What is ME/CFS or Chronic fatigue syndrome?

In a very short summary, the body is ready to release old stressors. Events of almost any type can trigger these old stressors. When stress comes up, the brain perceives it as a danger and creates primary symptoms.

This leads to persistent stress, so overwhelming that it traps the entire body in a vicious cycle. After a while, it gets harder and harder to get out of the ‘fight or flight mode’. The accumulated extra stress is stored in the body and creates all kinds of secondary symptoms, leading to complete exhaustion. Eventually, a person with chronic fatigue experiences burnout due to this state of being, and depression is also likely to be experienced on top of all the complaints.

Usually people switch temporarily from being in survival mode to calming down themselves, and their bodies are ready to release stressors. From this perspective, we need to help the body release stress and not accumulate more stress, as there seems to be zero stress ability.

Most people I talk with have doubts about whether they have ME/CFS or not. The symptoms can vary from person to person, and the clinical picture of the symptoms seems very capricious at times. This means that there are so many ups and downs in the condition and so many variations that it is hard to keep track of things and create a recovery routine. In the end, whatever we call it is just a label to describe multiple symptoms and will, in the end, create negative expectations.

What are the symptoms?

A person suffering from chronic fatigue syndrome suffers from most or a few of the following (medically unexplained) symptoms over a period longer than 6 months:

  • Fatigue or pain
  • Headaches (tension headaches)
  • Joint pain
  • Brain fog
  • Light and sound sensitivity
  • Unrefreshing sleep.
  • Groggy feelings
  • Extreme exhaustion lasting more than 24 hours after physical or mental exercise.
  • Flu-like aches or feverishness
  • Dizziness
  • Gut problems
  • Nausea
  • Depersonalisation
  • POTS

This results in a vicious cycle where the quality of sleep is decreasing fast, the person can’t be involved in everyday activities, muscles are becoming weaker, and keeping a healthy rhythm becomes harder and harder.

The clinical picture of ME/CFS

The condition has so many ups and downs that it is hard to keep track of what is going on, let alone create a recovery rhythm in your daily life. You will be full of doubt, and any setback can cause massive doubts in yourself, your idea about the condition, and the approach you believe to be the right one.

Lost on the internet.

Instead of switching your focus on possible other causes, like EBV and Lyme, it is key to see the commonality of the symptoms and stop searching on the web for plausible causes. To do this, you must come to terms with the fact that no one else can cure you with a magic pill. Which is a hard pill to swallow at first. If you look at it from a different perspective, you might see that the symptoms are mindbody symptoms, and because there are so many ups and downs, it is not a permanent disease that you have to live the rest of your life with.

Push and crash cycles

For many, the illness runs through the push-and-crash cycle. The more your nervous system is overstimulated, the worse the crashes can get. Although some people may perceive fatigue as just being tired, this is far from the case. A man who recovered from ME/CFS but died from aids a few years later described the sensation of a crash as far worse than his final days of battling aids. The sensation of severe fatigue from exhaustion is simply unimaginable for anyone who has never experienced it. I made a blog post about different types of fatigue that people can differentiate between.

Rest and heart rate

Normally, if you are tired, you are in need of some rest and should wait to calm down. This, however, doesn’t do the trick anymore. Focusing on the symptoms might even increase the chronically elevated heart rate. In a crash, you can have a heart rate of around 100 while doing nothing, which is very common. Although you try to rest with a heart rate like this, you are not resting at all. There are lots of things you can do to try to lower your heart rate; you will get better at it over time. A chronically stressed heart rate indicates that the nervous system remains in survival mode.

If rest doesn’t help and you can’t be active anymore, you sort of end up in a living hell. All people do is wait for the days to pass and make it through the days. Having the hope that your sleep will somewhat give you more energy (or less symptoms) the next day, which will only sometimes be the case.

You will be bored beyond your imagination, but you will feel so bad that you don’t care about being bored. This is somehow a tricky situation.

Depression, burnout, or graded exercise?

A psychologist will probably want you to start gradual exercise therapy and suspect depression. Although the condition is very depressive, depression would be the wrong diagnosis. The symptoms are also similar to a burnout. You can’t expect a burn-out treatment to work because you might call the burn-out symptoms secondary.

The negative spiral and the stress that come from dealing with a life full of symptoms and searching for answers complete the picture of a very debilitating yet invisible condition that can last for years and even decades.

Not all bad

It’s not all bad, however. People can recover from this syndrome of symptoms, and they often report being very grateful for all they have learned. You will never get your old life back; instead, something better is waiting for you. Your internal world will never be the same again. You are studying the most difficult subject in the world, yourself.