6 ms·

>Millions of people (in the US alone!) suffer from this illness and I think everyone has wondered, or heard it wondered, if it's imaginary. For all these peopl

>Millions of people (in the US alone!) suffer from this illness and I think everyone has wondered, or heard it wondered, if it's imaginary. For all these people to know there's something actually physically wrong with them is massive. IMO the broader issue is the stigma against mental illness. The leading hypothesis remains that chronic fatigue syndrome is a mental illness. Both your comment and the linked article imply a false dichotomy between "real" physical illness and "imaginary" mental illness. Mental illnesses are every bit as "real" as physical illnesses. They cause real suffering, real disability and real death. If chronic fatigue syndrome happens to have a psychological etiology, then sufferers still deserve compassion, effective treatment and proper research. The research in question has a relatively small sample size and only compares CFS patients with healthy volunteers. Identifying abnormalities in immunological or stress-response functioning may not be particularly useful in proving that CFS is "real" (i.e. non-psychological), because we have identified similar abnormalities in patients with depressive disorders. Some researchers argue that major depressive disorder may be an autoimmune disorder, although this is far from a mainstream opinion. https://doi.org/10.1073/pnas.1901274116 https://doi.org/10.1073/pnas.1901274116 https://doi.org/10.1371/journal.pone.0138904 https://doi.org/10.1371/journal.pone.0138904 https://doi.org/10.1016/j.it.2005.11.006 https://doi.org/10.1016/j.it.2005.11.006 https://doi.org/10.1016/j.pnpbp.2004.11.003 https://doi.org/10.1016/j.pnpbp.2004.11.003

