6 ms·

Is there evidence of a well-defined physiological mechanism rather than merely being a symptom cluster that might be purely psychological? Some brief Googling

Is there evidence of a well-defined physiological mechanism rather than merely being a symptom cluster that might be purely psychological? Some brief Googling suggests that CFS is sometimes precipitated by various viral or bacterial infections, which is a step in the right direction, but I haven't read anything yet that rules out the alternative hypothesis that this is a (cluster of related) psychological disorders that is sometimes prompted by a life event. The dozen patient organizations campaigning for recognition is a bit of a red flag.

thatthatis 8y ago
Yes. Something called “post exertional malaise” which can be tested via the Stevens Protocol. In short, given the same exercise test two days in a row, normal people behave the same (slightly better even) but CFS patients degrade substantially. A variety of other tests such as tilt table tests, Cardio Pulmonary Exercise Tests (CPET) and Advanced Invasive CPET are also able to diagnose physical symptoms, and sometimes even treatable sub-sets of the condition.
zaptheimpaler 8y ago
That might be why its labeled a syndrome. In medicine, syndrome vs disease is exactly the distinction you're making. Syndrome refers to a set of symptoms, whereas disease is both a definite pathological process plus a set of symptoms caused by it.
- calvin 8y ago
  The “ME” is part of the name now for a reason. They have more information than symptoms alone. ME is the newer name for it, but CFS has been the more commonly used term. Title for post should be “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative”
  - cpncrunch 8y ago
    >ME is the newer name for it No, actually ME was the old name which was coined in the 1950s. It was eventually dropped in favour of Chronic Fatigue Syndrome in the 1990s when it was realised that there typically wasn't brain inflammation, and there wasn't always myalgia. The term ME was resurrected recently because it is more appealing to some patients, implying a more severe and physical illness.
    - mindgonehaywire 8y ago
      Incorrect. There are going to be studies showing that inflammation in the pipeline soon, but for now there is the Japanese paper from 2014. You know of it, Mr. 'research.' Melvin Ramsay & his colleagues didn't pull this out of thin air and you know it. Plus, the canard of 'it's more appealing because' is stuff and nonsense, much like the fanciful notions of how much damage stress can actually do. You're on the wrong side of this.
      - cpncrunch 8y ago
        The Japanese study [1] looked at immune (microgial) over-activation in the brain, which is different from actual inflammation of the brain or spinal cord (encephalitis or myelitis). Stress, anxiety and depression from psychosocial stressors are already known to cause neuroinflammation from microglial over-activation [2]. It is a little confusing that they use the term neuroinflammation for something that isn't really inflammation. [1] http://jnm.snmjournals.org/content/55/6/945.long http://jnm.snmjournals.org/content/55/6/945.long [2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5660717/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5660717/
monotone666 8y ago
Mitochondrial dysfunction is present in the vast majority of people with the condition.
- cpncrunch 8y ago
  That hasn't been replicated yet, and even if it was it wouldn't prove that the cause isn't psychological. https://www.sciencedirect.com/science/article/pii/S1043276007000690 https://www.sciencedirect.com/science/article/pii/S104327600... "The exquisitely orchestrated adaptive response to stressors that challenge the homeostasis of the cell and organism involves important changes in mitochondrial function"
deleted 8y ago
[deleted]
TACIXAT 8y ago
I'm a celiac and it is pretty annoying to hear people suggest something is psychological or (as it is often put) placebo. What makes it a red flag that people want recognition for a condition? Does it make them snowflakes if they want people to be aware that they are sick in a way that other people don't regularly experience? I would love for some recognition to the idea that food can make you sick, as I'm sure people with CFS would like awareness, more research, and solutions to their issues. Until you have evidence that it is purely psychological I would refrain from suggesting such.
- jessriedel 8y ago
  > Until you have evidence that it is purely psychological I would refrain from suggesting such. If there are a bunch of self-reported subjective symptoms with no biomarkers or any established physiological mechanism, I believe the null hypothesis would be psychological. (This is why, for instance, the symptoms of grief would be considered a psychological condition absent evidence to the contrary.) You might have specific arguments and evidence for having a different prior in this specific case, in which case I would like to hear them. > What makes it a red flag that people want recognition for a condition? People stand to gain socially and economically from having their symptoms classified as a physiological disease, so they are less likely to approach the evidence dispassionately. When much of the discussion online is provided by such advocacy group, we ought naturally be suspicious.
  - austinjp 8y ago
    The choice isn't binary physical or psychological. No biomarkers? How about: currently unknown biomarkers. And why the preoccupation with biomarkers anyway? What are the biomarkers for phantom limb pain or PTSD? A suggestion: spend a few months working with, listening to, and helping people before publicly declaring that you've got the measure of their problems.
