7 ms·

As a near 10-year sufferer of severe ME/CFS, I can confirm this study has done unbelievable damage to the cause and should absolutely be retracted in full. Rece

by j374 10y ago

As a near 10-year sufferer of severe ME/CFS, I can confirm this study has done unbelievable damage to the cause and should absolutely be retracted in full. Recent research has identified unquestionable, tangible and severe abnormalities in immune and metabolic function that are unique and consistent to ME/CFS sufferers, and this is no longer realistically up for debate. Most doctors though still dismiss the condition as psychological, and because of this (and even though the burden has been shown worse than other immune disorders like AIDS in many cases) funding is virtually non-existent. This study has been so widely disseminated and taught to medical professionals, the damage will take some time to undo unfortunately.

Tycho 10y ago
What is the latest thinking with respect to the cause of the condition, and also the causes of recovery? Has research advanced much in the last few years?
- jomamaxx 10y ago
  "What is the latest thinking with respect to the cause of the condition" It's not really a 'condition' - rather, it's a series of symptoms they just lump together and give a name. They have no idea what it is, what causes it. It's very difficult to diagnose, other than patients are always 'tired'. And there are many different kinds of 'tired'. I thought I had it, but I wasn't sleeping enough and drinking too much red bull, not getting enough water, probably too much stress. Doctors had no clue. All I did was sleep regular hours, stopped drinking energy drinks, drank water - and over a few months I 'got better'. But it was a really weird experience. Some people get 'it' bad. My bet is that there are probably a number of reasons that people get it - some of it is psychosomatic - and that it might have something to do with a messed up endocrine system - i.e. the system that regulates melatonin, insulin etc..
  - Tycho 10y ago
    How much were you sleeping?
    - jomamaxx 10y ago
      5 hours.
  - ScottBurson 10y ago
    It's true that a "syndrome", by definition, is a collection of symptoms that seem to co-occur. And it's also true that there are many possible causes of low energy. But there seems to be one particular cause, not that anyone seems to know for sure what that is, that produces a set of symptoms that is more specific than generalized fatigue. The symptom sometimes called "post-exertional malaise" is, AFAIK, unique to this disease. One doesn't necessarily feel tired while exercising; instead, the tiredness (often accompanied by headaches and sometimes other symptoms) hits hours or even a day after the exercise. So when the OP writes "Instead of trying to continually increase my exercise, I’d learned to focus on staying within my ever-changing limits", I know she has the same thing I do, because that's my experience exactly. Whatever you had, in contrast, sounds like it had some other cause.
  - j374 10y ago
    All I did was sleep regular hours, stopped drinking energy drinks, drank water - and over a few months I 'got better'. You didn't have it, by any current definition of the disease (Canadian/Fukuda criteria). "Chronic fatigue syndrome" is an unfortunate misnomer - fatigue is one symptom but far from the only one.
    - cpncrunch 10y ago
      >You didn't have it, by any current definition of the disease (Canadian/Fukuda criteria). I'm not sure how you can determine that from the parent comment. >"Chronic fatigue syndrome" is an unfortunate misnomer - fatigue is one symptom but far from the only one. The parent comment never said he/she only had fatigue. In fact the mention of "symptoms" would kind of imply that fatigue wasn't his/her only symptom, wouldn't it?
    - jomamaxx 10y ago
      I had all the symptoms. Point blank. Ergo 'I had it' - because it's a condition defined by it's symptoms. The kind of 'fatigue' I had was very odd: it was not 'sleepy tired' and it was not 'energy tired'. I wasn't in need of a nap, and if I went to the gym, I kept my regular pace no problem. It was a weird tiredness that hit several times a day, and made me not want to do much. Granted, it was more mild than others. Granted, I may not have 'had' whatever causes it in others. Also - I did take a lot of 'pro-biotics' as well, basically it supposedly restores the bacteria in your gut. But it's not particularly scientific. I can tell you it was an odd feeling, unlike any other.
  - Gibbon1 10y ago
    Convergent symptomatology is a problem. Very hard to tease out what's going on when you have a group composed of people with different diseases (with same symptoms) plus perhaps a couple unusual presentations of somewhat normal diseases. The old run statistical regressions to find out what's going on fails completely.
- j-g-faustus 10y ago
