot of good doctors treat unknown conditions in such a way so many patients find so unsatisfying. They rule out the likely problems, make sure you don't have anything unlikely that would kill you if left untreated, and then ... wait for more information. Wait for you to develop new symptoms, wait for new well-defined diseases to be discovered, and try to manage the symptoms as best they can be.


This is why, as someone with a mild case of this illness, I greatly prefer the recently suggested name "Systemic Exertion Intolerance Disease". At the very least, it is a more precise description of the most distinctive attribute of the illness: that for someone with it, overexertion causes a particular cluster of symptoms: headache, brain fog, general malaise. (Those symptoms are nonspecific by themselves, of course, but they way they show up after overexertion -- often hours later -- is, AFAIK, unique to this disease. The threshold of overexertion varies from person to person and perhaps even from day to day.)

I think you're probably right that there people with other conditions, which present somewhat similarly, who get diagnosed with CFS even though their condition has a different cause from what I have. I'm not even sure that fibromyalgia, often discussed in the same breath with CFS, is the same illness I have (I've never had muscle pain with this).

I don't have a problem with doctors saying they don't know what they can do and waiting for more information. It's the ones who can't admit they don't know, and therefore say it must be psychosomatic and should be treated with antidepressants, that I have trouble with. Fortunately my doctor never did that.


Generally the solution is to come up with a descriptor like "Irritable Bowel Syndrome" or "Ideopathic XYZ" - these labels basically say that "you have some of so-and-so set of commonly co-morbid symptoms and we can't pin down a cause in your case". Not useful for cures, but useful for lumping together research projects and for managing symptoms. "Chronic Fatigue Syndrome" is one such label, and may be a cluster of diseases that present similarly.

The problem is when doctors and researchers lump these things into the "crazy patient" bin and time spent helping these patients as wastes of their time, rather than just hard cases.


> Well, what do you want to happen? The doctor doesn't know what's wrong with you. Maybe someone else does; do you want the doctor to refer you to someone else who might be able to figure you out? Maybe no one does; there's a lot of things that go wrong with people and we haven't even identified them all yet, let alone figured out any sort of treatment.

I think the thing that I see missing most in medical treatment is a sense of empiricism. That's part of why I really value my doctor - he's less about "what particular disorder", and more about "how is your quality of life?"

If I go to him with a particular problem, we focus on that problem, but he's always referencing back to overall quality of life and management, rather than "fixing a problem" and walking away. Every time I see him there's a recheck on any existing or recently addressed problems, and usually a screening for something that they're trying to reduce on a patient-population basis (alcoholism, for example)


> A lot of people really, really just want a name for what's wrong with them. So you take a constellation of symptoms and slap a name on it, like CFS. But does that help?

I don't know that that is really all people want. But even the name itself is helpful, yes -- it gives you something you look up and understand what is happening to you, it helps you find and connect with others, and for practical purposes (say, negotiating reasonable accommodations at work) being able to name a disease you've been diagnosed with is obviously helpful.


>and slap a name on it, like CFS. But does that help?

If after 10+ years of being told there's nothing wrong with you while struggling with every aspect of life, and as it opens up the possibility of getting financial assistance from the state - yes. It helps immensely.


That's not being particularly generous. If there is no evidence of a physical problem, you get kind of stuck. Doctors have tried hard to find a physical cause for a number of these illness.

As an example, the CDC spent years investigating Delusional Parasitosis, despite evidence it was mental illness, precisely because the sufferers were so insistent they were truly sick (See bottom of https://en.wikipedia.org/wiki/Delusional_parasitosis). They didn't find anything, and the treatment remains antipsychotics, which do appear to work.


MD's are by and large incredibly non-curious about hard-to-diagnose chronic conditions


Because as a society we can't spend ten million dollars on every patient with a hard-to-diagnose chronic condition that may just be stress. It just isn't practical.


Stress can show up as chronic cortisol elevation which is not an expensive test. Instead we get the cheapest cure of all: gaslighting.


That's just false, and pretty insulting to the medical establishment.


It’s false that cortisol can be easily tested? Or it’s false that many doctors tell patients that their unexplained symptoms are probably just psychosomatic and they should try to reduce stress, as a way of getting them to go away and stop asking for diagnostic efforts beyond the doctor’s current level of expertise?

I’ve experienced the latter first hand, and know many other people who have also, none of whom were chronically stressed in any kind of unusual way, as far as I could tell.

Maybe “gaslighting” is a slightly unfair name. I would describe it more along the lines of “patronizing indifference”.


As insulting as this may be to some doctors, perhaps the ones who care, it is exactly what most patients of hard to diagnose problems experience most of the time. I've seen many doctors with my girlfriend who suffers from CFS.

Patronizing indifference describes it quite well. They may run a few tests, then come up with nothing and insult you with the dumbest things.. Its especially bad when you go back multiple times and know more about the disease than they do, and the state of the research (this without spending an obsessive amount of time looking into things).

People's lives are totally ruined by this condition. Other diseases where you may experience pain, or discomfort, or reduced mobility, you may still be able to fight through the pain and achieve life goals. With CFS, the harder you fight, the harder you lose. You can go from being an extremely high achiever who works 3 times as hard as everyone else to get there to then being powerless over your own life, career, etc. The harder you try, the harder you fall. You have to learn to do little every day and hope that you're lucky enough that it'll lead you somewhere, or that some day, something will be discovered and it may help your condition.

The worse part is in many places, you get no help.. You may `appear` fine on the day you go in to the doctor, because it was the only thing you did that day and took it easy the day before because you wanted to at least make it to the doctor. Then they don't get it. Or they'll suggest you exercise, as if that makes your CFS better. Nope.. Because if you go at it a bit (10-15 minutes of light cardio) then you're out of commission for a few days, leaving you feeling pathetic and useless as your loved ones pick up the slack and try to provide you with everything you need and not make you feel guilty, while all you wish to do is get up and do chores or your part, or work, or anything productive, to feel alive, to feel like you're useful at something, have a purpose.

