3 ms·

> - 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 so

> - 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

cpncrunch 10y ago
The OP specifically mentioned "immune" and "metabolic" dysfunction, not symptoms. You are correct that postexertional is likely common to all CFS sufferers, although even that isn't fully agreed on and there is no way of objectively measuring it (repeat CPET might be an objective measure, but that needs more research). Neuroimmune exhaustion has not been objectively defined. The ICC says "rapid" malaise, but it's typically 24 or 48 hours later.
- jsjohns2 10y ago
  > The OP specifically mentioned "immune" and "metabolic" dysfunction, not symptoms. Fair enough. > The symptoms, abnormalities, triggers and cures match perfectly with what you would expect from exhaustion due to chronic stress. Based on your research, what are the cures for "chronic stress"? The treatments discussed in the PACE paper (CBT, GET, etc.)? I'm genuinely interested -- my sister was diagnosed with CFS over a year ago and has made little progress since then.
  - cpncrunch 10y ago
    >Based on your research, what are the cures for "chronic stress"? Well the first thing is to obviously get rid of the chronic negative stress. However even then, many people don't recover (hence the fact that they have long-term CFS, rather than a temporary burnout which they then recover from after removing the stress). As for why people don't always recover after removing the negative stresses? I think there are a couple of possibilities: [1] Negative stress from the illness itself (a vicious circle). [2] The brain gets stuck in the fatigued state, until it gets a "kick" out of it, in the form of a positive stressor. (Basically the fatigue state is a protection mechanism against negative stress that the organism can't cope with, and it requires evidence of a positive development in the future outlook in order to remove the "brakes"). Even though I suffered from CFS, it's hard to pin down exactly which one makes most sense. However the effective cures seem to address both (i.e. getting the patient to do a positive activity). (I should clarify that there are no truly effective "official" cures, only unofficial ones that people like me and others figure out by ourselves). The problem is that CBT and GET aren't based on valid etiologies of the illness, so at best they might be a placebo that just happens to kick the person out of the exhaustion state on some occasions. The problem is that CBT and GET can be inherently stressful (especially if the person is convinced of an organic etiology), which will likely just make things worse.
    - eukaryote 10y ago
      I suffered from ME many years ago, and I was looking for something - anything - to help me cope with the continual fatigue, muscle pain, insomnia, night sweats, tinnitus etc. I went to learn meditation, and the instructor told me that for many chronic illnesses, the stress of being ill can slow down recovery. Once I started practicing meditation, I felt a slow improvement in my condition, and most of the symptoms had sufficiently eased after 10 months that I was living a fairly normal life again. I did experience a couple of mild relapses years later (both times by not easing up on intense exercise when suffering a throat infection), but the symptoms were more mild and I recovered each time after about 4 months. I an not advocating meditation as a cure, but it did make living with ME more bearable.

cpncrunch 10y ago

The OP specifically mentioned "immune" and "metabolic" dysfunction, not symptoms. You are correct that postexertional is likely common to all CFS sufferers, although even that isn't fully agreed on and there is no way of objectively measuring it (repeat CPET might be an objective measure, but that needs more research). Neuroimmune exhaustion has not been objectively defined. The ICC says "rapid" malaise, but it's typically 24 or 48 hours later.

jsjohns2 10y ago
> The OP specifically mentioned "immune" and "metabolic" dysfunction, not symptoms. Fair enough. > The symptoms, abnormalities, triggers and cures match perfectly with what you would expect from exhaustion due to chronic stress. Based on your research, what are the cures for "chronic stress"? The treatments discussed in the PACE paper (CBT, GET, etc.)? I'm genuinely interested -- my sister was diagnosed with CFS over a year ago and has made little progress since then.
- cpncrunch 10y ago
  >Based on your research, what are the cures for "chronic stress"? Well the first thing is to obviously get rid of the chronic negative stress. However even then, many people don't recover (hence the fact that they have long-term CFS, rather than a temporary burnout which they then recover from after removing the stress). As for why people don't always recover after removing the negative stresses? I think there are a couple of possibilities: [1] Negative stress from the illness itself (a vicious circle). [2] The brain gets stuck in the fatigued state, until it gets a "kick" out of it, in the form of a positive stressor. (Basically the fatigue state is a protection mechanism against negative stress that the organism can't cope with, and it requires evidence of a positive development in the future outlook in order to remove the "brakes"). Even though I suffered from CFS, it's hard to pin down exactly which one makes most sense. However the effective cures seem to address both (i.e. getting the patient to do a positive activity). (I should clarify that there are no truly effective "official" cures, only unofficial ones that people like me and others figure out by ourselves). The problem is that CBT and GET aren't based on valid etiologies of the illness, so at best they might be a placebo that just happens to kick the person out of the exhaustion state on some occasions. The problem is that CBT and GET can be inherently stressful (especially if the person is convinced of an organic etiology), which will likely just make things worse.
  - eukaryote 10y ago
    I suffered from ME many years ago, and I was looking for something - anything - to help me cope with the continual fatigue, muscle pain, insomnia, night sweats, tinnitus etc. I went to learn meditation, and the instructor told me that for many chronic illnesses, the stress of being ill can slow down recovery. Once I started practicing meditation, I felt a slow improvement in my condition, and most of the symptoms had sufficiently eased after 10 months that I was living a fairly normal life again. I did experience a couple of mild relapses years later (both times by not easing up on intense exercise when suffering a throat infection), but the symptoms were more mild and I recovered each time after about 4 months. I an not advocating meditation as a cure, but it did make living with ME more bearable.