4 ms·

My mom had this, fairly severely. As with many others, most doctors (and even family members) said it wasn't real, was in her head, etc. Then, after around two

by nomel 3y ago

My mom had this, fairly severely. As with many others, most doctors (and even family members) said it wasn't real, was in her head, etc. Then, after around two decades, it just all went away. But, in its place were some new, odd, allergies. My theory is that her immune system was perturbed in some significant way, which caused whatever was causing the CFS to be dealt with/managed. Who knows. Seeing the doctors call her a liar, to her face, really knocked doctors off the pedestal that society lead me to believe they were on.

agumonkey 3y ago
some doctors really think too high of their education. very detrimental for everybody with strange conditions
- jobs_throwaway 3y ago
  The modern process to become a doctor 1) selects for incredibly obedient, follow-the-rules type individuals and 2) implicitly and explicitly enforces those norms. If becoming a professional programmer required 4 years of grade grubbing in undergrad, 4 hellacious years of graduate school, then 4+ more years as a resident, and once you started working your customers could sue you every time they encountered a bug you wrote, I bet you we would see similar risk aversion/coherence to accepted wisdom in the profession that we do in medicine.
  - mattgreenrocks 3y ago
    Yep. And doctors often seem to have zero interest in something that doesn't fit their models well.
    - onlyrealcuzzo 3y ago
      Why, Margaret, assume you're a spherical cow and take these brown pills twice daily. You'll be just as new in a jiffy.
  - agumonkey 3y ago
    Oh I'm not asking risks off of them, I somehow respect their effort and responsabilities, just a more neutral point of view. They're judgement can lead to long term damage too if they refuse to take your story into account. A simple "you don't fit the standard grid, maybe there's something else, personally I can't help you, keep digging."
  - s1artibartfast 3y ago
    I think there is more to it than that. The process also selects for people who are very hard working and trains them to think in terms of averages. Everyone wants an unconventional doctor when the convention isnt working for them, but that doesn't mean people on average would be better off if doctors didn't follow convention. The desire for a doctor that bucks the rules breaks down once you understand that they aren't super-human problem solvers (as seen on TV). Even listening to and believing patients becomes an optimization problem.
  - graemep 3y ago
    You get the same effect in countries that are less litigious, even in countries where it is really rare for doctors to be sued so I think you can remove the legal risk. I think it is a combination of social conditions (a job which is high up a hierarchy of respect - well above what in Britain professional people have taken to calling "the gammon" in recent years), plus dealing with the general public, plus knowing one has a high level of training and skill, plus the tendency of any closed profession to strong on consensus.
jordanpg 3y ago
I also have a mom who has/had this. It started as fibromyalgia. Then it was multiple chemical sensitivity. Then it was chronic fatigue syndrome. Then it was a autoimmune disorder. Most recently it is an exotic form of lupus with extreme photosensitivity. Each time, like you said, it just went away but was replaced by the next thing. I don't have any doubt that my mom's subjective health experience is real and unpleasant, but after 30 years of this, I do have my doubts about a physiological etiology. The peace I've had to make is that even if it is "in her head," the pain is real.
- tasty_freeze 3y ago
  > I do have my doubts about a physiological etiology. I hope whatever is afflicting your mom gets sorted out, but please don't generalize your N=1 experience of your mom to the entire population of ME/CFS sufferers. It only breeds contempt for the condition. As a N=1 counter example to yours, my wife has suffered from it for 20 years and she is still suffering from it, with the same hallmarks the entire time. She also suffers from EDS (Ehlers Danlos Syndrome), which actually came first. Statistically, people with EDS are far more likely to have ME/CFS. If ME/CFS doesn't have a physiological basis, how would explain this -- perhaps that people with EDS tend to develop the same health delusion?
  - jdietrich 3y ago
    >please don't generalize your N=1 experience of your mom to the entire population of ME/CFS sufferers. It only breeds contempt for the condition. If suggesting that ME/CFS may be a mental illness breeds contempt towards sufferers, then we really need to reflect on our attitudes towards mental illness. The aetiology of ME/CFS should have absolutely no bearing on how we regard people suffering from it. Mental illness is real illness.
    - freedomben 3y ago
      > If suggesting that ME/CFS may be a mental illness breeds contempt towards sufferers, then we really need to reflect on our attitudes towards mental illness. Absolutely you are correct on this, but at the same time it doesn't change the reality that to many people and doctors, ascribing it to mental illness is essentially a dismissal, which is wildly unhelpful to the person suffering.
boringuser2 3y ago
So you ignored a bunch of doctors and feel vindicated? Doesn't pass the sniff test. Don't ignore doctors, people. That said, mental illness can be very debilitating and is very real.
- kazinator 3y ago
  The doctors were denying the existence of an illness though. Don't ignore the doctors when they diagnose you with an illness. If they insist you don't, there is a risk in not ignoring them. Maybe you have something and their diagnosis missed it. (I do realize that from the grandparent comment, we cannot conclude that the doctors were proven wrong. The symptoms went away on their own, and were never diagnosed as being something physiological, which would contradict the "in your head" claim.)
- protocolture 3y ago
  No the doctors ignored her, big difference.
- com2kid 3y ago