But nope. While there is research happening, the general medical community doesn't recognize CFS for what it is and the systems around it which should offer support don't exactly recognize it either. You're more likely to be referred to a therapist to go do some damn CBT than you are to get help. Telling that to someone who has a degree in psych who's done CBT and has CFS and knows the whole thing inside out is pretty demeaning and discouraging.

Anyway.. rant over.. but yeah, patronizing indifference. Hit it on the nail.


Not op but cortisol is elevated in "just stress" as well as critical illness. An elevated cortisol is not a diagnostic test that can deferentiate between a serious medical problem and stress.


Also, cortisol isn't always elevated when stress is the problem. So a negative test result doesn't really tell you anything, and a positive test result tells you something, but you don't know what that something is without a lot more testing, which may or may not tell you anything.


I find it hard to look at American medicine and conclude that reasoned, careful rationing of costs is actually a factor.


You don't maximize profit by spending more than 15 minutes on each patient. That is how American medicine is reasoned. Time is money and medical mysteries are a waste of time.


You can certainly bill for running a lot of tests.


Nah, it's because a doctor can't spend ten minutes thinking about what's going on with a patient, much less a couple of hours. This is what we got from our lame attempt to shoehorn health care into the commodity business model we use to manage fast food joints.


That sure does leave a lot of middle ground with doing nothing.


There is. They don't do nothing. They run some basic metabolic tests. If there's something specific (like you have pain in a particular place) they'll run more tests.

But when your complaint is something like "I don't have any energy", there are just too many branches in the decision tree. They need more to go on.


How did you get there from my comment?


What incentive do they have besides being a heroic, indefatigable person? If anything, they're increasing their attack surface for being blamed or sued.


Curious about this. I often find engineers motivated purely by the desire to solve the problem. Was just at defcon - witnessed many people vaguely wandering around the tables of teams trying to hack devices, then getting sucked in as they offered solutions and inevitably got involved with trying to solve the problem. Did it myself a couple times, even though I had planned on attending more talks.


They hate solving problems when someone comes up to them with a strange and incomplete description and says "can you fix my problem"? The made a whole show about this called the IT Crowd where they play a tape that says "Have you tried turning it on and off again" instead of legitimately answering phones.

https://en.wikipedia.org/wiki/The_IT_Crowd

Here's a subreddit where people complain about the problems that people bring them: https://www.reddit.com/r/talesfromtechsupport/

Here's a subreddit for which the tagline starts with "Tired of stupid customers?": https://www.reddit.com/r/iiiiiiitttttttttttt/

There are many problems in the tech field which are exceedingly difficult yet uninteresting. There are many problems that people bring that are vague descriptions that eventually turn out to be user error. It would not be surprising for the same phenomenon to exist in the medical field as well.


Huh, I had never thought of that - the daily issues that patients bring a doctor I can see as a parallel to an engineer being presented with "can you fix my email?" - complete with user stupidity - "My heart don't feel good" "Did you quit smoking and start exercising like I told you to?" "No."


The human body apparently has pretty terrible UI/UX.


It's not bad for something we found in a cave.


I've wondered the same thing myself pretty much every time I've come into contact with a doctor. The fundamental lack of curiosity for someone in a field related to science (seemingly based on science) is astonishing.


That has never been my experience with any doctor, and I have met many doctors of many different specialties.

Perhaps the problem here is not doctors, but the way you are communicating (or not) with them. Your sotto-voce "seemingly based on science" is exceedingly derisive; perhaps that is carrying across. I too tend to minimise the length of conversations with people that treat me with contempt.


Yes, you could potentially "solve the problem." Unless there is a test or a treatment that is easy and effictive enough to use empirically it is much harder to diagnose that person. Physicians have to balance quality of life improvement for patients along with treatment. There may be a trade-off between efficacy rate of treatments and the likelihood of adequate compliance. People may not change their diets or take their meds appropriately to improve their health for example.

If you can't rely on the patient you might never find the solution. You may just be better off at improving their quality of life even if it doesn't ultimately solve their underlying condition.


So are programmers by and large incredibly non-curious about learning completely new stuff they will probably not even use so much, and for which they could make solutions with the tools they have.

It's a job like any other. Some people don't want to go the extra mile because they have other priorities in life.


I found seeking treatment for RSI pretty frustrating until I went to an occupational therapist.


> if someone is in pain/unhealthy there is a reason. Rarely it is psychological

Work in medicine, and you'll find a lot of malingerers. Some of them don't even realise that they're faking it. Yes, it sucks from your point of view that no-one believes you, but from the other side, a lot of people fake it, and you have to sort out what's actually going on.

https://en.wikipedia.org/wiki/Munchausen_syndrome

https://en.wikipedia.org/wiki/Munchausen_syndrome_by_proxy

I used to be a neuro tech and have done a lot of EEGs in my time. There are enough people faking seizures to make it a non-trivial issue. Munchausen-by-proxy is a particularly sad problem, where parents make their kids sick in order to get some attention or compassion from others.


How do people fake seizures? Do they just flop around on the ground?


They just shake their limbs back and forth or their body. It's pretty easy for anyone familiar with seizures to tell a fake, since most fakers shake their limbs back and forth evenly - a sort of even sawtooth pattern of movement. However, jerky movement in seizures is contraction-relax-contraction-relax, contracting in one direction only, not back-and-forth jerking. People also aren't conscious during full-body seizures (though they are if it's partial-body), so if they're looking around focusing on things, looking at your response, or talking, that's a giveaway.

