Myalgic encephalomyelitis or chronic-fatigue-syndrome (short ME/CFS) is much more than just being tired. It is a complex neurological disorder that is put into the same category as multiple sclerosis, Parkinson’s and ALS by the WHO. People affected by ME/CFS experience a profound fatigue alongside disturbances in the endocrine, cardiovascular, musculoskeletal, and digestive systems.

Prejudice, stigma and stereotyping

Although there are 17 million[1] people worldwide affected, people, in general, have no idea about ME/CFS and would rather be able to explain MS, although it affects fewer people (good!). Due to having „fatigue“ in its name, it happens that it is quickly assumed, that ME/CFS is „being tired“. Which is not wrong, but also just a small part of the whole package.

Yes, I am tired. And I am also in pain, dizzy, nauseous and quickly overwhelmed by external stimuli. It happens that tiredness itself is causing the least discomfort.

Your “tired” is not my “tired”….

A better description than „tired“ it is being profoundly fatigued. Imagine feeling like you have to lie down but…you are already lying down and it’s not helping. The symptom palette that comes with ME/CFS is long, diverse and fluctuating. It is a multi-system condition, meaning it can affect every part of your body.

The misconception that ME/CFS is „just being tired“ hurts because it often is followed by statements such as „I am tired as well“ and while I feel that it is genuinely alarming, how many people seem to think that constant tiredness is a normal thing of adult life, I get frustrated with people hinting that I’m not sick but just a bit….whiny. I know that most people mean well but comparing normal tiredness with my condition is just…meh.

Don’t be like that.

Diverse symptoms and evershifting energylevels

To paint a better picture of how it is living with ME/CFS: It is like your body is a chaotic constructions site an if you manage to stabilize one wall, another is collapsing – or as Jennifer Brea has put it in her TEDtalk: „It is a custom-made prison“[2]. Even mildly affected folx like me experience a long list of diverse symptoms and shifting energy levels that makes it hard to plan anything.

It often feels to me like I need to lie down but…..I am already lying down.

A chaotic multi-system condition

As a multi-system condition, ME/CFS affects almost every part of my body and therefor every part of my life. ME/CFS comes with gastrointestinal issues such as food intolerances, disordered sleeping and an inability to tolerate exercise.

I’d guess that this doesn’t fit the normal understanding of „tiredness“ anymore, no?

Affects 17 million people worldwide

Let me emphasize again, that approximately 17 million people are affected worldwide (which is a lot more than people being affected with MS for example!) and ME/CFS is recognized by the WHO already since 1969 (!), thanks to the efforts of Dr. Melvin Ramsay from the Royal Free Infectious Diseases department.[3]Still there is a lack of funding for research and sadly also a lack of knowledge within the medical field.

If it happens you know someone with ME/CFS and want to support them, you can already help them a lot by recognizing: It’s not just being tired.

Thank you.

[1]https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome

[2]Brea, Jennifer: What happens, when you have a disease doctors can’t diagnose, published June 2016 [online access September 27, 2020. https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose].

[3]Open Medicine Foundation: History of ME/CFS, published March 27, 2019 [online access September 27, 2020, https://www.omf.ngo/history-mecfs/].