  I had a doctor tell me my knee pain was because I had worn away the cartilage and it was just going to hurt for the rest of my life. I had a personal trainer tell me it was because the muscles on one side of my leg were much larger than the other (leg length difference) and that was pulling my kneecap out of place. The personal trainer was correct, a few months of focused single leg exercises and the knee pain that had been with me for years went away. Doctors don't know everything.
  - boringuser2 3y ago
    You didn't actually prove him incorrect. You essentially did PT, which would help joint pain.
    - com2kid 3y ago
      > You didn't actually prove him incorrect. There was 0 damage to the cartilage. I did not have early onset arthritis. I had pain from inflammation due to my kneecap being pulled out of place. One side of my leg was visibly more muscular than the other. I had also done PT, which hadn't helped any. The PT actually said that in the end that the strength training I did was likely the best approach.
bongodongobob 3y ago
Was this after running tests that turned up nothing or did they just say "no, we don't believe you" from the start?
- freedomben 3y ago
  I'm not GP but had similar experience, and yes they run every test they think is "reasonable" (i.e. insurance will approve) given the symptoms. Problem is it's a game of finding statistical outliers, and often these types of conditions cause only subtle changes to conditions. Mix with the problem that the statistical ranges are based on what labs are seeing in tests, but for some of the tests people usually only get them when they are having symptoms, which artifically pushes the outlying bands even further out so that "normal" includes a chunk of people that have the condition! And then even if they do find stuff, it's usually all about treating the symptoms and not the causes. Except nowadays only certain symptoms because we've decided that the small percentage of people who abuse some pharmaceuticals are a good enough reason to err on the side of denial to a legitimate person rather than granting to an illegitimate person. In no small part thanks to a DEA who will clap a well-meaning doctor in irons if they give t someone who shouldn't, but there's no penalty at all for withholding from someone who needs. It's no surprise which side they would rather err on and bet their medical license/livelihood on.
pwthornton 3y ago
The allergies angle is interesting. I am doing allergy immunotherapy shots right now, and the first few weeks of doing them, I had the worst fatigue of my life. I just had no energy and low desire to do things. Once my immune system adjusted, the shots got a lot easier each week.
kazinator 3y ago
> Then, after around two decades, it just all went away. That doesn't confirm that the doctors who said it was all in her head were wrong.
- nomel 3y ago
  Sure, but the simultaneous rise of other immune problems (including gut problems) is an interesting coincidence. The strangest difference between the medical and engineering world that I've seen is that, in engineering, coincidences are signal with significant importance that often expose corner case problems, or something deeper. In medicine, coincidences are usually disregarded. Interesting research usually starts with coincidence, since the only other mechanism is having to wait for someone to, coincidentally, think of that same. Definitely different worlds. But, practitioners are far removed from research, and coincidence/curiosity isn't actionable, so it makes some sense.
  - kazinator 3y ago
    In engineering, how seriously do you investigate a report about one unit out of ten millions, compared to one in a thousand.
    - nomel 3y ago
      What's the context for these sorts of scales your'e giving? FM is estimated to around 2% adults. CFS is maybe around 1.3%. And, medical reporting is, objectively [1], terrible. [1] https://pubmed.ncbi.nlm.nih.gov/16689555/ https://pubmed.ncbi.nlm.nih.gov/16689555/
    - jfim 3y ago
      We had a bug at a previous employer that would cause many of the main database replicas to crash. We isolated it to a collision in the code that serializes query predicates, which happened about one time out of 2^32ish queries. So yes, relatively rare occurrences do get investigated.
tick_tock_tick 3y ago
Why especially with > Then, after around two decades, it just all went away. are you ruling out it being psychosomatic? It "being all in her head" doesn't mean she isn't chronically fatigued just that the cause is in her head.
simcop2387 3y ago
It's stuff like this that makes me wonder a lot about the studies happening around chronic inflammation and things like that too. I won't be surprised if a lot of chronic illnesses end up turning up as auto-immune and gut/body-biome issues where something has gone awry and now there's too much of something happening. Things like EBV staying around for long periods of time at low levels is one of the purposed causes of CFS symptoms, among others, in a lot of people, given it's prevalence. https://en.wikipedia.org/wiki/Epstein%E2%80%93Barr_virus#Role_in_disease https://en.wikipedia.org/wiki/Epstein%E2%80%93Barr_virus#Rol... I also won't be shocked to find that CFS turns out to be just common symptoms of dozens of diseases/syndromes that are all different and we just suck at identifying them right now. That'd also help explain why it's so hard to nail down and treat.
notabee 3y ago
It's been known for a long time that women are more prone to autoimmune issues of all kinds, and yet as other comments here discuss, there is just not much done in the way of thorough exclusion of rarer autoimmune causes. Many doctors, even rheumatologists, just run a standard set of blood tests that only test for common autoimmune issues, and if none of those turn out positive well then I guess it must all be in her mind! And since portability of medical records sucks in the U.S., one often starts again at the beginning with each new doctor no matter how much has been examined before. The gulf between medicine-as-accrued-knowledge and medicine-as-actually-practiced is very wide. https://arstechnica.com/science/2024/02/female-propensity-for-autoimmune-diseases-tied-to-x-chromosome-inactivation/ https://arstechnica.com/science/2024/02/female-propensity-fo...