One point to note, though, is that you can't just assume that everyone faking a seizure doesn't have epilepsy. Quite a lot of fakers do, and they fake for different reasons. A lot like the attention they get after a seizure. Others come in to have an EEG and think that they need to have a seizure to help the diagnosis, so they 'help out' with good intentions (not common, but common enough). Very very rarely you might encounter a real seizure that looks like a fake, though these are generally other kinds of seizures (various kinds of 'partial' seizures), not the full-body-shaking ones.


Wow, interesting. Thanks for sharing your experiences.


It's probably not dismissal in the sense that they don't believe you. It's dismissal in the sense that they can't treat something effectively without a diagnosis.


I'm glad you finally got some help. What was the name of the disease you were eventually diagnosed with?


I find it amusing that one can so easily make an analogy with what you just described and the debugging of heisenbugs. How often do we as computer practitioners dismiss off user pains as just works for me and they are not-using-the-system-correctly?


The article is here: http://www.pnas.org/content/early/2017/07/25/1710519114.full...

It's worth noting that their false discovery rate was not study-wide, but rather group-wide. As they state at the very end of the paper, "FDR control was performed separately by group (e.g., severity level) to allow for group differences in the proportions of truly null hypotheses". So, if you try to look at all significant P-values, after adjustment, you'll find that for that purpose, the P-value significance is going to be inflated.


It's also worth noting that there is no clear causal relationship. There is a strong and well-established association between depression and inflammatory biomarkers, but we have very little idea of whether depression increases the risk of inflammatory illness or vice-versa.

http://www.mdedge.com/currentpsychiatry/article/76288/depres...


The research I'm familiar with (and teach) suggests you see associations prospectively in both directions, but no clear evidence of causality (although I've grown skeptical of causality as a concept).

This PNAS paper is nice to see, although as some are pointing out, there's a bit of p-hacking probably going on.

My sense is that certain research topics are kind of ground zero in this misled, outdated mind-body war. So you see people trying to demonstrate something along the lines of "see here, there's a biological basis to this, so patients aren't just inventing this," as if the psychosomatic conceptualization of the problem was ever just "inventing it," and as if people with psychogenic psychosomatic problems can't mimic the same things in their subjective reports (what happens when you do have this cytokine screen, and you still have people who look normal on that?)

As you're alluding to here, the problem is that even if you do find inflammation markers it's difficult to tell if this is due to stress in a broad sense, and how these markers relate to perceptions of stress across a broad range of individuals.

Just to take an example: how do these markers look in psychiatric patients who don't report CFS symptoms? I don't mean to suggest that these individuals have psychiatric problems, but it's unclear to me from this study what is going on with these inflammatory markers.

Let's say these cytokines do cause increased pain and fatigue experience. Do CFS patients have a stronger relationship between those inflammatory markers and experienced pain? If so, what does that mean?

The paper itself is more appropriate in tone than the NPR article, for what it's worth.


I am at the half of this long thread, comments are incredibly good and interesting --even for HN-- but yours seems to me outstanding. Thanks for taking the time to write it.


Many CFS studies use patients with depression as a control for the very reasons you have suggested.


You'd think the answer would be easy to figure out. If you successfully treat the inflammatory illness, does the depression go away?


The answer to that question just muddies the waters further. Anti-inflammatory drugs have been shown to have some anti-depressant effect, while anti-depressant drugs have been shown to have some anti-inflammatory effect. In both cases, the effect size is fairly small.

It would be nice to find a simple cure for a complex and diffuse set of symptoms, but we haven't had any luck so far. In all likelihood there are multiple interacting factors that affect the progression of depressive disorders, with no singular cause.

http://www.nature.com/mp/journal/vaop/ncurrent/full/mp201616... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3194072/


> If you successfully treat the inflammatory illness

How do you know you completely succeeded?


This is not my field, but you can measure inflammation a couple of ways. One is by quantifying cytokines present and another one is to count blood cells.


If you follow their methods, specifically [63], they are modelling the proportion of null hypotheses in their tests. Performing FDR by group is a reasonable approach, and does not necessarily cause P-value inflation. This is different from a Bonferroni correction, in which total numbers of tests done is the only factor. These FDR models of the proportion of null hypotheses rely on the distribution of p-values, not their raw count (assuming a sufficient count of P-values is present in which to model). Dividing the FDR correction as they did provides more information about group-specific influences, and should not be considered p-value hacking.

Nevertheless, thank you for calling this out. There is way too much p-hacking in science, especially biology.

[63] Benjamini Y, Krieger AM, Yekutieli D (2006) Adaptive linear step-up procedures that control the false discovery rate. Biometrika 93:491–507.


Right. My point is actually that they're doing an FDR within each group, not across the whole study. So, the adjusted P values are accurate within each group, but to look globally, you either need to then Bonferroni or re-perform the FDR globally. I'm not saying that my point is in disagreement with yours, by the way, I'm just trying to clarify that my point is independent of whether they had done in-group FDR or in-group Bonferroni.

I actually built an online FDR calculator previously, since I enjoy the topic so much: https://tools.carbocation.com/FDR


Also, might be of interest to head over to the supplemental information: http://www.pnas.org/content/suppl/2017/07/25/1710519114.DCSu...

...p. 4 esp: 1) Analysis of ME/CFS Cases vs. Healthy Controls (case versus control means comparisons): We employed pseudo-likelihood ratio testing (8)2 to compare pMFI means between a) each disease severity group versus control and b) the equally-weighted average across all three severity groups versus control.


There are an awful lot of online discussion groups for various medical problems. It is not uncommon for members to share new research in hopes of better understanding their own condition. In some cases, they are pursuing alternative remedies because conventional treatment and proven science are failing them so badly. Getting solid information about what is likely actually happening in their own body can be empowering.

