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