  - mstroeck 8y ago
    The issue here is that you did some "brief googling" (your words) on a complicated, confusing, cutting-edge area of clinical research, and now feel competent to state your completely uninformed "null-hypothesis"... Here's some basic information: https://www.cdc.gov/me-cfs/index.html https://www.cdc.gov/me-cfs/index.html https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research https://www.nih.gov/news-events/news-releases/nih-announces-... http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS/MECFS.aspx http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS/MEC...
mstroeck 8y ago
ME/CFS is an under-researched, multi-system disease that affects people in a multitude of ways and is very hard to diagnose. There are no accepted bio-markers yet. There are, however, many well-respected researchers in the field, and more are beginning to enter it from all kinds of disciplines. Basically none of them think this is a psychosomatic illness. This is a good place to start for getting an overview of interesting current research: https://www.omf.ngo/the-end-mecfs-project-2/ https://www.omf.ngo/the-end-mecfs-project-2/
- jessriedel 8y ago
  Wouldn't the researchers entering this field be selected for thinking this? Their opinion seems less useful than, e.g., a position statement by an encompassing field.
  - mstroeck 8y ago
    I'm not sure what you mean by "position statement by an encompassing field."?
    - jessriedel 8y ago
      "Position statement" = collective statement by a group of experts on a topic. "Encompassing field" = group of medical experts who study a larger body of knowledge that includes CFS/ME as a subset. Like, in physics there is a big field of people who study dark matter, with subfields who specializes in certain (often mutually exclusive) hypotheses about what dark matter is made of, e.g., WIMPs, axions, etc. If I wanted to know whether a new hypothesis about dark matter was plausible, I'd want to hear what all the dark matter specialists thought, not just people who already committed to studying that particular hypothesis.
DubiousPusher 8y ago
First I want to say that determining something as Psychological doesn't put you in much better of a position than just saying something is a somatic condition we just don't understand yet. Secondly, to sufferers who are upset by this idea, please don't be. Yes, when the vast majority of people hear that a condition is psychological, they somehow think it's easier to deal with, less real, madeup or somehow not physical. This is wrong and any good physician will treat you with the exact same empathy and respect whether they believe something is psychogenic or somatic. Ok, with that out of the way, the answer to your question is yes and no. Some folks emphasize the comorbidity of ME/CFS with depression to try and establish ME/CFS as a psychogenic illness. Some cases of CFS improve with the introduction SSRIs. Which further embeds this belief. But its entirely possible that the depression is a result of the day-to-day suffering. And the improvement reported with SSRIs isn't just a result of the sufferer's generally improved disposition. The main difficulty with CFS is that it is currently a bucket diagnosis. So, you end with people in that bucket that have other diseases. For example, there are probably a good number of people in the CFS bucket that have an autoimmune disorder like Rheumatoid Arthritis or Spondylopathies because the mechanisms of diagnoses for these are somewhat unreliable and the effects of treatment are purely subjective if blood tests are consistently normal. Without some differentiator, it's really difficult to study the condition with confidence. Any effect or symptom sampling will be diluted if our bucket has multiple diseases in it. It's because of this that I think sufferers should resist the temptation to pitch their tent around the CFS flag. But I do understand the yearning to have a name by which to call your affliction.
- mstroeck 8y ago
  It is not generally true that physicians will treat people with somatic diseases well (or at all) if they personally believe symptoms are actually caused by psychological issues. This is an unproductive, even dangerous thing to tell sufferers.
- jessriedel 8y ago
  Thanks, I agree with basically all this. I would only mention that medicine has a better track record of developing treatments to disorders with a somatic cause than purely psychological ones.
rfugger 8y ago
The current gold standard test for chronic fatigue syndrome is repeated cardio-pulmonary exercise test (CPET). http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold-standard-test-for-mecfs/ http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold... Unfortunately, research into this disease is hugely underfunded relative to its societal impact. Even if it is a biopsychosocial condition, which I highly doubt, its effect on millions of sufferers begs for proven solutions. One of the more promising avenues currently is the metabolic trap hypothesis: https://www.healthrising.org/blog/2018/10/18/the-metabolic-trap-shines-during-the-symposium-on-the-molecular-basis-of-me-cfs-at-stanford/ https://www.healthrising.org/blog/2018/10/18/the-metabolic-t... I've suffered from CFS for 17 years, and spent 13 of those looking for a psychological solution, since all my blood tests were fine. Finally accepting the physical nature of my condition has led me to pacing my exertions so as to minimize my symptoms, which is a huge improvement. I would be completely willing to accept a psychological cure today if it actually worked. The best biopsychosocial research is the PACE trial into CBT and graded exercise therapy, which has been highly controversial in its methodology, but even taken at face value, has shown only marginal improvements, and certainly no objective end to disabling symptoms for any significant number of sufferers. (I'll let you look that one up since most sources are highly biased either pro or con.) I myself have tried both CBT and GET multiple times with no improvement in my condition.
