Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!, 2021

Joh · Feb 14, 2022

Announcement by the team #SIGNforMECFS.

Prof. Scheibenbogen from the Charité will also take part.

Edited to add translation of the Facebook post:

⏰ Public hearing | German Bundestag
Today, 14 February 2022, the hearing of the #SIGNforMECFS petition 122600 will be broadcast live at 12 noon.
https://www.bundestag.de/mediathek
***
ME/CFS has been neglected for more than 30 years, including by policymakers. This hearing marks an important first step in raising awareness of the nature, severity and complexity of this serious condition.
In these 60 minutes, lead petitioner Daniel Loy, himself affected by ME/CFS, will try to put a face to the disease, which is fraught with stigma and trivialisation. The #SIGNforMECFS team invited Prof. Dr. Carmen Scheibenbogen, acting director of the Institute for Medical Immunology at the Charité Berlin, to support them.
Together we hope for concrete and timely action.
250,000 people in Germany urgently need research, care and lasting political support.
97,210 signatures send a clear signal and give us confidence and hope - a big thank you to all supporters.
We wish our friend and teammate Daniel a lot of strength!
Sonja, Claudia and Kevin
***
https://www.bundestag.de/mediathek
***
#MECFS #Petition122600
Translated with www.DeepL.com/Translator (free version)
Click to expand...

Hoopoe · Feb 14, 2022

The petitioner gave a very good speech, quickly describing the level of impairment and desperation of patients, the unbelievable neglect, psychologization, and economic impact. Also the expectation that cases will rise substantially due to the pandemic.

The petitioner said that his disability benefits assessor burst out into laughter when he heard the diagnosis ME/CFS.

The petitioner was asked what action could be taken that would quickly lead to improvement, and he suggested an education campaign.

Prof. Scheibenbogen was also very good and said that as long as most doctors think this is a trivial or psychosomatic illness nothing will change.

There was more, on research, clinics, etc.

I wasn't able to watch everything but the impression is that everything that needed to be said has been said.

Joh · Feb 18, 2022

The German ME/CFS Association has published an article on the hearing with further links (German):
https://www.mecfs.de/anhoerung-petition/

Automatic English translation of the article:
https://www-mecfs-de.translate.goog..._sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

Transcript of the hearing (German): https://www.mecfs.de/wp-content/uploads/2022/02/Transkript_Anhörung_Petition_SIGNforMECFS.pdf

Five minute opening statement by petitioner (and pwME) Daniel Loy. He participated in the hearing via video call:

https://www.youtube.com/watch?v=tHGnpIgUAts

A video of the one-hour hearing in the Bundestag (automatic English subtitles can be turned on at the small wheel at the bottom right). The video can't be embedded here and has to be watched directly on YouTube:

https://www.youtube.com/watch?v=RdIAqLD0tds

Joh · Feb 18, 2022

Joh said: ↑

Five minute opening statement by petitioner (and pwME) Daniel Loy. He participated in the hearing via video call:
Click to expand...

I found the opening statement, for which there was only 5 minutes, an excellent summary and introduction. So here is an English translation:

"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."

Translated with www.DeepL.com/Translator (free version)
Click to expand...

Trish · Feb 18, 2022

That's a very powerful speech.

Joh · Feb 24, 2022

Before the hearing started, over 230 messages from pwME and their loved ones were handed over to the committee members. This had to be done by the 16-year-old daughter of a petitioner, as the petitioners themselves are too severely affected to be there.

Dolphin · Feb 24, 2022

<deleted>

Log in or Sign up

Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!, 2021

Joh Senior Member (Voting Rights)

Hoopoe Senior Member (Voting Rights)

Joh Senior Member (Voting Rights)

Joh Senior Member (Voting Rights)

Trish Moderator Staff Member

Joh Senior Member (Voting Rights)

Dolphin Senior Member (Voting Rights)

Share This Page

Log in or Sign up

Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!, 2021

Joh Senior Member (Voting Rights)

Hoopoe Senior Member (Voting Rights)

Joh Senior Member (Voting Rights)

Joh Senior Member (Voting Rights)

Trish Moderator Staff Member

Joh Senior Member (Voting Rights)

Dolphin Senior Member (Voting Rights)

Share This Page

Useful Searches