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by j-g-faustus 3556 days 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-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

1 comments

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.