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> But several of those turned out to have underlying diseases that had been overlooked, including cancer, pulmonary embolism, and a muscle ailment called myosit

> But several of those turned out to have underlying diseases that had been overlooked, including cancer, pulmonary embolism, and a muscle ailment called myositis that causes weakness and fatigue. The surprise diagnoses suggest that people told they have ME/CFS often receive inadequate care—something many patients already know. “It’s a huge indictment of our medical system that they had to join a research study to find out what was wrong with them,” says Mike VanElzakker, a neuroscientist at Massachusetts General Hospital. You see this a lot with "diagnoses of exclusion," sadly. In the absence of specific tests, you can only reach certain diagnostic conclusions by ruling out other stuff first, but (particularly in American healthcare) we often don't perform the rigorous well-it's-definitely-not-<x> workup first. Or, depending on the circumstances, people don't understand that certain conditions are diagnoses of exclusion to begin with and jump to conclusions, like assuming they have IBS when they actually have Crohn's. (Ask me how I know, lol.) There's the recent rise of "Chronic Lyme Disease," which many physicians have noted is a dubious diagnosis at best, but it seems clear that most of those people are ill—just with something else. And that "something else" could be a positively-identifiable condition that they haven't been tested for yet, or it could be a legitimate diagnosis of exclusion, like ME/CFS. The problem, in either case, is actually testing people for all those other things first.

jjeaff 3y ago
It seems like the most likely answer is that it is just a lot of different things in different people. Fatigue is a symptom in almost any and all illnesses.
- bombcar 3y ago
  We also like to thing that doctors are able to extensively test and determine what is going on - but with many diagnosis and treatment, it's almost entirely based on patient self-reporting. We can test the blood for certain things, we can run other scientific tests, but for lots and lots of problems, we really don't have any scientific way to determine.
- spondylosaurus 3y ago
  I mean, TFA (among others) have made the case that ME/CFS is linked to (if not outright caused by) a number of specific kinds of physical dysfunction... but it's true that fatigue is a symptom of countless illnesses, so it gets difficult to figure out which patients are suffering from which conditions. Hence what happened in this study when they tried to narrow it down to a pool of ME/CFS patients :P
- quickthrower2 3y ago
  CFS is very different. Fatigue as a word alone has different meanings to different people. They use it to describe the effect of driving for too long and you need a rest. Or a poor nights sleep. Or maybe you went hard at the gym or the bar. It is nothing like any of those things. A good tell is that physical effort beyond a point makes it worse, and you need to stay within an energy envelope or you get severe symptoms. All activity is physical effort not just say running. Putting the kettle on for example or refactoring a line of code. You know that nice feeling when you feel better after you’ve been sick. You don’t feel that ever again.
  - 8A51C 3y ago
    Very accurate. The way I try to describe it, like a worn out recharchable battery- only charges to 80%, runs down quickly when you try to use it and takes ages to charge back up again. This is in some way trivialising the suffering, but I find helps people understand a little what it's like. At it's worst whilst I might be able to get out of bed and use the toilet, it takes a level of forethought, planning and effort that is unreasonable. Suffered with fatigue since stem cell transplant in 2011.
    - freedomben 3y ago
      Yes, people don't understand that even very basic self care like brushing your teeth or going to the can be completely overwhelming. Just receiving a text or an email when you're feeling can be crushing
    - quickthrower2 3y ago
      Sorry to hear that. I am embarrassing mild compared to most stories I read on r/cfs (which is why I just lurk) It has taken years to build back up to almost full time work without it being a boom/bust affair. I can’t imagine the more severe cases because you need energy to manage the problem, like a catch 22.
  - qwertox 3y ago
    Thank you for sharing this. I won't tell my situation, but at least I know that exercising does help me, so CFS is very likely not the problem.
jwells89 3y ago
To make all this worse, I believe the issues outlined may be magnified by distance from major urban centers. I have family in a rural part of the US and the quality of care immediately available there is poor, with only marginally better treatment available within an hour’s drive. To have more options than that, one is faced with a multi-hour drive and most major metros where quality care is most plentiful is several hours away. There’s been several people I’ve known or heard of out there who’ve for years not been able to pin down exactly what the root causes of their ailments are because the local physicians aren’t thorough and/or knowledgeable enough. It’s especially problematic for those on the older end of the age spectrum who even if they’re still able to drive, can’t manage such lengthy trips on their own very well.
- spondylosaurus 3y ago
  Absolutely. Hell, I live in a major urban center and the healthcare here still sucks. Years of getting the runaround and "Wow, that's so bizarre, you should go to the Mayo Clinic to find out what's wrong with you" only for an answer to emerge from something as banal as a colonoscopy. On that note, I maintain that the opioid epidemic hit the US uniquely hard precisely because of the lack of access you describe. (And I'm always surprised how few conversations re. the opioid crisis ever mention it.) When it's hard to find doctors, when it's expensive and time-consuming to visit them, when tests aren't offered or are too expensive and time-consuming for people to pursue them, when the medication for the condition they finally get diagnosed with is expensive and requires you to jump through a million prior authorization hoops to acquire... of course they turn to cheap, generic painkillers. We're not good at treating the underlying causes of pain, and the treatments that do exist are too often out of reach. We don't have adequate safety nets. People need to work, and it drives them to mask their symptoms.
  - freedomben 3y ago
    painkillers aren't even an option anymore either, unless you're older (by that I mean 60+), and even then a lot of doctors are adopting policies of "we never prescribe narcotics"
  - 3y ago
s1artibartfast 3y ago
I think people have strangely high expectations from doctors and medicine in general. They don't just want their problems to be diagnosed and fixed, but expect solutions to be determined and implemented in a way you dont see elsewhere. People don't go to their accountant and expect them to just find a way to make their taxes zero. I wonder if it stems from the fact that most medical problems people experience do have trivial and complete solutions, so that it isnt until people get older and more experienced that they realize not all problems are solvable. I work with dozens of doctors, and none of them are omniscient or omnipotent. They generally work hard, but dont have all the answers.

