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Comment by cpncrunch | Hacker News Reader

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.

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> - 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....

[2] http://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07

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.

> 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.

>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.

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.

The symptoms, abnormalities, triggers and cures match perfectly with what you would expect from exhaustion due to chronic stress.

If you didn't know it was caused by a virus, you could say the same thing about having the flu, most autoimmune diseases, etc. ME/CFS causes many consistent and characteristic symptoms that aren't fatigue, and most other chronic diseases cause fatigue. Why should ME/CFS be psychosomatic any more than any other illness for which we don't know the cause?

>Why should ME/CFS be psychosomatic any more than any other illness for which we don't know the cause?

Because, as I mentioned in my parent comment, the "symptoms, abnormalities, triggers and cures" match stress, but the flu does not. (Flu and other infections typically have the opposite, i.e. increased HPA axis rather than reduced, for example).

Maybe I am misinterpreting your second point, but there are absolutely unique and consistent dysfunctions of ME/CFS sufferers. One example is severe exertion intolerance - this is not present in most other diseases. Generally, if we exercise more than a small amount we are literally bedridden (sometimes hospitalised) for days or weeks. It's often used as one of the diagnostic criteria. Psychological illnesses generally respond very well to exercise, and ME/CFS doesn't. It's a good way to rule out ME/CFS. There are also consistent immunological abnormalities (low NK cells for example), and recently the metabolomics study.

> but there are absolutely unique and consistent dysfunctions of ME/CFS sufferers

But the exercise dysfunction is not consistent. Sometimes it's immediate, sometimes it's 24 or 48 hours later.

>Generally, if we exercise more than a small amount we are literally bedridden (sometimes hospitalised) for days or weeks

That's the problem - it's not always like that for all patients.

>Psychological illnesses generally respond very well to exercise

Not exhaustion from stress. (And it's not entirely psychological, there are various types of stress, some physical). You have to get out of this mindset of physical vs psychological. Stress is both.

>low NK cells for example

That is not consistent, and it is also a feature of stress (which significantly affects NK cells).

>recently the metabolomics study.

which has not been replicated, and which is showing different results to another metabolics study just released (see discussion on healthrising and phoenixrising).

> 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.

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).

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