  On the basis of having had a CFS/ME diagnosis for the past several years, and spending some time reading what I could find about it: There's no consensus yet, but there is a bunch of interesting research going on. Most of the theories I've seen fall in two broad categories: - An issue with the mitochondria, the energy production in the cells, that for some reason produce just a fraction of the energy they normally produce. So the fatigue is a result of insufficient energy production. I'm partial to this class of theories, since it seems to match so well with my experience. I particularly like the one I saw just a few days ago, explaining CFS/ME as a kind of evolutionary hibernation where the cells shut down in response to a real or imagininary threat, in the hope of outlasting the threat rather than fighting it [1]. - An issue with the immune system, which for some reason remains hyperactive even when there is nothing to fight as far as anyone can tell. So the fatigue is a result of the immune system consuming an inordinate amount of energy, just like if you were having the flu. According to these theories it might be an autoimmune disease where the immune system is effectively fighting ghosts [2], or the immune system might be busy with an actual threat that the standard tests don't pick up [3]. I don't know if both groups of theories can be true at the same time - e.g. if one is a cause and the other is an effect, or maybe they are both effects - or whether we're talking about different subsets of patients with different underlying causes. Unlike my sibling post, I think it's a genuine condition. I agree that the current diagnostic criteria basically boil down to "unreasonably fatigued and we don't know why". But I've met a number of other people with the same diagnosis, and there are too many similarities for us to be just an arbitrary collection of tired people. Maybe there are two or three distinct subgroups with different underlying causes, maybe there are a handful that has been misdiagnosed. But I'm sure there's something there. For recovery, we don't know yet. A number of things have worked for a number of different people, some people eventually get better on their own. Long term and in general, we will hopefully know more in a few years. [1] http://www.healthrising.org/blog/2016/09/01/metabolomics-naviaux-chronic-fatigue-syndrome-core-problem/ http://www.healthrising.org/blog/2016/09/01/metabolomics-nav... [2] http://www.tv2.no/a/3615631 http://www.tv2.no/a/3615631 - cancer drugs help for some patients according to study (by killing off the immune system) [3] https://www.sciencedaily.com/releases/2016/06/160627160939.htm https://www.sciencedaily.com/releases/2016/06/160627160939.h... - gut bacteria
  - 10y ago
M_Grey 10y ago
I'd love to read more about those abnormalities, do you have any links to those studies?
- j374 10y ago
  There is a fairly comprehensive summary of recent research on [1] (not sure who curated it). Since then there has also been a significant metabolic study [2]. 1. https://drive.google.com/file/d/0B_Dn3IXWlI9fR01QamdNeUNqZjA/view?pref=2&pli=1 https://drive.google.com/file/d/0B_Dn3IXWlI9fR01QamdNeUNqZjA... 2. http://www.pnas.org/content/113/37/E5472.full.pdf http://www.pnas.org/content/113/37/E5472.full.pdf
  - M_Grey 10y ago
    The Google drive link seems not to be working for me, but I'll try another computer. That pnas link looks extremely interesting, and I'll give it a thorough read. Thanks very much for the information.
    - j374 10y ago
      Weird, works for me on a fresh browser. If you can't access it I can upload elsewhere as it's definitely worth a read :)
      - M_Grey 10y ago
        I switched over to another browser and it's working fine, thanks for the links. I agree that it was definitely worth the read.
  - cpncrunch 10y ago
    The Naviaux study hasn't been replicated yet, and in fact another recent study found completely different metabolic abnormalities. So it might just be random differences.
cpncrunch 10y ago
A couple of points: - the study hasn't done "unbelievable damage", unless you're firmly in the camp that CFS must be organic. - "severe abnormalities in immune and metabolic function" doesn't rule out psychosomatic causation (as the stress system also controls the immune system and mitochondria, for example). - there is no "unique and consistent to ME/CFS sufferers" dysfunction, except perhaps in HPA axis (the main stress system) responsiveness (but even this is somewhat up for debate). - Saying it is psychological is not "dismissing" it. From what I can tell (having suffered from it, and researched it), psychosomatic causation does seem the most plausible. The symptoms, abnormalities, triggers and cures match perfectly with what you would expect from exhaustion due to chronic stress.
- CydeWeys 10y ago
  > unless you're firmly in the camp that CFS must be organic. What does "organic" mean in this context? Given that it's an affliction of humans, I don't really understand how it could be non-organic.
  - cpncrunch 10y ago
    or·gan·ic dis·ease a disease in which anatomic or pathophysiologic changes occur in some bodily tissue or organ, in contrast to a functional disorder; particularly one of psychogenic origin. (this is the medical definition of "organic", which is completely different to the chemistry definition, which I think you confused it with).
- jsjohns2 10y ago
  > - there is no "unique and consistent to ME/CFS sufferers" dysfunction, except perhaps in HPA axis (the main stress system) responsiveness (but even this is somewhat up for debate). This is at odds with the current scientific consensus. Table 1 of "Myalgic encephalomyelitis: International Consensus Criteria" (2011) describes one primary dysfunction (postexertional neuroimmune exhaustion) and several secondary dysfunctions [1]. Furthermore, post-exertional malaise, which is similar to postexertional neuroimmune exhaustion, has been described as a "hallmark" symptom of ME/CFS at least as far back as 2007 [2]. [1] http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.... [2] http://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07 http://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07

by j374 10y ago

Tycho 10y ago

What is the latest thinking with respect to the cause of the condition, and also the causes of recovery? Has research advanced much in the last few years?