by nomel 3y ago

agumonkey 3y ago

some doctors really think too high of their education. very detrimental for everybody with strange conditions

jobs_throwaway 3y ago
The modern process to become a doctor 1) selects for incredibly obedient, follow-the-rules type individuals and 2) implicitly and explicitly enforces those norms. If becoming a professional programmer required 4 years of grade grubbing in undergrad, 4 hellacious years of graduate school, then 4+ more years as a resident, and once you started working your customers could sue you every time they encountered a bug you wrote, I bet you we would see similar risk aversion/coherence to accepted wisdom in the profession that we do in medicine.
- mattgreenrocks 3y ago
  Yep. And doctors often seem to have zero interest in something that doesn't fit their models well.
  - onlyrealcuzzo 3y ago
    Why, Margaret, assume you're a spherical cow and take these brown pills twice daily. You'll be just as new in a jiffy.
- agumonkey 3y ago
  Oh I'm not asking risks off of them, I somehow respect their effort and responsabilities, just a more neutral point of view. They're judgement can lead to long term damage too if they refuse to take your story into account. A simple "you don't fit the standard grid, maybe there's something else, personally I can't help you, keep digging."
- s1artibartfast 3y ago
  I think there is more to it than that. The process also selects for people who are very hard working and trains them to think in terms of averages. Everyone wants an unconventional doctor when the convention isnt working for them, but that doesn't mean people on average would be better off if doctors didn't follow convention. The desire for a doctor that bucks the rules breaks down once you understand that they aren't super-human problem solvers (as seen on TV). Even listening to and believing patients becomes an optimization problem.
- graemep 3y ago
  You get the same effect in countries that are less litigious, even in countries where it is really rare for doctors to be sued so I think you can remove the legal risk. I think it is a combination of social conditions (a job which is high up a hierarchy of respect - well above what in Britain professional people have taken to calling "the gammon" in recent years), plus dealing with the general public, plus knowing one has a high level of training and skill, plus the tendency of any closed profession to strong on consensus.

