8 ms·

CFS is a controversial diagnosis.

by c3534l 9y ago

static_noise 9y ago
I fear that it's becoming a catchall-diagnosis for illnesses the doctors don't understand and can't cure. The current catchall is "it's psychosomatic" or "get over it already you lazy *". Most doctors can only handle diseases that can be cured by pills or cutting up the patient. With CFS we have something that seems to cleverly evade all attempts to cure it or even define what it actually is and how to properly diagnose it. I surely do hope that this changes soon!
- harryjo 9y ago
  The lack of an objective test is more problematic tan the lack of a cure.
  - lez 9y ago
    There are tests available, see: http://drmyhill.co.uk/wiki/Mitochondrial_Function_Profile http://drmyhill.co.uk/wiki/Mitochondrial_Function_Profile (and more on that page)
    - manmal 9y ago
      Dr Myhill is quite controversial, and many who followed her advice were not helped by it. Always take advice with a grain of salt if the advice giver peddles her own line of supplements.
  - manmal 9y ago
    There was very recently an article about a maybe-upcoming test: https://news.ycombinator.com/item?id=14896255 https://news.ycombinator.com/item?id=14896255
ekianjo 9y ago
kind of similar to fibromyalgia, also very difficult to diagnose with accuracy.
55555 9y ago
Any syndrome, almost by definition, isn't a highly meaningful diagnosis, as it's diagnosed by symptoms and exclusion. Once the mechanism is better understood, it'll become a disease and not a syndrome, but most likely it will split into multiple diseases (and even then many people will be left out, untreated). Imagine having Crohn's disease the year before it (or UC) was 'discovered.' You had a debilitating disease, but you were just told you had "really bad irritable bowel syndrome". Certain doctors would tell you that it was all in your head. Or at the least, they would be wholly unhelpful. The general public would be much worse. In my extensive experience, doctors are really, very much just people. Actually, they're often less helpful than regular people because they have extreme constraints on their time and against thinking for themselves (example of the latter: a close friend of mine was hospitalized for attempting suicide and they wouldn't give him benzodiazepines because of the __risk of addiction__). Sorry for the rant...
- evolve2017 9y ago
  I see what you're implying with your UC/Crohn's reference, but it actually underscores why CFS is so hard of a diagnosis. In UC/Crohn's, patients presented with recurrent bouts of bloody diarrhea in the absence of infectious symptoms, with possible associations of malabsorption, fistulas, and colon cancer. These are pretty straightforward things to diagnose and clearly represent pathology, irrespective of whether we can assign a name to them. CFS includes symptoms that don't fall so far from the range of 'normal' human experiences, thus it's much harder to define syndromically. IBS is an interesting choice for comparison, as it, like CFS, seems to be in part a psychiatric diagnosis at least as it relates to stress. Nothwithstanding, there are clear associations for IBS - chronic abnormal bowel movements and abdominal pain, neither of which is 'normal'.
- saalweachter 9y ago
  Re: doctors, I'd also like to point out that, while the goal of medicine as a whole is to prevent death & suffering, the goal of doctors is to prevent death & suffering from treatable causes. Individual doctors do better or worse at dealing with patients who fall off the map of known problems and solutions - from accusing patients of lying about symptoms to referring them to medical researchers to just explaining that there's not much they can do but keep an eye on the situation - but the most important thing, medically, is for the doctor to make sure that your symptoms don't have a known, treatable cause. Dying or suffering for years from a mysterious condition sucks; dying or suffering for years from a well-known condition that just went undiagnosed sucks worse.
deleted 9y ago
[deleted]

CFS is a controversial diagnosis.

by c3534l 9y ago

CFS is a controversial diagnosis.

I fear that it's becoming a catchall-diagnosis for illnesses the doctors don't understand and can't cure. The current catchall is "it's psychosomatic" or "get over it already you lazy *". Most doctors can only handle diseases that can be cured by pills or cutting up the patient. With CFS we have something that seems to cleverly evade all attempts to cure it or even define what it actually is and how to properly diagnose it. I surely do hope that this changes soon!

harryjo 9y ago
The lack of an objective test is more problematic tan the lack of a cure.
- lez 9y ago
  There are tests available, see: http://drmyhill.co.uk/wiki/Mitochondrial_Function_Profile http://drmyhill.co.uk/wiki/Mitochondrial_Function_Profile (and more on that page)
  - manmal 9y ago
    Dr Myhill is quite controversial, and many who followed her advice were not helped by it. Always take advice with a grain of salt if the advice giver peddles her own line of supplements.
- manmal 9y ago
  There was very recently an article about a maybe-upcoming test: https://news.ycombinator.com/item?id=14896255 https://news.ycombinator.com/item?id=14896255

ekianjo 9y ago

kind of similar to fibromyalgia, also very difficult to diagnose with accuracy.

55555 9y ago

Any syndrome, almost by definition, isn't a highly meaningful diagnosis, as it's diagnosed by symptoms and exclusion. Once the mechanism is better understood, it'll become a disease and not a syndrome, but most likely it will split into multiple diseases (and even then many people will be left out, untreated). Imagine having Crohn's disease the year before it (or UC) was 'discovered.' You had a debilitating disease, but you were just told you had "really bad irritable bowel syndrome". Certain doctors would tell you that it was all in your head. Or at the least, they would be wholly unhelpful. The general public would be much worse. In my extensive experience, doctors are really, very much just people. Actually, they're often less helpful than regular people because they have extreme constraints on their time and against thinking for themselves (example of the latter: a close friend of mine was hospitalized for attempting suicide and they wouldn't give him benzodiazepines because of the __risk of addiction__). Sorry for the rant...

evolve2017 9y ago
I see what you're implying with your UC/Crohn's reference, but it actually underscores why CFS is so hard of a diagnosis. In UC/Crohn's, patients presented with recurrent bouts of bloody diarrhea in the absence of infectious symptoms, with possible associations of malabsorption, fistulas, and colon cancer. These are pretty straightforward things to diagnose and clearly represent pathology, irrespective of whether we can assign a name to them. CFS includes symptoms that don't fall so far from the range of 'normal' human experiences, thus it's much harder to define syndromically. IBS is an interesting choice for comparison, as it, like CFS, seems to be in part a psychiatric diagnosis at least as it relates to stress. Nothwithstanding, there are clear associations for IBS - chronic abnormal bowel movements and abdominal pain, neither of which is 'normal'.
saalweachter 9y ago
Re: doctors, I'd also like to point out that, while the goal of medicine as a whole is to prevent death & suffering, the goal of doctors is to prevent death & suffering from treatable causes. Individual doctors do better or worse at dealing with patients who fall off the map of known problems and solutions - from accusing patients of lying about symptoms to referring them to medical researchers to just explaining that there's not much they can do but keep an eye on the situation - but the most important thing, medically, is for the doctor to make sure that your symptoms don't have a known, treatable cause. Dying or suffering for years from a mysterious condition sucks; dying or suffering for years from a well-known condition that just went undiagnosed sucks worse.

deleted 9y ago

[deleted]