jjeaff 3y ago

It seems like the most likely answer is that it is just a lot of different things in different people. Fatigue is a symptom in almost any and all illnesses.

bombcar 3y ago
We also like to thing that doctors are able to extensively test and determine what is going on - but with many diagnosis and treatment, it's almost entirely based on patient self-reporting. We can test the blood for certain things, we can run other scientific tests, but for lots and lots of problems, we really don't have any scientific way to determine.
spondylosaurus 3y ago
I mean, TFA (among others) have made the case that ME/CFS is linked to (if not outright caused by) a number of specific kinds of physical dysfunction... but it's true that fatigue is a symptom of countless illnesses, so it gets difficult to figure out which patients are suffering from which conditions. Hence what happened in this study when they tried to narrow it down to a pool of ME/CFS patients :P
quickthrower2 3y ago
CFS is very different. Fatigue as a word alone has different meanings to different people. They use it to describe the effect of driving for too long and you need a rest. Or a poor nights sleep. Or maybe you went hard at the gym or the bar. It is nothing like any of those things. A good tell is that physical effort beyond a point makes it worse, and you need to stay within an energy envelope or you get severe symptoms. All activity is physical effort not just say running. Putting the kettle on for example or refactoring a line of code. You know that nice feeling when you feel better after you’ve been sick. You don’t feel that ever again.
- 8A51C 3y ago
  Very accurate. The way I try to describe it, like a worn out recharchable battery- only charges to 80%, runs down quickly when you try to use it and takes ages to charge back up again. This is in some way trivialising the suffering, but I find helps people understand a little what it's like. At it's worst whilst I might be able to get out of bed and use the toilet, it takes a level of forethought, planning and effort that is unreasonable. Suffered with fatigue since stem cell transplant in 2011.
  - freedomben 3y ago
    Yes, people don't understand that even very basic self care like brushing your teeth or going to the can be completely overwhelming. Just receiving a text or an email when you're feeling can be crushing
  - quickthrower2 3y ago
    Sorry to hear that. I am embarrassing mild compared to most stories I read on r/cfs (which is why I just lurk) It has taken years to build back up to almost full time work without it being a boom/bust affair. I can’t imagine the more severe cases because you need energy to manage the problem, like a catch 22.
- qwertox 3y ago
  Thank you for sharing this. I won't tell my situation, but at least I know that exercising does help me, so CFS is very likely not the problem.

jwells89 3y ago

To make all this worse, I believe the issues outlined may be magnified by distance from major urban centers. I have family in a rural part of the US and the quality of care immediately available there is poor, with only marginally better treatment available within an hour’s drive. To have more options than that, one is faced with a multi-hour drive and most major metros where quality care is most plentiful is several hours away. There’s been several people I’ve known or heard of out there who’ve for years not been able to pin down exactly what the root causes of their ailments are because the local physicians aren’t thorough and/or knowledgeable enough. It’s especially problematic for those on the older end of the age spectrum who even if they’re still able to drive, can’t manage such lengthy trips on their own very well.

spondylosaurus 3y ago
Absolutely. Hell, I live in a major urban center and the healthcare here still sucks. Years of getting the runaround and "Wow, that's so bizarre, you should go to the Mayo Clinic to find out what's wrong with you" only for an answer to emerge from something as banal as a colonoscopy. On that note, I maintain that the opioid epidemic hit the US uniquely hard precisely because of the lack of access you describe. (And I'm always surprised how few conversations re. the opioid crisis ever mention it.) When it's hard to find doctors, when it's expensive and time-consuming to visit them, when tests aren't offered or are too expensive and time-consuming for people to pursue them, when the medication for the condition they finally get diagnosed with is expensive and requires you to jump through a million prior authorization hoops to acquire... of course they turn to cheap, generic painkillers. We're not good at treating the underlying causes of pain, and the treatments that do exist are too often out of reach. We don't have adequate safety nets. People need to work, and it drives them to mask their symptoms.
- freedomben 3y ago
  painkillers aren't even an option anymore either, unless you're older (by that I mean 60+), and even then a lot of doctors are adopting policies of "we never prescribe narcotics"
- 3y ago

s1artibartfast 3y ago

I think people have strangely high expectations from doctors and medicine in general. They don't just want their problems to be diagnosed and fixed, but expect solutions to be determined and implemented in a way you dont see elsewhere. People don't go to their accountant and expect them to just find a way to make their taxes zero. I wonder if it stems from the fact that most medical problems people experience do have trivial and complete solutions, so that it isnt until people get older and more experienced that they realize not all problems are solvable. I work with dozens of doctors, and none of them are omniscient or omnipotent. They generally work hard, but dont have all the answers.