jomamaxx 10y ago
"What is the latest thinking with respect to the cause of the condition" It's not really a 'condition' - rather, it's a series of symptoms they just lump together and give a name. They have no idea what it is, what causes it. It's very difficult to diagnose, other than patients are always 'tired'. And there are many different kinds of 'tired'. I thought I had it, but I wasn't sleeping enough and drinking too much red bull, not getting enough water, probably too much stress. Doctors had no clue. All I did was sleep regular hours, stopped drinking energy drinks, drank water - and over a few months I 'got better'. But it was a really weird experience. Some people get 'it' bad. My bet is that there are probably a number of reasons that people get it - some of it is psychosomatic - and that it might have something to do with a messed up endocrine system - i.e. the system that regulates melatonin, insulin etc..
- Tycho 10y ago
  How much were you sleeping?
  - jomamaxx 10y ago
    5 hours.
- ScottBurson 10y ago
  It's true that a "syndrome", by definition, is a collection of symptoms that seem to co-occur. And it's also true that there are many possible causes of low energy. But there seems to be one particular cause, not that anyone seems to know for sure what that is, that produces a set of symptoms that is more specific than generalized fatigue. The symptom sometimes called "post-exertional malaise" is, AFAIK, unique to this disease. One doesn't necessarily feel tired while exercising; instead, the tiredness (often accompanied by headaches and sometimes other symptoms) hits hours or even a day after the exercise. So when the OP writes "Instead of trying to continually increase my exercise, I’d learned to focus on staying within my ever-changing limits", I know she has the same thing I do, because that's my experience exactly. Whatever you had, in contrast, sounds like it had some other cause.
- j374 10y ago
  All I did was sleep regular hours, stopped drinking energy drinks, drank water - and over a few months I 'got better'. You didn't have it, by any current definition of the disease (Canadian/Fukuda criteria). "Chronic fatigue syndrome" is an unfortunate misnomer - fatigue is one symptom but far from the only one.
  - cpncrunch 10y ago
    >You didn't have it, by any current definition of the disease (Canadian/Fukuda criteria). I'm not sure how you can determine that from the parent comment. >"Chronic fatigue syndrome" is an unfortunate misnomer - fatigue is one symptom but far from the only one. The parent comment never said he/she only had fatigue. In fact the mention of "symptoms" would kind of imply that fatigue wasn't his/her only symptom, wouldn't it?
  - jomamaxx 10y ago
    I had all the symptoms. Point blank. Ergo 'I had it' - because it's a condition defined by it's symptoms. The kind of 'fatigue' I had was very odd: it was not 'sleepy tired' and it was not 'energy tired'. I wasn't in need of a nap, and if I went to the gym, I kept my regular pace no problem. It was a weird tiredness that hit several times a day, and made me not want to do much. Granted, it was more mild than others. Granted, I may not have 'had' whatever causes it in others. Also - I did take a lot of 'pro-biotics' as well, basically it supposedly restores the bacteria in your gut. But it's not particularly scientific. I can tell you it was an odd feeling, unlike any other.
- Gibbon1 10y ago
  Convergent symptomatology is a problem. Very hard to tease out what's going on when you have a group composed of people with different diseases (with same symptoms) plus perhaps a couple unusual presentations of somewhat normal diseases. The old run statistical regressions to find out what's going on fails completely.
j-g-faustus 10y ago
On the basis of having had a CFS/ME diagnosis for the past several years, and spending some time reading what I could find about it: There's no consensus yet, but there is a bunch of interesting research going on. Most of the theories I've seen fall in two broad categories: - An issue with the mitochondria, the energy production in the cells, that for some reason produce just a fraction of the energy they normally produce. So the fatigue is a result of insufficient energy production. I'm partial to this class of theories, since it seems to match so well with my experience. I particularly like the one I saw just a few days ago, explaining CFS/ME as a kind of evolutionary hibernation where the cells shut down in response to a real or imagininary threat, in the hope of outlasting the threat rather than fighting it [1]. - An issue with the immune system, which for some reason remains hyperactive even when there is nothing to fight as far as anyone can tell. So the fatigue is a result of the immune system consuming an inordinate amount of energy, just like if you were having the flu. According to these theories it might be an autoimmune disease where the immune system is effectively fighting ghosts [2], or the immune system might be busy with an actual threat that the standard tests don't pick up [3]. I don't know if both groups of theories can be true at the same time - e.g. if one is a cause and the other is an effect, or maybe they are both effects - or whether we're talking about different subsets of patients with different underlying causes. Unlike my sibling post, I think it's a genuine condition. I agree that the current diagnostic criteria basically boil down to "unreasonably fatigued and we don't know why". But I've met a number of other people with the same diagnosis, and there are too many similarities for us to be just an arbitrary collection of tired people. Maybe there are two or three distinct subgroups with different underlying causes, maybe there are a handful that has been misdiagnosed. But I'm sure there's something there. For recovery, we don't know yet. A number of things have worked for a number of different people, some people eventually get better on their own. Long term and in general, we will hopefully know more in a few years. [1] http://www.healthrising.org/blog/2016/09/01/metabolomics-naviaux-chronic-fatigue-syndrome-core-problem/ http://www.healthrising.org/blog/2016/09/01/metabolomics-nav... [2] http://www.tv2.no/a/3615631 http://www.tv2.no/a/3615631 - cancer drugs help for some patients according to study (by killing off the immune system) [3] https://www.sciencedaily.com/releases/2016/06/160627160939.htm https://www.sciencedaily.com/releases/2016/06/160627160939.h... - gut bacteria
- 10y ago