It isn't the sort of thing most policy makers or business makers want to hear. People in such positions tend to be incredibly controlling and actively against the idea of empowering patients to take better care of themselves through better understanding of their condition. But it is actually a low cost, effective way to get better quality of life in the face of coping with a chronic, likely incurable, condition.

Written in reply to this, which is now dead, so I cant post it there: https://news.ycombinator.com/item?id=14896446


There seems to be a desire evident in the commentary on this topic to categorise CFS as either completely psychological, or completely physiological.

My own experience, having had the condition for much of the past 10 years, and having (after many years of frustration) found treatment methods that have enabled me to achieve almost full recovery, is that it is very much both physiological and psychological, and that only by treating the mind and the body together can full recovery be achieved.

Whilst many people will want to read this study as evidence that CFS is fundamentally physiological in nature, it doesn't do anything to dismiss the role of psychology as a causal or perpetuating factor. It is equivalent to using a lab test indicating (for example) imbalances of serotonin as evidence of depression, without taking into account the many years of stress and trauma that may have led up to the issue manifesting as a physiological (and debilitating psychological) condition.

Whilst I have no doubt there is scope to develop treatments that can ease CFS sufferers' physiological symptoms, and I hope research findings like this can help to bring about these kinds of breakthroughs, I have no expectation that a comprehensive remedy for CFS can be found that doesn't include profound psychological healing as a key part of the treatment.

It also occurs to me that a major reason why this condition continues to evade explanation and treatment by mainstream medicine, is that the profession is unaccustomed to looking at things as both psychological and physiological in nature, and that it will take a change in mindset on this to pave the way to discovering effective treatments for CFS and other such "mysterious" conditions.


My experience, having fully recovered, is similar, and it fits with what we know about how the brain works.


What treatments did you discover?


As someone who has suffered from CFS I am so happy to see it becoming more recognized and understood. You see, the frustrating part of having an illness like this is it is not well known enough for people to really understand it, but it has major impacts on your life. I can't tell you how utterly angring it is to be sitting in front of my computer and I know that if I just finish this school paper that isn't anything that hard, I can go to that social event, but I just am so tired I can't do it.


As someone whose symptoms fits the bill, how did you get diagnosed and how did you get it under control?


Be careful, those symptoms are also for a lot of other things including depression and burnout which are far more common amongst programmers.

Do get diagnosed and get a second opinion, but it might or might not be CFS.


I can only hope/wish for some advancement in CFS/ME.. Having a loved one who has it makes you see how hopeless many people have been for so long and how little the healthcare system has been able to help. Really hope to see change soon.


Yes, at the moment doctors aren't really much help. However there are various things you can do yourself as a CFS patient to improve things, and possibly recover.

I suffered from CFS myself and recovered about 17 years ago (with no relapses since), so it is possible.


Some commentary on this study by experts:

http://www.sciencemediacentre.org/expert-reaction-to-cytokin...

In summary:

- it's quite overhyped.

- we already knew that TGF-B was elevated in patients.

- as TGF-B wasn't increased after exercise, that puts into question how relevant it is as a biomarker, as symptoms tend to increase after exercise.

- it doesn't give any indication as to whether the illness is organic or psychological, as both depression and lack of sleep cause inflammation.


Does anyone have more information on this topic? I am never sure if this is snake oil market or not.


I'm not sure if it's me or the article, but something about reading it just made me really tired. More so than, say, Javascript fatigue. Which is interesting, because usually that's my limit.


If you're feeling fatigued, try Calcium and Magnesium supplements. They're cheap and safe and you might simply have a lack of minerals that doesn't show up in blood tests. That's what it was for me anyway. From chronic fatigue to normal life - it feels like I took 15 years off. Calcium relieves muscle pains, Magnesium improves sleep and reduces stress. They can also have a laxative effect.


Surprised no one has mentioned a Keto diet yet as a potential remedy for CFS. One of the biggest benefits of Keto is its anti-inflammatory effects.

A quick Google search brings up at least a few research papers showing that Ketogenic diets have been seen to suppress the expression of inflammatory cytokines.


Just saw your other carbs comment, I agree. I've seen first hand the great improvements with Keto, but it's a very difficult diet to get into with the subsidies carb-heavy foods receive.


Here is why CFS research is so difficult:

https://news.ycombinator.com/item?id=14896929


"Do you know what they call 'alternative medicine' that's been proved to work? Medicine." - Tim Minchin, Storm, 2008.

Should you trust an authority? That is always a personal decision. I try not to, but I will listen to someone with credentials and give weight to their knowledge and experience. Online randoms describing an "alternative" are not challenging authority or bypassing it: no matter how they try to frame it, they are trying on the mantle of authority itself, but with no foundation.

Your assertion that "policy makers" are systematically withholding "solid information about your body" is paranoid nonsense.

If you want to go study the systems of your body, all the world's medical information is publicly available. There's a reason a medical degree takes seven years or more, however: the body of knowledge is vast and interconnected. It's not withheld, it's just a much greater challenge than many of us are willing to undertake.

Online forums may be a source of good advice and anecdotal suggestions, but they also give false hope to the desperate, and thereby open the window to perpetuating snake oil and quackery and delusional magical thinking. At their worst, this amounts to conducting uncontrolled medical experiments on other human beings who are only willing because they are desperate - and that's close to evil in my book.


We detached this subthread from https://news.ycombinator.com/item?id=14896531 and marked it off-topic.


> "Do you know what they call 'alternative medicine' that's been proved to work? Medicine." - Tim Minchin, Storm, 2008

I've been a big fan of Tim Minchin's, and thanks to living in one of the cities where he built much of his early fame, I've seen and enjoyed much of his work.