- jessriedel 8y ago
  Thanks! This was the most useful comment I've received. > Even if it is a biopsychosocial condition, which I highly doubt, its effect on millions of sufferers begs for proven solutions. Definitely agree. The only caveat is that reliable, robust psychological interventions are harder to come by.
awalton 8y ago
> Is there evidence of a well-defined physiological mechanism rather than merely being a symptom cluster that might be purely psychological? Is there evidence of a well-defined psychological mechanism rather than merely a symptom cluster common to autoimmune diseases and various other immune system disorders? There seems to be a lot more evidence supporting CFS as an autoimmunity than any other avenue for explanation. It appears to be comorbid with numerous kinds of poor immune function, and often occurs after viral infections, frequently Epstein-Barr (so much so that one of its possible incarnations was even called "Post-Viral Fatigue Syndrome"). And like most autoimmune diseases, it favors diagnosis in women. As one paper puts it as clearly as possible: "The continuing debate as to whether myalgic encephalomyelitis or postviral syndrome is predominandy organic or psychological is unhelpful." And that was in 1990; we're even more clear that it has its roots in biology now. The medical community is at a consensus that there's an organic cause, they just don't have enough data collated or a good enough understanding of the immune system and its interaction with the disease process to know what it is. And that's not surprising - rheumatology in the context of autoimmunity is one of the youngest branches of medicine and our understanding of autoimmunity is very much in its infancy. Lupus was known about for centuries, but only conclusively proven to be an autoimmune disease in 1948-49. Frankly, at this point, with all of the collected evidence, over 9000 different scientific papers and three world-recognized medical agencies (the CDC, the NIH and the Institute of Medicine) in agreement that it's biological, suggesting it's all in the hundreds of thousands of sufferer's heads is pretty insulting. Maybe go educate yourself on the topic before lobbing such accusations?
- jessriedel 8y ago
  > Is there evidence of a well-defined psychological mechanism rather than merely a symptom cluster common to autoimmune diseases and various other immune system disorders? Are you asking if all autoimmune diseases can be detected by a single test. That doesn't really seem relevant. To my knowledge, all of the diseases that are confidently attributed to an autoimmune disorder do indeed have corresponding physiological evidence, with higher degrees of confidence when there are independent pieces of direct evidence. (One can imagine a case where there was overwhelming circumstantial evidence instead, but I've never heard of it; maybe you have an example in mind?) Autoimmune diseases generally have multiple common physiological features like excess inflammation, responsiveness to steroids (which suppress the immume system), or antinuclear antibodies (ANA). https://www.mayoclinic.org/tests-procedures/ana-test/about/pac-20385204 https://www.mayoclinic.org/tests-procedures/ana-test/about/p... The rest of your comment was much more helpful. Thanks! (Except for the part where you said I made accusations. I didn't.) > Lupus was known about for centuries, but only conclusively proven to be an autoimmune disease in 1948-49. Right, there are obviously lots of physiological diseases whose underlying causes aren't understood for a long time. But Lupus had objective (non-self-report) symptoms, giving doctors confidence in it was physiological. They were correctly unsure it was autoimmune until later evidence became available. > The medical community is at a consensus that there's an organic cause, Could you link to a consensus statement? I looked around a lot and all the documents i could find that reflect a consensus of experts like the CDC (rather than the opinion of individual researchers) were careful to never endorse a physiological mechanism, even an unknown one. https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research https://www.nih.gov/news-events/news-releases/nih-announces-... https://www.cdc.gov/me-cfs/about/index.html https://www.cdc.gov/me-cfs/about/index.html > ...they just don't have enough data collated or a good enough understanding of the immune system and its interaction with the disease process to know what it is Sorry, are you saying there is a consensus it's autoimmune, or just biological? There appear to be lots of non-autoimmune theories too.
MRD85 8y ago
Anecdotally I used to think that sufferers of Chronic Fatigue were suffering from psychological issues. Earlier this year I was diagnosed with EBV that led to a post viral illness (the first step in EBV becoming Chronic Fatigue). I saw a number of medical specialists and I would them that their diagnosis doesn't make sense. I'd never even heard of illness leading to Chronic Fatigue. Luckily I recovered, or am nearly 100% recovered, but it changed my mind on the illness.