GordonS 8y ago
I don't think CFS is a mental illness, and I haven't seen evidence that that's the "leading hypothesis" (I've been diagnosed with CFS, although that was before I was later diagnosed with nerve damage), so this is something I've read deeply on. CFS can absolutely cause mental illness though - constant fatigue, and sometimes pain, can take a terrible toll.
- cpncrunch 8y ago
  The evidence shows that CFS is triggered by stress or viral infections (which are physiologically stressful), and that it is associated with dysruptions to the HPA axis. Everyone I know who has recovered (including myself) has said that dealing with psychological issues is the most important factor in recovering.
  - GordonS 8y ago
    Some evidence sure, not "the" evidence. Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition.
    - cpncrunch 8y ago
      >Some evidence sure, not "the" evidence. At least 4 studies that looked at it all found that it was triggered by stress or viral infection. If you're aware of any other contrary evidence, I'm interested. >Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition. Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered. We tend not to post too much in CFS forums, though, due to the negativity and hostility towards recovered patients.
      - GordonS 8y ago
        > viral infections (which are physiologically stressful) There is evidence relating to viral infections, yes. But is it really necessary to refer to such infections being "physiologically stressful"? I just don't see the relevance of that. > Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered Sorry, I didn't mean to imply recovery wasn't possible, but re-reading my comment I can see how it might have come across that way.
        cpncrunch 8y ago
        >But is it really necessary to refer to such infections being "physiologically stressful"? I just don't see the relevance of that. Viral infections activate the HPA axis...that is what is meant by "physiologically stressful". See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1224723/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1224723/ The relevance is that stress seems to be the common factor as a trigger, and the stress system seems to be dysfunctional in CFS.
      - 8y ago
perseusmandate 8y ago
It isn't just that the suffering from mental illness is real, it causes very real physical health issues and deeply disrupts your body's hormonal makeup via the HPA axis. The strict delineation between physiological and psychological illnesses is mostly a Western construct and the unfortunate effect is that the CFS community has an obsession with proving that it is a 100% physical illness without any mental component. It shouldn't be necessary for them to assert that for them to be taken seriously. The same can be said of chronic Lyme, Fibromyalgia, IBS, many kinds of chronic pain One fascinating thing is that there are people with non-physiological dissociative seizures (classified as a DSM mental illness). This population is actually much less likely to admit that their mental wellbeing has an effect on the incidence of these seizures than patients with conventional ones
- mises 8y ago
  Careful not to swing too far the other way. In situations where physical treatments are an option (even if they would only help, not cure), it is important not to give such treatments if it is a mental illness as treatments have risks. If it is mental, mental illness treatment might actually help.
  - perseusmandate 8y ago
    If you look at the CFS forums they are trying all kinds of crazy experimental therapies, many of which have side-effects and few of which have any effects Another interesting correlary is the pelvic floor dysfunction world. It is mostly a stress based illness which is best addressed by mental health treatment and relaxation but some people have gotten tons of invasive surgeries with reason to think they would even be helpful
erentz 8y ago
> The leading hypothesis remains that chronic fatigue syndrome is a mental illness. According to who? At least in the USA I see no evidence of that. The research is all pointing towards dysautonomia, dysimmunity, and metabolic issues.
- cpncrunch 8y ago
  Those are all well known to be significantly influenced by stress, and all the evidence is pointing towards the stress system being central to CFS.
  - erentz 8y ago
    I disagree with your conclusion that it’s “the stress system”, but even if so, that’s not a mental illness then. Whatever is going on in CFS isn’t causing behavior or mood etc. changes. It’s causing physical changes, such as the measurable dysautonomia, measurable response on the 2day CPET, measurably response in the invasive CPET that Systrom has been doing, so on. Sure CFS patients do often get comorbid mental illness such as anxiety about their health and depression due to their illness, but you’ve got the direction inversed.
    - cpncrunch 8y ago
      If you look at the evidence, all the studies so far show that CFS is triggered by stress and/or viral infections, and that the HPA axis is dysrupted. So it isn't my "conclusion", it's just what the evidence is showing. Also, mental health is intrinsically linked to the stress system. Mental stress causes depression. https://link.springer.com/article/10.1007/s00213-016-4218-9 https://link.springer.com/article/10.1007/s00213-016-4218-9 If you talk to patients who have severe CFS and depression, you'll see that it isn't comorbid depression. Instead it is a fundamental symptom related to PEM. (See for example, Whitney Dafoe's description of his attacks). I had the same experience. The depression is not psychological (caused by thinking about the illness). Rather it is PEM, and comes on suddenly after exertion. That is not "comorbid".
      - 8y ago
tempguy9999 8y ago
> IMO the broader issue is the stigma against mental illness Yeah yeah that rubbish again. I have mental illness (see my posts for boring details) and I've always been open about it, except when it's so obvious that people pick up on it without my assistance. I've never had a problem. Stop saying there is a stigma. Any stigma may be down much more to the individual's anticipation of stigma which might cause them to not admit stuff, but my experience is society (UK anyway) is very tolerant of it. You're really not helping. There's no frigging stigma for mental illness alone. If it causes someone to reek or act unpredictably there might be, but it's a reaction to the sad manifestations, not the illness per se. NB. I contacted a company I'd previously contracted for, explained the situation, met some of the guys, became evidently stressed in front of them (people + noise get overwhelming quickly), and now I'm working for them. It gives me summat to do and to get used to social situations again, and they get a DB guy. Win/win! No drama. So I repeat, STOP claiming this crap. You're making it harder for people who have to deal with it. (Edit: no argument with the rest of your post)
- jdietrich 8y ago
  https://doi.org/10.1111/acps.12610 https://doi.org/10.1111/acps.12610 https://doi.org/10.1177/0840470416679413 https://doi.org/10.1177/0840470416679413 https://www.ncbi.nlm.nih.gov/pubmed/16946807 https://www.ncbi.nlm.nih.gov/pubmed/16946807
  - tempguy9999 8y ago
    Studies: now that's a commendable rebuttal. I like that. OK, I've skimmed these, let's take some quotes. "People with lived experience of a mental illness commonly report feeling devalued, dismissed, and dehumanized by many of the health professionals with whom they come into contact" People who have such problems too easily perceive slights that may not be there. I know this, I have to compensate for it. It's too easy to get hurt. "On the other, they [people with serious mental illness] are challenged by the stereotypes and prejudice that result from misconceptions about mental illness" And I just don't find this. Bar a few idiots, never have. I find people kind and considerate. "As a result of both, people with mental illness are robbed of the opportunities that define a quality life: good jobs, safe housing, satisfactory health care, and affiliation with a diverse group of people" Quite, but that loss in my case is not down to stigma or discrimination by others but my own shortcomings caused by the problems: I don't have a good job, I haven't been able to work for months. That's not discrimination, that's because I'm unwell and just couldn't. A while back I got so far behind with the rent (because I couldn't work) the landlord had every right to throw me out. That he didn't only reflected on his decency and trust in me, but for that I'd quite likely be on the streets. This "affiliation with a diverse group of people" - I don't have that because, fuck, guess why? And loneliness is a terrible thing. I've had few partners in my life, guess again why? It's not because they discriminated against me, it's because I'm not 'normal' to be around (though getting better, thanks for asking). It's not discrimination, it's them picking the more suitable partner. And I just can't blame them! Does that make sense? Anyway, since I've read yours, please read mine. You sound like you do actual research, but unfortunately this nastiness is my life. https://news.ycombinator.com/item?id=19767632 https://news.ycombinator.com/item?id=19767632 https://news.ycombinator.com/item?id=19767742 https://news.ycombinator.com/item?id=19767742 https://news.ycombinator.com/item?id=19767906 https://news.ycombinator.com/item?id=19767906
rfugger 8y ago
The issue with CFS isn't to do with stigma against mental illness. It's with the mainstream medical community being uninterested in anything other than mental health treatments for a disease that clearly has a physical (viral/immune) component in the vast majority of cases. There are drugs for depression, and vast amounts of research has gone into their development. Why no similar research effort into drugs for CFS? It's not because we don't know what causes it -- we don't know what causes depression in many cases. It's not because there aren't enough sufferers -- there are millions. It's not because of lack of demand, or lack of existing costs to medical systems, or anything like that. It's because the medical establishment doesn't really think CFS is a thing. They don't care about it, they don't pay attention to it, they don't see it as real. It's not a fatal disease in the same way that cancer is, and its symptoms sound like a teenager complaining about not wanting to go to school. The answer, as far as the medical establishment is concerned, is that nothing's really terribly wrong, buck up, and you'll be better soon. Oh, and take these antidepressants. Any mental illness inevitably brought on by being chronically physically ill (and not really believed) is pointed to as the underlying issue. (I mean the above to represent how the medical community collectively sees CFS. There are certainly individuals within the community who take it very seriously. There are simply too few of them, and too few in positions of authority. And, to be fair, as I commented below, it can be very difficult to distinguish between CFS and a neurotic who just needs to be told they are fine and sent home, especially if you only have a very short time to interview them.) It's upsetting, but it's easy to see how a bunch of what seem like tired, unhappy people with normal blood tests aren't leaping out as needing special attention. That's why a biomarker is massive. All of a sudden the medical community has to pay attention, will want to pay attention. It's a huge new drug market, if nothing else... Let's hope this biomarker holds up under further tests. There's still a long way to go before I get too excited.
tigershark 8y ago
Can you please explain me how can be something that happens physically in white blood cells and their plasma a psychological illness?
- skellington 8y ago
  Because your mind heavily affects the environment in which your cells live through hormonal and other system regulation (epigenetics). A mind that is constantly stressed (for example) causes your body to be in a different hormonal state than a mind that is relaxed. This in turn can (perhaps) lead to or sustain cell dysfunction (poor immune system response, etc). Mind and body are a system. This is not woo woo, this is documented but poorly understood (placebo effect for example). Also, none of the above implies that the mind is the cause of all disease.
whalabi 8y ago
You're right, I should've worded this more carefully. What I meant is, there's people out there who dismiss this illness and I believe there's sufferers who have to fight to convince people that what they're going through is "real". So for there to be physical evidence of something going on can only help everyone involved. I didn't mean to suggest that without a clear physical marker that an illness isn't real, just that there are people who wrongly dismiss an illness without a physical marker.

