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Comment by philipkglass | Hacker News Reader

I had a sibling who struggled with CFS for years. Even before this bad study came out the usual reaction from doctors was you're suffering from mental illness/try exercising/you're faking. It sounds almost like this study was constructed for the convenience of doctors so they could point to the publication and keep suggesting what they had already suggested.

It's hard living with a debilitating medical condition that doesn't have good treatments or a clear cause. It's even harder when the doctor says "I think it's all in your head" instead of "sorry, we really don't know how to treat this yet." That sort of consistent dismissal/borderline victim-blaming from real doctors is what I think pushed my mom toward bogus alternative health practices. There appears to be nothing medically valid about chiropractors but at least they don't call you crazy just for telling them about the experiences you've been having.

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I had something like that forever. Chronic fatigue, headaches, foggy memory, muscle pain. It all built up to actual chronic depression. The kicker is that im, as far as tests go, stupid healthy. I even exercise regularly. I've been to doctors on and off but the prescription was all sleep (get plenty), exercise(boxing six times a week), eat better (eat pretty well all things considered) Etc.

Since I kept getting politely told it was in my head I kept up my slow stream of research and personal experimentation.

I finally had a breakthrough earlier this year. I realized that my stomach was misbehaving more and more than it used to. Thought maybe I was lactose intolerant so I Stopped drinking milk. Holy shit did I feel better. Thought for sure that it was milk. Felt bad after having some cookies. Assumed it was the low milk content in them. Cut out anything sweet since most sweet things have milk. Cheated in Italy and had cheese and such. Felt fine. Kept cheating. Got a little worse. Had a bite of gelato. One bite. Instant gastronomical disagreement. Finally made the connection between sugar and my mood. Like any sugar. Even overly refined bread is risky. My favorite drink used to be lattes. Of which the steamed milk is practically pure sugar froth.

Anyway. A very large portion of my symptoms have vanished. I can even go back and relate the mopey parts of my journal to particularly refined dietary swings (like when I'm in a high stress time with lots of prepared food)

As soon as I get real health insurance again I'm gonna persue a dietary based inquiry rather than a mood and psychiatric based one. I imagine I can get even better results.

Maybe start monitoring your glucose levels?

It was a little high for a while when I wasn't exercising. But then it went normal again fast with the return of healthy habits. I would like to order some of the nfc glucose monitors from Germany that stay on the arm a week at a time and map my blood sugar to get a better view. I really hate the needle for the regular kind.

That sounds awful.

There's a phenomenon that I wish I had a name for. Or even a good description of. It's when people imagine that your issue is just something they've experienced, even when the magnitude is very different. E.g., when people who have been sad at some point tell clinically depressed people that they should just cheer up. When they tell somebody with an anxiety disorder that they should calm down. Or, as with your sibling and CFS sufferers that they should just get a little exercise and it'll all be fine.

I can sort of forgive that in regular folk. But in doctors? It's shameful.

My folks are like that too. They never experienced any psychic or physic trouble at any point in their 70 years long life, so they cannot fathom that people may strongly suffer from any of these problems, which are in their opinion not real problems and can be solved with cheering up and making an effort, because that's how they solved their own 5-minute 'problems'.

> They never experienced any psychic or physic trouble at any point in their 70 years long life

How can you tell?

I cannot imagine growing up in a context like that. That must have been rough.

I think you're right about the relationship between suffering and empathy, though. There have been some awful things in my life. But given the time to recover from them and really consider the experience, empathy has gotten much easier for me from them.

Yup, that's a problem with procrastination, too. Many people will dismiss it as just "laziness", heard it many times.

It's like the Typical Mind Fallacy, but for bodies/health.

maybe false empathy? everyone with ADHD has gone through this too.

Even if it is an illness of the brain (and it might well be), it should still be treated seriously, like many other similarly serious illnesses of the brain. Schizophrenia is an illness of the brain too, but no one says "It's all in your head, just get over it" to the afflicted.

I don't think any doctor says "it's all in your head" or "you're crazy". Most doctors do think it is psychosomatic, which is very different (psychosomatic means the physical symptoms are real, vs imaginary). That still seems the most plausible explanation, from what I can see (having researched it, and also suffered from it myself).

I shouldn't have put "it's all in your head" in quotation marks, because I wasn't there in person and I too doubt that a doctor uttered those literal words. There was however an attitude of skepticism/annoyance conveyed through a combination of words and actions.

One example: sibling had become dangerously underweight due to difficulty eating/swallowing. There was eventually a barium swallow test. One of the nurses excitedly told sibling after the test revealed clear abnormalities something like "wow, I am sorry, there is something clearly wrong here." The previous attitude having revealed (even if not in so many words) that she believed sibling to be a faker wasting time.

I don't know if CFS was even the right label for the cluster of symptoms. Even in infancy there were many more problems with getting sick than the other kids in the household experienced. Infections and a cluster of other symptoms that ended up labeled CFS grew really severe in adolescence through mid 20s, then seemed to (mostly) go away as mysteriously as it had come. It was nearly a decade of misery that never had any clear diagnosis.

I've also seen a friend with lingering complications from third degree burns suffered 10+ years ago be treated pretty shabbily as she tries to keep her pain under control. Modern medicine in the US seems pretty darn good at treating acute problems with obvious causes and fixes. It seems to be pretty crappy at treating chronic issues, especially ones that don't have good diagnostic markers. If I ever end up in the hospital again I hope it's for a nice obvious problem like a broken leg.

I have an unidentified repetitive stress injury (RSI) and doctors have universally tried some treatment, failed, then told me I'm simply working too much. This happened after I stopped all my hobbies and took a 30h/week job (flex time, with frequent breaks). The identifier RSI lends itself to this diagnosis.

