CFS in short

Chronic fatigue syndrome is a very difficult disease to understand and navigate. With the flu, you just stay under a blanket for two weeks and that’s it. Not the case with CFS though. It seems to be changing form, sometimes improving and other times going right to hell for no reason at all. It can take weeks to months to even assess what effect an external factor (treatment, exercise, diet, …) had. But there is a system under all of that.
It took me over three years to figure it out and now I can share it with you, along with a few recommendations. I only have experience with a rather light form of it, so I am not sure if this would apply to worse cases. But from what I read from others, I don’t see why it would not. In either case, let me know.

Being a geek, I will approach it quite technically – which adds a lot of clarity but maybe also confusion for some people. Imagine it is a computer game (might as well be!) and it should be fine.

Stats to follow

The whole progress of CFS is an interaction of three parameters related to the body – long-term fitness, sickness level, and current fatigue. 

The first two tracks progress, and the third is what runs the game. Their interaction is what it is all about. Don’t mind the missing details now, all will be explained later.

CFS stats

I) The first one is the overall fitness. Of the three, it is the most stable and changes very slowly. It forms the baseline from which the game is played.

II) The second is the sickness level. It goes from feeling normal (which is about as great as Christmas) to being hardly able to move, braindead, in bed. Most of the time it is somewhere in between – feeling shitty, with a mind fog that makes thinking and concentration pretty difficult, and thinking twice about any kind of activity.

III) The third part is a meter (a queue exactly) of muscle fatigue. Mind exhaustion affects it too, but muscles are what it is mainly about. Any kind of physical exertion adds on top of it, and it slowly empties over time. And there is a marker on the meter, which is really important. Keeping the cumulative fatigue under the mark means things are going fine, while going over leads to a quick and painful relapse.

How it ties together

I)  The fitness sets the top point one returns to after being acutely sick and working back up to a “normal” state. A better overall fitness means more space to navigate through – getting more sick does not need to be so limiting and more activity is possible when getting better again.

You can increase your fitness very slowly by careful measured exercising and only when not sick – which, unfortunately, is the smaller portion of time. The rest of the time it will slowly deteriorate. 

II) The sickness level is not as simple as it may seem. As a general rule, it is hard and slow to improve, but can jump from ok to hell in a snap of the fingers.

It has three different stages. There is a sick part, which means simply being more or less sick – feeling shitty, a bee hive in the head, you name it. And trying to do as little as possible in order to get out of it asap – which takes days, weeks, months…

Then there is an intermediate stage – this one is really tricky and a frequent downfall. After a long time of non-activity you finally feel ok, but in fact you are not. You want to start being active again, but the body cannot handle it and plummets right back into the sick state. I still haven’t figured out how to know when this phase is over other than very careful probing and waiting.

Only after succeeding in this patience trial one gets into the good stage where muscles regenerate well enough and exercising and improvement can be achieved.

III) The fatigue meter. Correct fatigue control is the key. It is very tricky because it is cumulative and the body gives false signals about it. Any kind of exertion adds to the fatigue meter and the fatigue level slowly dissipates as the body regenerates – the speed of which depends on the sickness level. So while being sick, leg muscles get tired from a stupid walk around the block and can take a week recover, while in a very good state the recovery can be close to normal.

The fatigue meter has this critical threshold. As long as you are keeping the fatigue below this threshold, you are fine and can work on getting better. But crossing it means a quick relapse right down into the sick stage (on the sickness meter), often undoing months of previous patient progress. 

Not being enough, there are two complications.

One is that there is no way (that I know of) of knowing where that threshold currently is. Sometimes I can trek outdoors for a couple days and be ok, while another time running after a tram is all it takes to cross it. Generally the lower the I) fitness and worse the II) the sickness, the lower is the threshold too. But reality is complicated beyond my, and probably the general, understanding.

The other issue is that the fatigue level itself is very obscure – often you don’t feel it. You can do an exercise, then feel totally fine the next day, and the next day too, then do another exercise on the fourth day – they add up and you are fucked right there.

So how to know when it is finally safe to be active?

They key here is to be as careful and pessimistic as possible. People say “listen to your body”. But in this case the body can’t be relied on at all. Primarily, keep conscious track of any activity, imagine the meter and don’t add any more unless you know that enough time has passed for the fatigue to dissipate. So if you exert yourself and feel great the next day – no. It is a lie. Don’t fall for it.

The whole sentence is “listen to your body for a no”. If anything does not feel right, take the safe option.

Now to not be entirely pessimistic here I have to say that for me there is one very specific feeling in my muscles that seems to really signal that they are genuinely regenerating and I should soon be able to work again. But it is a slow learning process where I have many times misjudged it so I simply can’t recommend anything other than maximal caution.

Hope at the end

Even though I have learned and understood all these things, I was not able to make it work for myself and things have been slowly and steadily going downwards to the point it starting looking hopeless a couple months ago. But then I got recommended to a specific exercise method that apparently has helped many CFS people to get back to a normal life and so far it is doing miracles for me. It is the Wim Hof method. In short, it is a combination of breathing exercises and exposure to cold, along with some yoga, although I don’t think that part is essential. What it does is that as crossing the fatigue threshold throws the body into a sick state, this exercise is able to kick it right back into the good state, and keep it there. It makes sense with the current shaman level understanding of CFS which is that it is a sort of safe mode, “hibernation” of the body tied with poor oxygen utilisation. This breathing/cold combo then kicks the body into a “ready” state to be able to face the harshness of the natural environment. Or maybe it does something entirely different, who knows. It seems that it only works for some people and again, there is no saying whether it is because of different causes behind CFS, differences in people, doing something wrong… But it works for me (so far) so in my opinion, it’s worth a shot.