GordonS 8y ago

I don't think CFS is a mental illness, and I haven't seen evidence that that's the "leading hypothesis" (I've been diagnosed with CFS, although that was before I was later diagnosed with nerve damage), so this is something I've read deeply on. CFS can absolutely cause mental illness though - constant fatigue, and sometimes pain, can take a terrible toll.

cpncrunch 8y ago
The evidence shows that CFS is triggered by stress or viral infections (which are physiologically stressful), and that it is associated with dysruptions to the HPA axis. Everyone I know who has recovered (including myself) has said that dealing with psychological issues is the most important factor in recovering.
- GordonS 8y ago
  Some evidence sure, not "the" evidence. Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition.
  - cpncrunch 8y ago
    >Some evidence sure, not "the" evidence. At least 4 studies that looked at it all found that it was triggered by stress or viral infection. If you're aware of any other contrary evidence, I'm interested. >Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition. Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered. We tend not to post too much in CFS forums, though, due to the negativity and hostility towards recovered patients.
    - GordonS 8y ago
      > viral infections (which are physiologically stressful) There is evidence relating to viral infections, yes. But is it really necessary to refer to such infections being "physiologically stressful"? I just don't see the relevance of that. > Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered Sorry, I didn't mean to imply recovery wasn't possible, but re-reading my comment I can see how it might have come across that way.
      - cpncrunch 8y ago
        >But is it really necessary to refer to such infections being "physiologically stressful"? I just don't see the relevance of that. Viral infections activate the HPA axis...that is what is meant by "physiologically stressful". See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1224723/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1224723/ The relevance is that stress seems to be the common factor as a trigger, and the stress system seems to be dysfunctional in CFS.
    - 8y ago