When the symptoms show signs of improving, the doctors immediately conclude "Well, you're getting better now, so just continue as you are now and we'll consider this resolved." An acquaintance suggested I overwork myself before going to the hospital so I don't risk being dismissed by a temporary improvement in my symptoms.

I've had several sprains and a broken wrist that were resolved quickly and without complications.

This article and your comments resonated with me.

I have a friend who has struggled with increasingly severe "RSI", for lack of a better diagnosis. He even had carpal tunnel surgery on both hands. In the end he went to Mayo Clinic and they diagnosed him as having fibromyalgia. This was pretty recent so he hasn't had much time to experience the effects of the recommended treatment program, but it may be something for you to look into.

NB, but AFAIU fibromyalgia is a condition that's not ruled in, but is made by exclusion -- symptoms not otherwise explained. Mayo's site gives "widespread pain for more than three months -- with no underlying medical condition that could cause pain".

Several of the general / vague symptom conditions are similarly diagnosed.

I have a chronic pain condition, and the second doctor I saw about it literally said 'given that the first doctor ruled out xxx and yyy, it seems like it's all in your head rather than anything wrong physically; we can offer you an appointment with a psychotherapist if you'd like?'

Me too.

Took 9 years, and 4 doctors till someone went, "Huh... Let's get you an MRI."

Still not 100% diagnosed, but its in the fibro family. Which has its own issues with doctors disbelieving its existence.

I struggle, looking at the medical world.

Psychology is a really young science. Yet, a lot of the unknowns get passed to it, rather than an admittal that "we don't know".

It might be fear, (getting sued), or arrogance (we know just about everything), or another reason.

The result is the same.

You have victims who don't have the knowledge required to advocate for themselves, and a tendency for the industry to place the entirety of the responsibility on them. [0].

Its hard. So hard.

Where to draw the line, of whose responsible, and what ethical considerations a researcher should take into account, is a hard task. One that I am certainly not capable of... But it needs greater thought.

[0] That is my experience, in my town, in my nation. Its anecdotal, and should be taken with a grain of salt.

Sounds very similar to what people have to go through for other chronic disorders such as Irritable Bowel Syndrome. The "it's in your head" bit has to be the most aggravating thing to hear, I know what it feels like.

Add to this the rampant prescription of antibiotics and antidepressants, just to push the actual problem under the rug. It's very infuriating.

Anecdotally, my Irritable Bowel Syndrome which I had lived with in a debilitating condition for about 10 years completely disappeared (5 years now) after I had my appendix removed. Since then I regard IBS as basically a label doctors throw at something they can't diagnose or don't understand.

awful. and relatable.

CFS was my brother's diagnosis, until it became lyme. others take a psychiatric slant. "sorry, we really don't know how to treat this yet," or even "sorry, we're not really sure what it is, but we believe it exists" is somehow an impossible conclusion. the only thing shared by his GP, internist, CFS specialist, psychiatrist, and lyme specialist, really, is a kind of diagnostic hubris.

> CFS was my brother's diagnosis, until it became lyme.

A family member of mine was diagnosed with CFS and it was like the doctors she talked to were stuck in decade-old views of psychology. It was psychosomatic and as a result there wasn't much help she could get. Never mind that she went from one of the most (hyper-)active, traveling, bubbly people to being stuck in a wheelchair and sleeping much of the time; because it was in her head these very real effects somehow... weren't real enough.

The first and most obvious issue, in my view, is that even if CFS is 'just between your ears', then that's still no less real of an issue and it is not helped by dismissal.

The second issue that I hadn't really considered until your comment, and one that might be even more serious, is that this dismissal might actually prevent specialists from proper diagnosis.

After a decade (or maybe even two, I don't even remember anymore) of low-energy existence, living on a pittance, having only the luck that many of her old students and friends kept taking care of her, after all that she went to some clinic somewhere in Asia (Singapore, I think) and while I'm not sure what the diagnosis was, it was apparently something relatively known (something related to vaccines she had before visiting Vietnam), treatable, and she was back to her old self in no time (a decade-or-so older, though).

I'm wondering if more effort might have been made, and a solution found much sooner, had it not been so easy to dismiss her issues as 'psychosomatic'.

I've experienced the same response from doctors regarding an abnormal reaction to the drug finasteride, and it is extremely difficult to manage emotionally. They have never seen the problems I had yet have seen many people they alleged had psychosomatic issues so probabilistically it made sense on their end that I would probably be the latter. But many of them have dogmatically clung to the idea that since they don't understand how my problems could be caused by the drug it has to be impossible. The idea of psychosomatic diseases functions as catch-all that encompasses everything that can't be explained with our current understanding.

Few clinicians I've worked with were willing to admit that their medical science is not advanced enough to explain my problem rather than calling me crazy, even though it was just one lifetime ago that antibiotics were even discovered.

It's terrible. I have a similar condition due to chronic pain. I get told I'm a lazy good for nothing all the time by my parents. I've just accepted that most people won't understand.

I have MS. People can't/don't/won't empathize with things they can't see or understand firsthand. I could give work examples of being threatened illegally while on FMLA but posting this under this username is dangerous enough.

> you're suffering from mental illness

> when the doctor says "I think it's all in your head"

> That sort of consistent dismissal/borderline victim-blaming

I don't know if you're aware of it, but you're saying some pretty hateful things about mental illness here.

Also, when someone thinks you have an illness with medically unexplained symptoms and they offer a psychological treatment they're not saying the pain isn't real, or that you're making it up. They're saying we don't know how to treat this, but here's something that has an evdence base that works for some people.

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