jordanpg 3y ago

I also have a mom who has/had this. It started as fibromyalgia. Then it was multiple chemical sensitivity. Then it was chronic fatigue syndrome. Then it was a autoimmune disorder. Most recently it is an exotic form of lupus with extreme photosensitivity. Each time, like you said, it just went away but was replaced by the next thing. I don't have any doubt that my mom's subjective health experience is real and unpleasant, but after 30 years of this, I do have my doubts about a physiological etiology. The peace I've had to make is that even if it is "in her head," the pain is real.

tasty_freeze 3y ago
> I do have my doubts about a physiological etiology. I hope whatever is afflicting your mom gets sorted out, but please don't generalize your N=1 experience of your mom to the entire population of ME/CFS sufferers. It only breeds contempt for the condition. As a N=1 counter example to yours, my wife has suffered from it for 20 years and she is still suffering from it, with the same hallmarks the entire time. She also suffers from EDS (Ehlers Danlos Syndrome), which actually came first. Statistically, people with EDS are far more likely to have ME/CFS. If ME/CFS doesn't have a physiological basis, how would explain this -- perhaps that people with EDS tend to develop the same health delusion?
- jdietrich 3y ago
  >please don't generalize your N=1 experience of your mom to the entire population of ME/CFS sufferers. It only breeds contempt for the condition. If suggesting that ME/CFS may be a mental illness breeds contempt towards sufferers, then we really need to reflect on our attitudes towards mental illness. The aetiology of ME/CFS should have absolutely no bearing on how we regard people suffering from it. Mental illness is real illness.
  - freedomben 3y ago
    > If suggesting that ME/CFS may be a mental illness breeds contempt towards sufferers, then we really need to reflect on our attitudes towards mental illness. Absolutely you are correct on this, but at the same time it doesn't change the reality that to many people and doctors, ascribing it to mental illness is essentially a dismissal, which is wildly unhelpful to the person suffering.

boringuser2 3y ago

So you ignored a bunch of doctors and feel vindicated? Doesn't pass the sniff test. Don't ignore doctors, people. That said, mental illness can be very debilitating and is very real.

kazinator 3y ago
The doctors were denying the existence of an illness though. Don't ignore the doctors when they diagnose you with an illness. If they insist you don't, there is a risk in not ignoring them. Maybe you have something and their diagnosis missed it. (I do realize that from the grandparent comment, we cannot conclude that the doctors were proven wrong. The symptoms went away on their own, and were never diagnosed as being something physiological, which would contradict the "in your head" claim.)
protocolture 3y ago
No the doctors ignored her, big difference.
com2kid 3y ago
I had a doctor tell me my knee pain was because I had worn away the cartilage and it was just going to hurt for the rest of my life. I had a personal trainer tell me it was because the muscles on one side of my leg were much larger than the other (leg length difference) and that was pulling my kneecap out of place. The personal trainer was correct, a few months of focused single leg exercises and the knee pain that had been with me for years went away. Doctors don't know everything.
- boringuser2 3y ago
  You didn't actually prove him incorrect. You essentially did PT, which would help joint pain.
  - com2kid 3y ago
    > You didn't actually prove him incorrect. There was 0 damage to the cartilage. I did not have early onset arthritis. I had pain from inflammation due to my kneecap being pulled out of place. One side of my leg was visibly more muscular than the other. I had also done PT, which hadn't helped any. The PT actually said that in the end that the strength training I did was likely the best approach.

bongodongobob 3y ago

Was this after running tests that turned up nothing or did they just say "no, we don't believe you" from the start?