M_Grey 10y ago

I'd love to read more about those abnormalities, do you have any links to those studies?

j374 10y ago
There is a fairly comprehensive summary of recent research on [1] (not sure who curated it). Since then there has also been a significant metabolic study [2]. 1. https://drive.google.com/file/d/0B_Dn3IXWlI9fR01QamdNeUNqZjA/view?pref=2&pli=1 https://drive.google.com/file/d/0B_Dn3IXWlI9fR01QamdNeUNqZjA... 2. http://www.pnas.org/content/113/37/E5472.full.pdf http://www.pnas.org/content/113/37/E5472.full.pdf
- M_Grey 10y ago
  The Google drive link seems not to be working for me, but I'll try another computer. That pnas link looks extremely interesting, and I'll give it a thorough read. Thanks very much for the information.
  - j374 10y ago
    Weird, works for me on a fresh browser. If you can't access it I can upload elsewhere as it's definitely worth a read :)
    - M_Grey 10y ago
      I switched over to another browser and it's working fine, thanks for the links. I agree that it was definitely worth the read.
- cpncrunch 10y ago
  The Naviaux study hasn't been replicated yet, and in fact another recent study found completely different metabolic abnormalities. So it might just be random differences.

cpncrunch 10y ago

A couple of points: - the study hasn't done "unbelievable damage", unless you're firmly in the camp that CFS must be organic. - "severe abnormalities in immune and metabolic function" doesn't rule out psychosomatic causation (as the stress system also controls the immune system and mitochondria, for example). - there is no "unique and consistent to ME/CFS sufferers" dysfunction, except perhaps in HPA axis (the main stress system) responsiveness (but even this is somewhat up for debate). - Saying it is psychological is not "dismissing" it. From what I can tell (having suffered from it, and researched it), psychosomatic causation does seem the most plausible. The symptoms, abnormalities, triggers and cures match perfectly with what you would expect from exhaustion due to chronic stress.

CydeWeys 10y ago
> unless you're firmly in the camp that CFS must be organic. What does "organic" mean in this context? Given that it's an affliction of humans, I don't really understand how it could be non-organic.
- cpncrunch 10y ago
  or·gan·ic dis·ease a disease in which anatomic or pathophysiologic changes occur in some bodily tissue or organ, in contrast to a functional disorder; particularly one of psychogenic origin. (this is the medical definition of "organic", which is completely different to the chemistry definition, which I think you confused it with).
jsjohns2 10y ago
> - there is no "unique and consistent to ME/CFS sufferers" dysfunction, except perhaps in HPA axis (the main stress system) responsiveness (but even this is somewhat up for debate). This is at odds with the current scientific consensus. Table 1 of "Myalgic encephalomyelitis: International Consensus Criteria" (2011) describes one primary dysfunction (postexertional neuroimmune exhaustion) and several secondary dysfunctions [1]. Furthermore, post-exertional malaise, which is similar to postexertional neuroimmune exhaustion, has been described as a "hallmark" symptom of ME/CFS at least as far back as 2007 [2]. [1] http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.... [2] http://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07 http://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07