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Comment by j374 | Hacker News Reader

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.

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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.

> 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).

> - 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).

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?

"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..

How much were you sleeping?

5 hours.

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.

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.

>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?

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.

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.

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-nav...

[2] 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.h... - gut bacteria

The immune hyperactivity theory is interesting. It's kind of like the opposite of AIDS. (unless there really is an undetected threat)

Someone I know who has ME describes it as feeling like they have the flu all the time.

It can feel like "flu with a hangover", that's my experience too.

In my case that's triggered by too much activity. I've gradually learned to stay within my limits most of the time, so these days I don't have the flu feeling as often as I used to. Although I have to limit activity to a handful of hours per week in order to keep it at bay.

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

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...

2. http://www.pnas.org/content/113/37/E5472.full.pdf

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.

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 :)

I switched over to another browser and it's working fine, thanks for the links. I agree that it was definitely worth the read.

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.

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