thatthatis 8y ago

Yes. Something called “post exertional malaise” which can be tested via the Stevens Protocol. In short, given the same exercise test two days in a row, normal people behave the same (slightly better even) but CFS patients degrade substantially. A variety of other tests such as tilt table tests, Cardio Pulmonary Exercise Tests (CPET) and Advanced Invasive CPET are also able to diagnose physical symptoms, and sometimes even treatable sub-sets of the condition.

zaptheimpaler 8y ago

That might be why its labeled a syndrome. In medicine, syndrome vs disease is exactly the distinction you're making. Syndrome refers to a set of symptoms, whereas disease is both a definite pathological process plus a set of symptoms caused by it.

calvin 8y ago
The “ME” is part of the name now for a reason. They have more information than symptoms alone. ME is the newer name for it, but CFS has been the more commonly used term. Title for post should be “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative”
- cpncrunch 8y ago
  >ME is the newer name for it No, actually ME was the old name which was coined in the 1950s. It was eventually dropped in favour of Chronic Fatigue Syndrome in the 1990s when it was realised that there typically wasn't brain inflammation, and there wasn't always myalgia. The term ME was resurrected recently because it is more appealing to some patients, implying a more severe and physical illness.
  - mindgonehaywire 8y ago
    Incorrect. There are going to be studies showing that inflammation in the pipeline soon, but for now there is the Japanese paper from 2014. You know of it, Mr. 'research.' Melvin Ramsay & his colleagues didn't pull this out of thin air and you know it. Plus, the canard of 'it's more appealing because' is stuff and nonsense, much like the fanciful notions of how much damage stress can actually do. You're on the wrong side of this.
    - cpncrunch 8y ago
      The Japanese study [1] looked at immune (microgial) over-activation in the brain, which is different from actual inflammation of the brain or spinal cord (encephalitis or myelitis). Stress, anxiety and depression from psychosocial stressors are already known to cause neuroinflammation from microglial over-activation [2]. It is a little confusing that they use the term neuroinflammation for something that isn't really inflammation. [1] http://jnm.snmjournals.org/content/55/6/945.long http://jnm.snmjournals.org/content/55/6/945.long [2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5660717/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5660717/