But I feel like a form of Godwin's Law should apply to this quote.

It's been done to death, it contributes nothing of value to the discussions in which it is cited, it minimises and trivialises the horrible predicament of people (like myself) who experience illnesses that mainstream medicine can't/won't recognise or treat, and serves only to promote a sense of smugness among people who think they have mainstream medical science on their side.

The point that people sharing this quote don't understand is this: For mainstream medical science to 'prove' something to work, it requires huge commercial and/or political incentives to do the research. If a pharmaceutical company or research institution can't reasonably expect a study to result in the development of a drug that can yield hundreds of millions or billions of dollars, it doesn't get done. That leads to a vast gap between what has been "proved to work" and what can actually work for people who take matters into their own hands, as I've done very successfully.

It's notable that all the comments here seeking to refute Mz's comment are doing so by exaggerating or outright misquoting what she said.


This is not true. The medical field does a lot of research which is totally unrelated to drug development. Pick up a random collection of medical journals and look for yourself.


Indeed, I neglected to mention the other main motivator for undertaking research: to be published in journals. Thanks for pointing it out.

Seriously though, can you not see how the medical research system (and most importantly, the kinds of things that will be included in studies) is influenced by the fact that any study must seek to deliver on a commercial incentive, a political one, or at the very least, be likely to published in a reputable journal [1]?

[1] Incidentally, this is also, indirectly, a commercial incentive, given that journal publications are used as a key metric for ranking research universities internationally, which has a major bearing on funding.


If the research isn't worth publishing in a reputable journal then it probably isn't worth doing. I'm not sure what point you're trying to make.


The point is that this qualifier - that research must be "worth publishing in a reputable journal" - imposes significant constraints on what kind of research may be attempted to begin with.

An hypothesis that is too far outside of mainstream accepted thinking may not be studied, if it seems (to the people proposing the study or the people considering funding it) like it will be too hard to get it through peer review or editorial review.

I'm not suggesting this is necessarily a flaw in the system; it is healthy that there are constraints on what kind of research gets funded, and for things that are way outside of established thinking, the bar should be higher [1].

But it does mean there will inevitably be a gap - quite possibly a very big gap - between what has been "proved to work" and what can be effective for those who want or need (like myself) to take matters into their own hands.

[1] Problems like politicisation, egotism and bullying are often said to be rife in scientific research institutions, so it's questionable whether the system is as healthy as it could be, but that's a separate discussion.


Hand wavy recollection of what a very knowledgeable cancer patient told me years ago: They were incredibly frustrated that most cancer research related to the type of cancer they had was variations on the same thing because it was the trendy thing to fund. This person was hoping for real progress, but was seeing just dozens of studies of the same thing with minor variations and nothing actually interesting or really new being done.


That could just as well be confusing cause and effect. Particular avenues of research can capture a lot of funding and become trendy because they seem most promising at the time. Hard decisions also have to be made on risk versus reward; should we shoot for the moon or target limited incremental progress? It's easy to criticize after the fact with the benefit of hindsight.


The individual in question worked for a major health organization themselves. I don't think they were confusing anything.


> I feel like a form of Godwin's Law should apply to this quote.

I would liken it more to the "nothing to hide" argument or "it's what plants crave." Some things actually are Nazi-like even if it's cliche to point it out. Whereas the Minchin quote is just something that people mindlessly repeat, seemingly detached from any sort of objective reality.


On the contrary, I shared this quote having full knowledge of the cost and complexity and political barriers, having both studied the industry academically and being personally close to medical practitioners engaged in the research and implementation of new treatments.

I think all suggestion of "alternative remedies" is dangerous, since it opens the door to those preying on desperation to sell false hope. I have an active dislike of the phrase, because it fails to capture just how harmful they can be, and how rarely they are actual remedies. "Unproven interventions" might be a better name.

More precisely, they also serve to mask those treatments deserving of more research that might actually have some potential, because such signal is lost in the torrential noise of snake oil and quackery.

I join your criticism of the externalities in the US market-led system that incentivise research into drugs of symptomatic relief rather than cures.

Nevertheless I believe that is a short-term systemic malfunction, and in any event is not a severe problem elsewhere where drug pricing is regulated. Large amounts of money and time are routinely allocated around the world for fundamental research into many difficult and poorly understood conditions. Pointing out that medicine can't treat everything is fine, because if it could we wouldn't need more research. But claiming the research doesn't get done, that's simply untrue.


I think all suggestion of "alternative remedies" is dangerous, since it opens the door to those preying on desperation to sell false hope.

I'm with you on practitioners who charge thousands of dollars offering to cure terminal cancer with carrot juice and coffee enemas. But this is a very small segment of the industry, and from what I've seen, anyone who does that for any amount of time gets regulated or shamed out of business.

Most natural health practice is nothing of that sort. It's things like diet/nutrition, exercise, stress/trauma therapy; all things that have significant evidence of being beneficial.

All the treatments I've tried in my journey to get well fit into this category: low-risk treatments for non-life-threatening conditions, that just support the mind and body to heal and strengthen naturally over the long term. I've been doing it for nearly 10 years and in that time my life has utterly transformed.

Do you have any objection to this that doesn't rely on dismissing every health provider without a medical degree as a dangerous charlatan?


Most natural health practice is nothing of that sort. It's things like diet/nutrition, exercise, stress/trauma therapy; all things that have significant evidence of being beneficial.

All the treatments I've tried in my journey to get well fit into this category: low-risk treatments for non-life-threatening conditions, that just support the mind and body to heal and strengthen naturally over the long term.

This has been my experience as well. MCT oil has long been medically recommended (i.e. by actual doctors) for serious gut issues, such as stomach cancer and cystic fibrosis. It is not routinely recommended by doctors as a standard treatment for CF, but it is popular in the CF community. It isn't not a drug. It is not an unproven treatment. It has a solid track record.