freedomben 3y ago
I'm not GP but had similar experience, and yes they run every test they think is "reasonable" (i.e. insurance will approve) given the symptoms. Problem is it's a game of finding statistical outliers, and often these types of conditions cause only subtle changes to conditions. Mix with the problem that the statistical ranges are based on what labs are seeing in tests, but for some of the tests people usually only get them when they are having symptoms, which artifically pushes the outlying bands even further out so that "normal" includes a chunk of people that have the condition! And then even if they do find stuff, it's usually all about treating the symptoms and not the causes. Except nowadays only certain symptoms because we've decided that the small percentage of people who abuse some pharmaceuticals are a good enough reason to err on the side of denial to a legitimate person rather than granting to an illegitimate person. In no small part thanks to a DEA who will clap a well-meaning doctor in irons if they give t someone who shouldn't, but there's no penalty at all for withholding from someone who needs. It's no surprise which side they would rather err on and bet their medical license/livelihood on.

pwthornton 3y ago

The allergies angle is interesting. I am doing allergy immunotherapy shots right now, and the first few weeks of doing them, I had the worst fatigue of my life. I just had no energy and low desire to do things. Once my immune system adjusted, the shots got a lot easier each week.

kazinator 3y ago

> Then, after around two decades, it just all went away. That doesn't confirm that the doctors who said it was all in her head were wrong.

nomel 3y ago
Sure, but the simultaneous rise of other immune problems (including gut problems) is an interesting coincidence. The strangest difference between the medical and engineering world that I've seen is that, in engineering, coincidences are signal with significant importance that often expose corner case problems, or something deeper. In medicine, coincidences are usually disregarded. Interesting research usually starts with coincidence, since the only other mechanism is having to wait for someone to, coincidentally, think of that same. Definitely different worlds. But, practitioners are far removed from research, and coincidence/curiosity isn't actionable, so it makes some sense.
- kazinator 3y ago
  In engineering, how seriously do you investigate a report about one unit out of ten millions, compared to one in a thousand.
  - nomel 3y ago
    What's the context for these sorts of scales your'e giving? FM is estimated to around 2% adults. CFS is maybe around 1.3%. And, medical reporting is, objectively [1], terrible. [1] https://pubmed.ncbi.nlm.nih.gov/16689555/ https://pubmed.ncbi.nlm.nih.gov/16689555/
  - jfim 3y ago
    We had a bug at a previous employer that would cause many of the main database replicas to crash. We isolated it to a collision in the code that serializes query predicates, which happened about one time out of 2^32ish queries. So yes, relatively rare occurrences do get investigated.

tick_tock_tick 3y ago

Why especially with > Then, after around two decades, it just all went away. are you ruling out it being psychosomatic? It "being all in her head" doesn't mean she isn't chronically fatigued just that the cause is in her head.

simcop2387 3y ago

It's stuff like this that makes me wonder a lot about the studies happening around chronic inflammation and things like that too. I won't be surprised if a lot of chronic illnesses end up turning up as auto-immune and gut/body-biome issues where something has gone awry and now there's too much of something happening. Things like EBV staying around for long periods of time at low levels is one of the purposed causes of CFS symptoms, among others, in a lot of people, given it's prevalence. https://en.wikipedia.org/wiki/Epstein%E2%80%93Barr_virus#Role_in_disease https://en.wikipedia.org/wiki/Epstein%E2%80%93Barr_virus#Rol... I also won't be shocked to find that CFS turns out to be just common symptoms of dozens of diseases/syndromes that are all different and we just suck at identifying them right now. That'd also help explain why it's so hard to nail down and treat.

notabee 3y ago

It's been known for a long time that women are more prone to autoimmune issues of all kinds, and yet as other comments here discuss, there is just not much done in the way of thorough exclusion of rarer autoimmune causes. Many doctors, even rheumatologists, just run a standard set of blood tests that only test for common autoimmune issues, and if none of those turn out positive well then I guess it must all be in her mind! And since portability of medical records sucks in the U.S., one often starts again at the beginning with each new doctor no matter how much has been examined before. The gulf between medicine-as-accrued-knowledge and medicine-as-actually-practiced is very wide. https://arstechnica.com/science/2024/02/female-propensity-for-autoimmune-diseases-tied-to-x-chromosome-inactivation/ https://arstechnica.com/science/2024/02/female-propensity-fo...