monotone666 8y ago

Mitochondrial dysfunction is present in the vast majority of people with the condition.

cpncrunch 8y ago
That hasn't been replicated yet, and even if it was it wouldn't prove that the cause isn't psychological. https://www.sciencedirect.com/science/article/pii/S1043276007000690 https://www.sciencedirect.com/science/article/pii/S104327600... "The exquisitely orchestrated adaptive response to stressors that challenge the homeostasis of the cell and organism involves important changes in mitochondrial function"

deleted 8y ago

[deleted]

TACIXAT 8y ago

I'm a celiac and it is pretty annoying to hear people suggest something is psychological or (as it is often put) placebo. What makes it a red flag that people want recognition for a condition? Does it make them snowflakes if they want people to be aware that they are sick in a way that other people don't regularly experience? I would love for some recognition to the idea that food can make you sick, as I'm sure people with CFS would like awareness, more research, and solutions to their issues. Until you have evidence that it is purely psychological I would refrain from suggesting such.

jessriedel 8y ago
> Until you have evidence that it is purely psychological I would refrain from suggesting such. If there are a bunch of self-reported subjective symptoms with no biomarkers or any established physiological mechanism, I believe the null hypothesis would be psychological. (This is why, for instance, the symptoms of grief would be considered a psychological condition absent evidence to the contrary.) You might have specific arguments and evidence for having a different prior in this specific case, in which case I would like to hear them. > What makes it a red flag that people want recognition for a condition? People stand to gain socially and economically from having their symptoms classified as a physiological disease, so they are less likely to approach the evidence dispassionately. When much of the discussion online is provided by such advocacy group, we ought naturally be suspicious.
- austinjp 8y ago
  The choice isn't binary physical or psychological. No biomarkers? How about: currently unknown biomarkers. And why the preoccupation with biomarkers anyway? What are the biomarkers for phantom limb pain or PTSD? A suggestion: spend a few months working with, listening to, and helping people before publicly declaring that you've got the measure of their problems.
- mstroeck 8y ago
  The issue here is that you did some "brief googling" (your words) on a complicated, confusing, cutting-edge area of clinical research, and now feel competent to state your completely uninformed "null-hypothesis"... Here's some basic information: https://www.cdc.gov/me-cfs/index.html https://www.cdc.gov/me-cfs/index.html https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research https://www.nih.gov/news-events/news-releases/nih-announces-... http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS/MECFS.aspx http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS/MEC...

mstroeck 8y ago

ME/CFS is an under-researched, multi-system disease that affects people in a multitude of ways and is very hard to diagnose. There are no accepted bio-markers yet. There are, however, many well-respected researchers in the field, and more are beginning to enter it from all kinds of disciplines. Basically none of them think this is a psychosomatic illness. This is a good place to start for getting an overview of interesting current research: https://www.omf.ngo/the-end-mecfs-project-2/ https://www.omf.ngo/the-end-mecfs-project-2/

jessriedel 8y ago
Wouldn't the researchers entering this field be selected for thinking this? Their opinion seems less useful than, e.g., a position statement by an encompassing field.
- mstroeck 8y ago
  I'm not sure what you mean by "position statement by an encompassing field."?
  - jessriedel 8y ago
    "Position statement" = collective statement by a group of experts on a topic. "Encompassing field" = group of medical experts who study a larger body of knowledge that includes CFS/ME as a subset. Like, in physics there is a big field of people who study dark matter, with subfields who specializes in certain (often mutually exclusive) hypotheses about what dark matter is made of, e.g., WIMPs, axions, etc. If I wanted to know whether a new hypothesis about dark matter was plausible, I'd want to hear what all the dark matter specialists thought, not just people who already committed to studying that particular hypothesis.

