"Dear Madam Chairperson, Dear Members of Parliament, Dear State Secretary, Ladies and Gentlemen!
First of all, I would like to thank you very much for this opportunity to speak to you today about ME/CFS on behalf of those affected and supported by Prof. Scheibenbogen from the Charité as a proven expert.
For us ME/CFS sufferers, this hearing is a very special event. In the past, medicine and society usually - if at all - only talked about ME/CFS sufferers, but not with us. Today, however, the German Bundestag is listening to us directly.
The significance of this for the many sufferers who are following this hearing right now, some of them from their beds, can hardly be assessed from the outside. But I will try to give you an impression of it:
During the signing period, our small organisation team received a flood of messages from all parts of the country: from the Halligen in the North Sea to the Erzgebirge to the Black Forest on the Swiss border, from Munich and Frankfurt. In them, those affected, their parents, siblings, partners described their despair and distress to us. But also how they are campaigning for our petition. Often under the most difficult circumstances due to their health. Above all, however, we experienced again and again the hope that sprouted in many people because of our petition to the German Bundestag. It is no exaggeration to say that this petition is a cry for help with 97,210 exclamation marks.
My personal ME/CFS story began with my last stay in Berlin: I attended an event of the German National Academic Foundation in spring 2006 and contracted the Epstein-Barr virus. Since then I have been suffering from ME/CFS. Despite numerous visits to the doctor, I was only diagnosed in 2018 after a drastic deterioration in my condition. So a whole twelve years later. Since then, I have lost almost everything that made up my life before.
But after I was diagnosed, I was actually quite optimistic, because I saw it that way:
Of course, you can be unlucky if it takes a while to get the right diagnosis, but if you know what the problem is, then there is a solution. In our country, people seriously try to help all seriously ill people, or so I thought. But what I have learned since then about ME/CFS and how to deal with this disease has made this optimism give way to great horror.
I am a lawyer, and as such I am used to checking statements for their plausibility. And I also have to tell you that if someone had told me about these actual conditions regarding ME/CFS before my own illness, I would not have believed it. I would not have believed that there is a disease that is so serious that at the severe end of the spectrum one is not only permanently bedridden, but also dependent on artificial nutrition, no longer able to communicate, even the slightest sensory stimuli such as light or touch can no longer be tolerated - and the whole thing without end, i.e. possibly for decades. But at the same time, no treatment approaches are available for ME/CFS to this day and, moreover, no care structures are in place. Yes, that many do not even see the urgent need for this to change, because ME/CFS is simply not taken seriously. This means in particular: severely ill people vegetate at home, receive no support and, for example, know no other way to help themselves than to live in their own bathroom, because even the shortest distances overtax their low reserves of strength.
Put yourself in the position of the average ME/CFS sufferer: You suddenly become seriously ill. Perhaps more seriously than you could have imagined before. You turn to doctors for help, tell them about your many distressing symptoms and how they make any normal life impossible. But they just don't see it as a serious illness. It is somehow blamed on your psyche, on your behaviour. You are told you are just unmotivated, even if you have motivation for ten, even if you were having the best time of your life when the symptoms started. You are told that you are deconditioned after a mild infection, even if you are perhaps a professional athlete and know how to assess your body, or you are told something similar, which in any case is absolutely incompatible with your experience of the illness and above all with the scientific findings on ME/CFS. And then, while your body deteriorates due to illness, the illness progresses, you disappear from your own life and of course also fall into existential problems and your relatives despair more and more, month after month, year after year, nothing happens. Nothing happens at all. There is no help. And no perspective.
There would be so much more to say at this point, but I hope it has become clear:
We need a change in this situation, and we need it urgently. This is more true now than ever before. Because due to the Corona pandemic, new cases are currently appearing in large numbers. A subgroup of Long COVID is nothing other than ME/CFS.
Finally, a very brief point: I am aware that as a Member of Parliament you always have to keep the big picture in mind. And that is why I also want to address the financial aspect right away. Every conceivable measure costs money, but I want to emphasise: Even in purely economic terms, the most sensible thing you can do is to invest in education and research. Because the economic damage caused by ME/CFS is already there and is estimated at over seven billion euros annually for Germany. The disease predominantly affects young people who have often just completed their expensive education, but then become unable to work and need care for the rest of their lives because of ME/CFS. If we could bring all these motivated people back into our society - and in total we are talking about a whole big city - there would be so much to gain.
The demands of our petition point the way to this, and I very much hope that they will meet with your approval.
Thank you very much."
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Public hearing | German Bundestag