But, it seems to not be actively promoted in part because it isn't a drug. It is cheap and effective, but no miracle cure.

What gets actively touted are new drugs that cost $250k or more annually and are only effective on about 5 percent of patients.

There is no big fortune to be made in telling seriously ill people "If you eat better and avoid triggers, you can have higher quality of life, need fewer drugs, etc." There is a huge fortune to be made on these extremely niche drugs with insane price tags. So, doctors and other business people often promote the things that are lining their pockets, rather than the things that help patients improve their quality of life at little cost and low risk.


Nutrition. Exercise. Stress management. I think these are mainstream health practices.

There are practitioners with other qualifications. Although I've met physios with some peculiar ideas that subsequently turned out to be have a very high proportion of adverse effects (e.g. spinal adjustments).

My message is consistent, I hope: try what you will, but never pretend to expertise, and steer clear of recommending or suggesting anything to anyone, because at that moment one becomes a snake-oil peddler and are risking harm to someone else. Recognise that even medical practitioners are taught not to treat themselves or family because you cannot, cannot be objective about it.

I do not express an opinion on your personal journey, except to say that despite not knowing you from Adam it's still gladdening to learn that you are feeling better.


...except to say that despite not knowing you from Adam it's still gladdening to learn that you are feeling better.

Thanks for the constructive comment.

I would urge you to examine your own conduct in this thread however, particularly towards Mz.

You really do seem to be waging war against a straw man, and expressing fears about risks and dangers that everyone like myself and Mz are well-and-truly aware of and cautious to avoid.

I'm sure you are sincere in your belief that you are well-intentioned.

But in your quest to protect unwitting victims of snake-oil-touting charlatans, you end up being a bully towards people who have experiences and insights that you don't have, and infantilising people who are mature and educated enough to do their own research and make their own decisions.

Like I said, I'm sure your heart is in the right place. But you'd do well to be more considerate toward others' experiences and perspectives, and charitable in your reading of different opinions on issues of such importance.


Nutrition. Exercise. Stress management. I think these are mainstream health practices.

If you have a very serious medical condition, like cancer, and you talk to a doctor about things like taking vitamins, most of them will pooh-pooh it as if any impact it has is merely a placebo effect. Using nutrition, exercise and stress management as part of your defense in the face of something that doctors don't really know how to treat gets dismissed and attacked and basically lumped in with snake oil. In fact, you are basically doing this yourself with your wild misquotes of people here in service of some agenda that has nothing whatsoever to do with trying to comprehend anything being said here, as best I can tell.


Are there any specific vitamins which have been shown effective in treating cancer or other serious conditions? In general research into vitamin supplements hasn't shown any benefits, at least not for people with working digestive systems who eat proper balanced diets.


A relative was diagnosed with dementia and the doctor recommended all 3 of these things. I agree they are mainstream. Of course he's not going to say they'll cure it or cancer because there isn't evidence of that.


I am not surprised that you dislike that I have rebutted your remarks. Nevertheless, when I quote you, it is practically cut-and-paste.

Mz, I think your comments in particular in this thread have been worthy of such strongly worded reprimand because they could lead others to attempt self-treatment and to disregard medical advice.

The fact that you've done so by misrepresenting the character, motives, competence and behaviour of practitioners is something I take further umbrage at.


When you misquote me and then wildly twist my meaning, with zero intent whatsoever to actually have any respect for me or understand anything I am saying, yes, you very selectively cut and paste in order to try to make it say whatever meaning you are attempting to force upon my words.


IMO, it's an unhelpful quote because it's only useful for alternative 'treatments' that have been shown not to work (beyond placebo). It largely ignores the fairly large gray area of treatments that have shown promise but haven't been extensively studied enough to become part of mainstream medical practice. If no other treatments are available, investigating these options may be a perfectly rational thing to do (with the appropriate input from a genuine medical professional, not a random/unqualified 'alternative' practitioner).

Personally, I use caffeine, in addition to an SSRI, as an OCD treatment, based on a single, small (n=12 for the caffeine group)[0] clinical trial. Clearly the evidence isn't there to declare it a viable treatment -- it could easily be placebo[1] and/or prove to be detrimental for other patients -- but my doctor and I concluded that the risk of trialling it was close enough to zero in my specific circumstances to give it a shot. Thus far, it has provided a noticeable subjective improvement day-to-day.

(Note to any other OCD patients - I'm NOT suggesting you should try this, in part due to the anxiogenic properties of caffeine)

Of course that doesn't mean we should just throw open the doors to the various snake-oil pushers (especially where well-proven interventions exist), but IMO going too far in the other direction would also be a mistake.

[0] https://www.ncbi.nlm.nih.gov/pubmed/19573497

[1] Something I personally doubt, as other alternative treatments (including those I have suggested) have had either no effect or worsened the condition, but of course there is no way for me to rigorously test this.


I kind of share your perspective, but to be honest, my theory about the appeal of the communities you're referencing is that people are not in control over their care, so they do what they can to achieve it. They're stripped of it by medical regulation and lack of choice over who to go to. So they're forced to go to some alternative, totally outside the system, to get any kind of traction in personal autonomy.

The choice, at least in the US, is (1) traditional, science-based medicine delivered in an oppressively regulated system, full of monopolies, regulatory capture, patriarchical, patronizing attitudes, and restrictions on how you care for yourself, or (2) untested, unscientific, but free approaches to care where you are the active driver. This is a bit of an oversimplification, but not much.

It's absolutely no surprise to me that we have so many problems with lack of engagement in preventative self-care when the entire system revolves around deference to authority. Your question "should you trust an authority?" is a bit misguided, because in the end, if you say no, what choices do you have?

