Jan 3, 20204 min read

What is ME/CFS?

Updated: Jan 16, 2022

CFS, otherwise known as Chronic Fatigue Syndrome or Myalgic Enzephalomyelitis (ME) is a neurological disease that is still very unknown. It is listed in the ICD under the code G93.3. Most people I meet have never heard about it before, until I tell them about it.

As of now, there is no cure for this illness.

CFS is a complex disorder that affects the whole body. It is characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may get worse with physical or mental activity, but doesn't get better with rest or sleep. It is not comparable with "normal" tiredness or exhaustion that comes after physical activity.

The illness can come with many symptoms, such as cognitive dysfunction, all kinds of pain, sleep disorders of all kind, a constant sore throat and swollen lymph nodes, an overall feeling of malaise and many more. Of course every body is different so symptoms can vary in every patient.

The main symptom of the disease, and the one that distinguishes it from other fatigue-related illnesses, is called PEM. It stands for Post Exertional Malaise and describes a worsening of symptoms after overexertion. That means, if you go beyond your individual threshold, your symptoms will worsen. This is why the key to "treat" the illness (there aren't any approved treatments for the illness yet) is "pacing": it is a strategy where you learn to stay below your threshold, to avoid PEM, or "crashes" as they are often called by patients.

ME/CFS can be very hard to diagnose because many doctors still don't even know about it or what to look for- or don't take it seriously enough.It can take years from the outbreak of the illness to getting the proper diagnose. Since so little is known about it, you need a good portion of luck to find a doctor who recognizes the symptoms and diagnoses you correctly. Even though ME/CFS is not a psychological disease, many doctors treat it as such- wich often leads to patients getting worse and worse, since they are often encouraged to go over their energy limits (many psychological illnesses are treated with activation and an increase of movement) - wich due to PEM can lead to a worsening of symptoms instead of an improvement.

So how does it feel to have CFS?

Many people describe it like having a constant flu that never really goes away.

It is as if your battery is broken. Imagine having an old phone, with a broken battery that doesn't properly charge anymore. You constantly have to charge it and as soon as you remove the cable, the battery dies quicker than you can look.

Now imagine this broken battery is my body. Instead of charging to 100% when I sleep, it might charge to 20%. And these 20% last me for a very little while, until I am exhausted again, forced to rest and preserve the little energy i have. Imagine having to live your whole life on 20% energy. Suddenly you realize that every little activity costs energy. Getting up from bed. Showering, brushing your teeth, grocery shopping, cooking food, cleaning the house, spending time with friends... I usually can't do all of those things on one day because that would cost more energy that I have. You learn that your energy is the most valuable currency that you have and that you need to plan with it properly. Otherwise you might run out and be unable to do anything for a couple of days.

In my heart I am full of motivation to do many things in my life. But I have to set priorities because I simply cannot do all the things I would like to do.

It can be frustrating to constantly have to say no to things you would love to do, because you don't have anymore energy left or you are experiencing too many symptoms and you need to rest. It feels like I am an active person with an active mind, trapped in a body that is constantly exhausted, hurting and in need of rest.

Finding a balance between resting and activity is difficult. A certain level of activity is important so you stay sane and happy- and to keep your body relatively active. But too much and you pay the price for days after. Every day of my life I have to find that balance and it can be tough. I don't always succeed in finding that right balance and sometimes I end up paying the price. The longer you get to know your body and the better you learn to understand yourself, the easier it gets. But of course, failures are part of the journey- and that's ok too. If you suffer from chronic illness you better distance yourself from any perfectionism. Every little step in the right direction counts.

I hope that one day the journey to getting the right diagnosis will be easier. I hope that more and more people will learn about the existence of this illness. My dream is that one day there is proper treatment, or even a cure, so my active mind can live in an active body again.

Where can I get more information?

For more information, you can visit this summary by the CDC or this overview by the OMF.

What can i do to help?

There are organizations that fight for better care for #mecfs patients around the world. In supporting them, you can support us.

Here are some links to international and local organizations:

International:

Open Medicine Foundation: https://www.omf.ngo

ME Action Network: https://www.meaction.net

Austria:

CFS-Hilfe: https://cfs-hilfe.at

Germany:

Fatigatio e.V.: https://www.fatigatio.de