"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/

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

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.

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.

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.

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.

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.

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.

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.