Expertise in the medical system is based on hoop-jumping and guilds as much as actual rigor of argument and expertise.


Your assertion that "policy makers" are systematically withholding "solid information about your body" is paranoid nonsense.

I said nothing of the sort. Both of the replies to me seem to be reading in enormous amounts of bs that isn't in my remark at all.

Patients being informed about their condition is not all about people promoting snake oil. For some conditions, the patients themselves are often better informed than general MDs. Only actual specialists in the condition really know more and going to a general MD with no experience in their specific condition sometimes has catastrophic (even deadly) results.


You said everything of that sort.

If that was not your intent, then perhaps in future you might say what you mean, rather than defending the vendors of false hope and perpetuating the extremely harmful myth that one can treat oneself.

As in this:

> patients themselves are often better informed than general MDs

No, that is a gross overgeneralisation and not true of any condition. A few patients may have slightly better information in one dimension of their condition than a GP. Presuming otherwise is foolhardy arrogance that misses the profound interconnectedness and subtle complexity of body systems. And this is especially the case with endocrine and immune systems.

Patients should be as informed as possible, yes, because this is always a benefit to one's treatment. Crossing the line into "I-know-better"-land is arrogance and idiocy.


Would you please stop being so personally rude and thorny? Discussions are always of higher quality when we aren't and quality is what we're here for.


Yes, sorry, that was hyperbolic of me.


The problem for me is that currently the choice is between accept definitions of "authority" as it is decided for you, or "you've crossed into arrogance and idiocy." And the consequences ultimately are most severe for the patient, who has more skin in the game, literally, than the provider.

I'm not talking about quack authority figures, though, either. Let's say, for example, that you, as a patient, have been reading the literature on inflammatory systems and have become convinced that some immunology PhD has a very convincing scientific case that's been made for some etiology and treatment. Why should you, as the patient, have to get the approval of a physician to go through with it? It might be a good idea to consult with people of different backgrounds, to get competing opinions, but what if the medical literature has already done that? What if you ultimately disagree? What if the experts disagree?

My experience is that GPs do not always know better, because there is just too much to keep track of. Patients are the ones whose condition is most salient to them, and they're the ones who are spending the most time on it.

Honestly, I think the best solution to alternative medicine is to just deregulate the whole thing, so people don't have the excuse of regulatory capture for a particular decision. When there's nothing "alternative" anymore, and everything is just alternatives, everything is medicine, just good or bad.


Deregulating the whole thing was actually tried, in that we used to have no regulations. It was a disaster. Many people suffered and died unnecessarily due to treatment by quacks with useless "medicines". Read up on the history of the AMA and FDA.


If it's a matter of degree, then here's my take on your remark.

Your comment has not merely crossed the line into "I-know-better"-land, it is days into that territory, is lost without a map, is desperately looking for water and shelter, but is still having terrible trouble admitting to itself that it might have made a horrible mistake.

> Let's say, for example, that you, as a patient, have been reading the literature on inflammatory systems and have become convinced that

Uh-oh.

> PhD has a very convincing scientific case

That is the point where your physician had to stifle a giggle, I'm afraid.

> Why should you, as the patient, have to get the approval of a physician to go through with it

You don't. If you can perform the procedure on yourself, it's perfectly legal.


Uh-oh.

That is the point where your physician had to stifle a giggle, I'm afraid.

People who are sincerely and humbly committed to seeking truth on a topic, don't make sneering comments like this.


Did they edit their comment to say "treatment" instead of "procedure"?

Because there's lots of things that fall under treatment that have pretty effective legal gatekeeping around them.


I don't believe so. Inopinatus has wildly misquoted me and others here.


When I quote someone, I put it in "quote marks", or > italic.


> No, that is a gross overgeneralisation and not true of any condition.

Bullshit. Anyone with a scientific background and a vested interest in studying a specific uncommon disease will likely know more about it than most GPs. General Practitioners are just that - generalists. They know the basics, plus enough to refer patients to an appropriate specialist. It's unreasonable to expect them to be well versed in every single obscure condition that a new patient could possibly have, and it's a naive appeal to authority to state that they automatically "know better" due to having a medical degree.


> Anyone with a scientific background and a vested interest in studying a specific uncommon disease

You totally missed my point there, which was rebutting that patients "often know better", which is just plain crap.


You are "rebutting" things that haven't been said by anyone. And then insisting you are right.

Here is what I actually said, which you intentionally misquoted and are now twisting into something else entirely:

For some conditions, the patients themselves are often better informed than general MDs. Only actual specialists in the condition really know more


And that is not so except for a very small minority of presentations. If you'd said "very occasionally" rather than "often" I might agree. Everyone else is simply pretending to a much higher level of expertise than they possess.


Presuming otherwise is foolhardy arrogance that misses the profound interconnectedness and subtle complexity of body systems. And this is especially the case with endocrine and immune systems.

In my experience, people with chronic illness who take their own treatment into their own hands have a far better a appreciation for the "interconnectedness and subtle complexity of body systems" than do mainstream physicians.

My own recovery from chronic fatigue has come about because I developed a deep understanding of this and undertook an assortment of practices that enabled these systems to correct themselves.


> A few patients may have slightly better information in one dimension of their condition than a GP. Presuming otherwise is foolhardy arrogance that misses the profound interconnectedness and subtle complexity of body systems.

This is precisely why a good doctor-patient is so valuable. Some (maybe not often, but at least some) patients _will_ know about the specifics of their condition better than a GP (e.g. if they have a scientific background and prepared to do sufficient reading), but the GP will be able to put that into a broader context of which someone focused on the specifics (and non-objective) will likely be unaware.

