Introduction
A serious illness, no causal therapies
With the next two blog articles, I would like to draw attention to the condition ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome). In this first article, I will report on my experiences with patients, and in the second article I will explain what ME/CFS is, which causes are known, and what treatment options exist.
What is ME/CFS and how many people are affected?
ME/CFS is a severe neuroimmunological multisystem disease. The German Society for ME/CFS states that about 250,000 people in Germany are affected, including around 40,000 children. Worldwide, the number is estimated at 17 million.
My own experience with my patients
I have been caring for patients with these clinical pictures for many years. Through this, I have learned a great deal. At the beginning, I could not have imagined what terrible — even life-threatening — illnesses these are. In addition, due to insufficient and missed research, there are unfortunately still hardly any effective therapeutic options available.
Stigmatization of people with ME/CFS
What is particularly distressing is that people with ME/CFS are often stigmatized by those around them — including by physicians. Statements such as: “Don’t be so dramatic,” “You just need to try a bit harder,” “This is psychiatric/psychosomatic,” or “It’s just temporary burnout” are all completely wrong in the context of ME/CFS.
This makes the suffering of those affected immeasurable. People with ME/CFS have no greater wish than to participate in life again. But they cannot — because, depending on severity, even the smallest exertion, such as brushing their teeth, can lead to a massive worsening of symptoms.
People of all ages affected — varying severity up to death
I know patients of all age groups — people who have had to live with this illness for 40 years, patients in wheelchairs, and others who deteriorate so quickly that they can no longer leave their bed or home, and for whom speaking just two words can trigger a collapse or crash. I am repeatedly shaken by this. Sadly, there are also patients who die from or with this disease.
Research, education, and treatment approaches urgently needed
ME/CFS can affect any of us — especially in the era of the COVID pandemic. Not a few people who develop Long COVID go on to develop ME/CFS. So far, there are no causal therapies — meaning treatments that address the underlying causes of the disease. One reason is the lack of research and the still insufficient understanding of its mechanisms. I also repeatedly hear from my patients that many physicians are unfamiliar with ME/CFS.
Second part of the ME/CFS series
In the second blog article on ME/CFS, I will explain what ME/CFS is, which possible causes are known, and which (supportive) treatment options exist.
Important note:
The content of this blog/newsletter is provided for general informational purposes only and does not replace personal medical advice, diagnosis, or treatment. The information presented here should therefore not be used as the sole basis for making health-related decisions. If you experience any medical complaints, you should in any case seek professional medical advice.
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About Dr. Katja Aschenbrenner, MD
I am Dr. Katja Aschenbrenner. When no one else can find the root cause, my work begins. I support people with persistent exhaustion, unclear symptoms, or chronic illnesses using an integrative and functional medicine approach.
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