DubiousPusher 8y ago

First I want to say that determining something as Psychological doesn't put you in much better of a position than just saying something is a somatic condition we just don't understand yet. Secondly, to sufferers who are upset by this idea, please don't be. Yes, when the vast majority of people hear that a condition is psychological, they somehow think it's easier to deal with, less real, madeup or somehow not physical. This is wrong and any good physician will treat you with the exact same empathy and respect whether they believe something is psychogenic or somatic. Ok, with that out of the way, the answer to your question is yes and no. Some folks emphasize the comorbidity of ME/CFS with depression to try and establish ME/CFS as a psychogenic illness. Some cases of CFS improve with the introduction SSRIs. Which further embeds this belief. But its entirely possible that the depression is a result of the day-to-day suffering. And the improvement reported with SSRIs isn't just a result of the sufferer's generally improved disposition. The main difficulty with CFS is that it is currently a bucket diagnosis. So, you end with people in that bucket that have other diseases. For example, there are probably a good number of people in the CFS bucket that have an autoimmune disorder like Rheumatoid Arthritis or Spondylopathies because the mechanisms of diagnoses for these are somewhat unreliable and the effects of treatment are purely subjective if blood tests are consistently normal. Without some differentiator, it's really difficult to study the condition with confidence. Any effect or symptom sampling will be diluted if our bucket has multiple diseases in it. It's because of this that I think sufferers should resist the temptation to pitch their tent around the CFS flag. But I do understand the yearning to have a name by which to call your affliction.

mstroeck 8y ago
It is not generally true that physicians will treat people with somatic diseases well (or at all) if they personally believe symptoms are actually caused by psychological issues. This is an unproductive, even dangerous thing to tell sufferers.
jessriedel 8y ago
Thanks, I agree with basically all this. I would only mention that medicine has a better track record of developing treatments to disorders with a somatic cause than purely psychological ones.

rfugger 8y ago

The current gold standard test for chronic fatigue syndrome is repeated cardio-pulmonary exercise test (CPET). http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold-standard-test-for-mecfs/ http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold... Unfortunately, research into this disease is hugely underfunded relative to its societal impact. Even if it is a biopsychosocial condition, which I highly doubt, its effect on millions of sufferers begs for proven solutions. One of the more promising avenues currently is the metabolic trap hypothesis: https://www.healthrising.org/blog/2018/10/18/the-metabolic-trap-shines-during-the-symposium-on-the-molecular-basis-of-me-cfs-at-stanford/ https://www.healthrising.org/blog/2018/10/18/the-metabolic-t... I've suffered from CFS for 17 years, and spent 13 of those looking for a psychological solution, since all my blood tests were fine. Finally accepting the physical nature of my condition has led me to pacing my exertions so as to minimize my symptoms, which is a huge improvement. I would be completely willing to accept a psychological cure today if it actually worked. The best biopsychosocial research is the PACE trial into CBT and graded exercise therapy, which has been highly controversial in its methodology, but even taken at face value, has shown only marginal improvements, and certainly no objective end to disabling symptoms for any significant number of sufferers. (I'll let you look that one up since most sources are highly biased either pro or con.) I myself have tried both CBT and GET multiple times with no improvement in my condition.

jessriedel 8y ago
Thanks! This was the most useful comment I've received. > Even if it is a biopsychosocial condition, which I highly doubt, its effect on millions of sufferers begs for proven solutions. Definitely agree. The only caveat is that reliable, robust psychological interventions are harder to come by.