perseusmandate 8y ago

It isn't just that the suffering from mental illness is real, it causes very real physical health issues and deeply disrupts your body's hormonal makeup via the HPA axis. The strict delineation between physiological and psychological illnesses is mostly a Western construct and the unfortunate effect is that the CFS community has an obsession with proving that it is a 100% physical illness without any mental component. It shouldn't be necessary for them to assert that for them to be taken seriously. The same can be said of chronic Lyme, Fibromyalgia, IBS, many kinds of chronic pain One fascinating thing is that there are people with non-physiological dissociative seizures (classified as a DSM mental illness). This population is actually much less likely to admit that their mental wellbeing has an effect on the incidence of these seizures than patients with conventional ones

mises 8y ago
Careful not to swing too far the other way. In situations where physical treatments are an option (even if they would only help, not cure), it is important not to give such treatments if it is a mental illness as treatments have risks. If it is mental, mental illness treatment might actually help.
- perseusmandate 8y ago
  If you look at the CFS forums they are trying all kinds of crazy experimental therapies, many of which have side-effects and few of which have any effects Another interesting correlary is the pelvic floor dysfunction world. It is mostly a stress based illness which is best addressed by mental health treatment and relaxation but some people have gotten tons of invasive surgeries with reason to think they would even be helpful

erentz 8y ago

> The leading hypothesis remains that chronic fatigue syndrome is a mental illness. According to who? At least in the USA I see no evidence of that. The research is all pointing towards dysautonomia, dysimmunity, and metabolic issues.

cpncrunch 8y ago
Those are all well known to be significantly influenced by stress, and all the evidence is pointing towards the stress system being central to CFS.
- erentz 8y ago
  I disagree with your conclusion that it’s “the stress system”, but even if so, that’s not a mental illness then. Whatever is going on in CFS isn’t causing behavior or mood etc. changes. It’s causing physical changes, such as the measurable dysautonomia, measurable response on the 2day CPET, measurably response in the invasive CPET that Systrom has been doing, so on. Sure CFS patients do often get comorbid mental illness such as anxiety about their health and depression due to their illness, but you’ve got the direction inversed.
  - cpncrunch 8y ago
    If you look at the evidence, all the studies so far show that CFS is triggered by stress and/or viral infections, and that the HPA axis is dysrupted. So it isn't my "conclusion", it's just what the evidence is showing. Also, mental health is intrinsically linked to the stress system. Mental stress causes depression. https://link.springer.com/article/10.1007/s00213-016-4218-9 https://link.springer.com/article/10.1007/s00213-016-4218-9 If you talk to patients who have severe CFS and depression, you'll see that it isn't comorbid depression. Instead it is a fundamental symptom related to PEM. (See for example, Whitney Dafoe's description of his attacks). I had the same experience. The depression is not psychological (caused by thinking about the illness). Rather it is PEM, and comes on suddenly after exertion. That is not "comorbid".
    - 8y ago

tempguy9999 8y ago

> IMO the broader issue is the stigma against mental illness Yeah yeah that rubbish again. I have mental illness (see my posts for boring details) and I've always been open about it, except when it's so obvious that people pick up on it without my assistance. I've never had a problem. Stop saying there is a stigma. Any stigma may be down much more to the individual's anticipation of stigma which might cause them to not admit stuff, but my experience is society (UK anyway) is very tolerant of it. You're really not helping. There's no frigging stigma for mental illness alone. If it causes someone to reek or act unpredictably there might be, but it's a reaction to the sad manifestations, not the illness per se. NB. I contacted a company I'd previously contracted for, explained the situation, met some of the guys, became evidently stressed in front of them (people + noise get overwhelming quickly), and now I'm working for them. It gives me summat to do and to get used to social situations again, and they get a DB guy. Win/win! No drama. So I repeat, STOP claiming this crap. You're making it harder for people who have to deal with it. (Edit: no argument with the rest of your post)