FWIW, my GP has said on at least one occasion "I'm considering drug X because of blood results Y etc. Go and do the reading on it and let me know next time if you want to try it; you'll have a deeper and more recent understanding of the potential benefits/side-effects than me" (IIRC it was the addition of levothyroxine to counter fluctuating fT4 levels, whilst accounting for any drug-drug interactions with current medications).


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Cytokines are actually produced by the human immune system, so banning them wouldn't do much good. See the slides linked in the article[0]

Unless you were making a joke, in which case I didn't get it.

[0]http://www2.nau.edu/~fpm/immunology/lectures/Chapter012.pdf


Are you a bot or a real person? How could you ban cytokines? That doesn't even mean anything to the point where I'm not sure you are a human author.


2464 karma, so probably no, not a bot.

Highly clueless about cytokines, though...


This is a form of personal attack and such things are not allowed in HN comments. The vanishingly rare case where you might be correct is massively wiped out by the damage this causes in every other case.


I think you've misunderstood the science in this article. You can't ban cytokines - they're endogenous; a signalling protein produced by many of your cells as part of the immune response.


> But let's say that in turns out cytokines do, in fact, cause CFS, and that -- for the sake of argument -- banning them would be a good thing.

> banning cytokines

Cytokines are endogenous. I fail to see what "banning cytokines" could even mean.


They are produced by the body. Your comment is truly off topic because it has nothing to do with the article.


Ideology is a funny thing, I often identify as a libertarian but the American definition seems bizarre to me.

For me it's a definition of a governments or institutions place in an economy. Put simply their only remit is to address market failure.

You could probably call me a classical liberal I suppose


I don't think of myself as a libertarian capitalist, or anything close to that, but I think that being one does not preclude one from playing the long game. One can certainly decide that they will gain maximum profit by investing heavily in research that doesn't have an immediate practical result now, betting on the idea that over time, that research will see a return.

For instance, suppose that the cure for this problem turns out to be an expensive, complex drug. Somebody stands to make a lot of money by figuring out what that drug is and selling it. They can't make that money now, but eventually they'll be able to, so they support the research in order to get there.

Now, do I support profit being the driver behind this kind of research? Not at all. Do I think it's the best system for doing this? Hardly. But can it work? It can and sometimes does.


That's not so true in Germany, or in Europe in general


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"Please avoid introducing classic flamewar topics unless you have something genuinely new to say about them."

https://news.ycombinator.com/newsguidelines.html

We detached this subthread from https://news.ycombinator.com/item?id=14896531 and marked it off-topic.


Allowing people to take health purely into their own hands leads down to a very dangerous path

I said nothing whatsoever to adovocate allowing such a thing.

But thank you for providing evidence of my statement about how controlling a lot of people want to be when it comes to such topics.


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Wow, you are completely twisting everything I have said. So twisting it that engaging you in good faith is essentially impossible. You are basically determined to tar and feather me, and never mind what I actually said.


I am an MD, born in Russia, but did medical school here in the United States. All the same, people constantly ask about the Russian medicine, and so I was recently asked if we have fibromyalgia in Russia. My answer was that I don't know about fibromyalgia. But what I know is that half of the psychotropic drugs that people are prescribed in this country we only give to political prisoners in Russia.


On the other side, every other drug effecting brain in the slightest is a prescription drug due to being abused by addicts. Ranging from a popular nootropic Pirocetam to Tropicamide. I'm not sure what feats of ingenuity Russian drug addicts perform to get hooked on them, but I had hard time getting Tropicamide for my eyes when I was in Russia. Local ophthalmologist told me to do a ten day course of Tropicamide, but couldn't give me a prescription because I'm not a local, and the pharmacies couldn't sell me this thing without an official prescription.


How do you know this? Has the Russian government a public list of psychotropic drugs it uses on its political prisoners?


Right, Russian government publishes a list of psychotropic substances that are given to political prisoners. Jeez, people, it's a joke. The joke is a commentary about American proclivity to eat psychotropic meds like vitamins.


I was under the impression that you seriously thought you knew which drugs the Russian government uses on its prisoners and was making a tongue-in-cheek remark in response.


imo one problem with your joke is that it's not clear what part of your post isn't a joke anymore. was the whole thing setting up for a punchline, or are you even from russia. ends up as kind of a bizarre post for that reason.


Can you elaborate? Why are political prisoners medicated?


Not GP, but I can elaborate a bit. It was common Soviet practice in the post-Stalin era to, instead of explicitly arresting political dissidents, to classify them as insane and have them involuntarily committed. Looks less bad than calling it a jail.

I haven't heard of this practice being continued in post-communist Russia, but I wouldn't be enormously surprised to hear that it was.


CFS is most likely "Candidasis". An overgrowth of candida bacteria/yeast in the gut.

This is very well known, and easily and cost effectively treatable.

Consistent overconsumption of processed sugars leads to candida overgrowth. The body addresses this naturally through inflamation. Prolonged inflamation yields depression symptoms, and a host of other things.

Google: candida

You can recover from this mostly in one night for $5 and fully in about 2 weeks for $30.

Ultimately these Stanford guys will try to design and patent an anti-inflammitory and it will cost you alot and not solve the problem. Address the source of inflammation.

Im surprised no one in this thread knows this and debate has wandered into little to no value.

If you are suffering from this, please please research candidasis or candida cleanse.


The trouble with this kind of comment is that I can find scores of people who say that CFS (and fibromyalgia) is most likely a misdiagnosed hypothyroidism, treatable with standard T3/T4. Lots of people say "it's obviously <this thing> treatable in <this cheap way>" for some value of <this thing>, and that makes them all less credible.


This study suggests that candida is probably not the culprit:

https://www.ncbi.nlm.nih.gov/pubmed/18339054


FWIW, this did not work for me.




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