awalton 8y ago

> Is there evidence of a well-defined physiological mechanism rather than merely being a symptom cluster that might be purely psychological? Is there evidence of a well-defined psychological mechanism rather than merely a symptom cluster common to autoimmune diseases and various other immune system disorders? There seems to be a lot more evidence supporting CFS as an autoimmunity than any other avenue for explanation. It appears to be comorbid with numerous kinds of poor immune function, and often occurs after viral infections, frequently Epstein-Barr (so much so that one of its possible incarnations was even called "Post-Viral Fatigue Syndrome"). And like most autoimmune diseases, it favors diagnosis in women. As one paper puts it as clearly as possible: "The continuing debate as to whether myalgic encephalomyelitis or postviral syndrome is predominandy organic or psychological is unhelpful." And that was in 1990; we're even more clear that it has its roots in biology now. The medical community is at a consensus that there's an organic cause, they just don't have enough data collated or a good enough understanding of the immune system and its interaction with the disease process to know what it is. And that's not surprising - rheumatology in the context of autoimmunity is one of the youngest branches of medicine and our understanding of autoimmunity is very much in its infancy. Lupus was known about for centuries, but only conclusively proven to be an autoimmune disease in 1948-49. Frankly, at this point, with all of the collected evidence, over 9000 different scientific papers and three world-recognized medical agencies (the CDC, the NIH and the Institute of Medicine) in agreement that it's biological, suggesting it's all in the hundreds of thousands of sufferer's heads is pretty insulting. Maybe go educate yourself on the topic before lobbing such accusations?

jessriedel 8y ago
> Is there evidence of a well-defined psychological mechanism rather than merely a symptom cluster common to autoimmune diseases and various other immune system disorders? Are you asking if all autoimmune diseases can be detected by a single test. That doesn't really seem relevant. To my knowledge, all of the diseases that are confidently attributed to an autoimmune disorder do indeed have corresponding physiological evidence, with higher degrees of confidence when there are independent pieces of direct evidence. (One can imagine a case where there was overwhelming circumstantial evidence instead, but I've never heard of it; maybe you have an example in mind?) Autoimmune diseases generally have multiple common physiological features like excess inflammation, responsiveness to steroids (which suppress the immume system), or antinuclear antibodies (ANA). https://www.mayoclinic.org/tests-procedures/ana-test/about/pac-20385204 https://www.mayoclinic.org/tests-procedures/ana-test/about/p... The rest of your comment was much more helpful. Thanks! (Except for the part where you said I made accusations. I didn't.) > Lupus was known about for centuries, but only conclusively proven to be an autoimmune disease in 1948-49. Right, there are obviously lots of physiological diseases whose underlying causes aren't understood for a long time. But Lupus had objective (non-self-report) symptoms, giving doctors confidence in it was physiological. They were correctly unsure it was autoimmune until later evidence became available. > The medical community is at a consensus that there's an organic cause, Could you link to a consensus statement? I looked around a lot and all the documents i could find that reflect a consensus of experts like the CDC (rather than the opinion of individual researchers) were careful to never endorse a physiological mechanism, even an unknown one. https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research https://www.nih.gov/news-events/news-releases/nih-announces-... https://www.cdc.gov/me-cfs/about/index.html https://www.cdc.gov/me-cfs/about/index.html > ...they just don't have enough data collated or a good enough understanding of the immune system and its interaction with the disease process to know what it is Sorry, are you saying there is a consensus it's autoimmune, or just biological? There appear to be lots of non-autoimmune theories too.

MRD85 8y ago

Anecdotally I used to think that sufferers of Chronic Fatigue were suffering from psychological issues. Earlier this year I was diagnosed with EBV that led to a post viral illness (the first step in EBV becoming Chronic Fatigue). I saw a number of medical specialists and I would them that their diagnosis doesn't make sense. I'd never even heard of illness leading to Chronic Fatigue. Luckily I recovered, or am nearly 100% recovered, but it changed my mind on the illness.