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."
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.
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?
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.
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 . 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.
Machine Learning techniques are well suited to crunching this type of data, but don't underestimate the difficulty in collecting so much data.
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.
Perhaps for the distinctions you are trying to draw it is not an 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.
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
"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." 
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.
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.
It does get worse if you run everything on a healthy patient though.. you definitely get back many false positives.
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 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).
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.
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
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..)
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.
I don't understand. Can you clarify what you're saying?
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.
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.
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".
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.
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.
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.
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.
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.
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)
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.
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.
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.
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”.
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.
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.
Here's a subreddit where people complain about the problems that people bring them:
Here's a subreddit for which the tagline starts with "Tired of stupid customers?":
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.
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.
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.
It's a job like any other. Some people don't want to go the extra mile because they have other priorities in life.
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.
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.
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.
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.
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.
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.
How do you know you completely succeeded?
Nevertheless, thank you for calling this out. There is way too much p-hacking in science, especially biology.
 Benjamini Y, Krieger AM, Yekutieli D (2006) Adaptive linear step-up procedures that control the false discovery rate. Biometrika 93:491–507.
I actually built an online FDR calculator previously, since I enjoy the topic so much: https://tools.carbocation.com/FDR
...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.
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
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.
Do get diagnosed and get a second opinion, but it might or might not be CFS.
I suffered from CFS myself and recovered about 17 years ago (with no relapses since), so it is possible.
- 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.
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.
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.
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.
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 ?
 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.
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 .
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.
 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.
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.
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'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?
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.
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.
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.
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.
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.
Personally, I use caffeine, in addition to an SSRI, as an OCD treatment, based on a single, small (n=12 for the caffeine group) clinical trial. Clearly the evidence isn't there to declare it a viable treatment -- it could easily be placebo 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.
 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.
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.
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.
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.
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.
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
> 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.
People who are sincerely and humbly committed to seeking truth on a topic, don't make sneering comments like this.
Because there's lots of things that fall under treatment that have pretty effective legal gatekeeping around them.
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.
You totally missed my point there, which was rebutting that patients "often know better", which is just plain crap.
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
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.
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).
Unless you were making a joke, in which case I didn't get it.
Highly clueless about cytokines, though...
> banning cytokines
Cytokines are endogenous. I fail to see what "banning cytokines" could even mean.
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
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.
We detached this subthread from https://news.ycombinator.com/item?id=14896531 and marked it off-topic.
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.
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.
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.
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.