jdietrich 8y ago
https://doi.org/10.1111/acps.12610 https://doi.org/10.1111/acps.12610 https://doi.org/10.1177/0840470416679413 https://doi.org/10.1177/0840470416679413 https://www.ncbi.nlm.nih.gov/pubmed/16946807 https://www.ncbi.nlm.nih.gov/pubmed/16946807
- tempguy9999 8y ago
  Studies: now that's a commendable rebuttal. I like that. OK, I've skimmed these, let's take some quotes. "People with lived experience of a mental illness commonly report feeling devalued, dismissed, and dehumanized by many of the health professionals with whom they come into contact" People who have such problems too easily perceive slights that may not be there. I know this, I have to compensate for it. It's too easy to get hurt. "On the other, they [people with serious mental illness] are challenged by the stereotypes and prejudice that result from misconceptions about mental illness" And I just don't find this. Bar a few idiots, never have. I find people kind and considerate. "As a result of both, people with mental illness are robbed of the opportunities that define a quality life: good jobs, safe housing, satisfactory health care, and affiliation with a diverse group of people" Quite, but that loss in my case is not down to stigma or discrimination by others but my own shortcomings caused by the problems: I don't have a good job, I haven't been able to work for months. That's not discrimination, that's because I'm unwell and just couldn't. A while back I got so far behind with the rent (because I couldn't work) the landlord had every right to throw me out. That he didn't only reflected on his decency and trust in me, but for that I'd quite likely be on the streets. This "affiliation with a diverse group of people" - I don't have that because, fuck, guess why? And loneliness is a terrible thing. I've had few partners in my life, guess again why? It's not because they discriminated against me, it's because I'm not 'normal' to be around (though getting better, thanks for asking). It's not discrimination, it's them picking the more suitable partner. And I just can't blame them! Does that make sense? Anyway, since I've read yours, please read mine. You sound like you do actual research, but unfortunately this nastiness is my life. https://news.ycombinator.com/item?id=19767632 https://news.ycombinator.com/item?id=19767632 https://news.ycombinator.com/item?id=19767742 https://news.ycombinator.com/item?id=19767742 https://news.ycombinator.com/item?id=19767906 https://news.ycombinator.com/item?id=19767906

rfugger 8y ago

The issue with CFS isn't to do with stigma against mental illness. It's with the mainstream medical community being uninterested in anything other than mental health treatments for a disease that clearly has a physical (viral/immune) component in the vast majority of cases. There are drugs for depression, and vast amounts of research has gone into their development. Why no similar research effort into drugs for CFS? It's not because we don't know what causes it -- we don't know what causes depression in many cases. It's not because there aren't enough sufferers -- there are millions. It's not because of lack of demand, or lack of existing costs to medical systems, or anything like that. It's because the medical establishment doesn't really think CFS is a thing. They don't care about it, they don't pay attention to it, they don't see it as real. It's not a fatal disease in the same way that cancer is, and its symptoms sound like a teenager complaining about not wanting to go to school. The answer, as far as the medical establishment is concerned, is that nothing's really terribly wrong, buck up, and you'll be better soon. Oh, and take these antidepressants. Any mental illness inevitably brought on by being chronically physically ill (and not really believed) is pointed to as the underlying issue. (I mean the above to represent how the medical community collectively sees CFS. There are certainly individuals within the community who take it very seriously. There are simply too few of them, and too few in positions of authority. And, to be fair, as I commented below, it can be very difficult to distinguish between CFS and a neurotic who just needs to be told they are fine and sent home, especially if you only have a very short time to interview them.) It's upsetting, but it's easy to see how a bunch of what seem like tired, unhappy people with normal blood tests aren't leaping out as needing special attention. That's why a biomarker is massive. All of a sudden the medical community has to pay attention, will want to pay attention. It's a huge new drug market, if nothing else... Let's hope this biomarker holds up under further tests. There's still a long way to go before I get too excited.

tigershark 8y ago

Can you please explain me how can be something that happens physically in white blood cells and their plasma a psychological illness?

skellington 8y ago
Because your mind heavily affects the environment in which your cells live through hormonal and other system regulation (epigenetics). A mind that is constantly stressed (for example) causes your body to be in a different hormonal state than a mind that is relaxed. This in turn can (perhaps) lead to or sustain cell dysfunction (poor immune system response, etc). Mind and body are a system. This is not woo woo, this is documented but poorly understood (placebo effect for example). Also, none of the above implies that the mind is the cause of all disease.

whalabi 8y ago

You're right, I should've worded this more carefully. What I meant is, there's people out there who dismiss this illness and I believe there's sufferers who have to fight to convince people that what they're going through is "real". So for there to be physical evidence of something going on can only help everyone involved. I didn't mean to suggest that without a clear physical marker that an illness isn't real, just that there are people who wrongly dismiss an illness without a physical marker.