Germany - parliamentary expert discussion on ME/CFS will take place in the Bundestag 5th March 2020

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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Expert discussion about ME / CFS in the Bundestag!

After half a year of joint work, we can finally announce it:

On 5 March, a parliamentary expert discussion on ME/CFS will take place in the Bundestag: "ME/CFS-supply in Germany – exploiting potential, improving supply". Martina Stamm-Fibich, patient representative of the SPD parliamentary group in the Bundestag and member of the health committee, invites all parties to this.

The Deutsche Gesellschaft für ME / CFS and MillionsMissing Deutschland initiated the expert discussion and supported the planning. In recent months, we have been in constant contact with the Office of Frau Stamm-Fibich, the Charité Berlin and the children's Hospital of the Technical University of Munich.

Ms. Stamm-Fibich will give an introduction at the expert discussion. The three Keynote speakers are Prof. Scheibenbogen from the Charité-Universitätsmedizin Berlin, Prof. Behrends from the TU München/München Klinik and Sebastian Musch, chairman of the German society for ME / CFS. Representatives of #million missing, Germany can take part.

The invitation list includes more than 200 stakeholders relevant to ME / CFS: staff:members of the Federal Ministry of health (including Minister of Health Jens Spahn), the Federal Ministry of education and research and the Federal Ministry of labour and Social Affairs | spokespersons for Health Policy / members of the health, labour and social affairs as well as education and research committees | chairpersons of the parliamentary groups / health advisers of the state governments | representatives of the cash associations, the German pension insurance, the Bundesärztekammer / representatives of social associations | medical experts, ME/CFS researchers, etc., the Chairman of the Lost Voices Foundation and the Fatigatio e. V. are invited, so that all patient organisations are represented.

We would like to thank Ms Stamm-Fibich and all those involved for their commitment the expert discussion in the Bundestag is an important step towards greater recognition, care and research for around 250,000 ME/CFS sufferers, including 40,000 children, and their relatives in Germany.
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It's today!

First article announced the discussion yesterday:

Title: "Expert discussion on ME/CFS in the Bundestag
Millions of people worldwide suffer from Chronic Fatigue Syndrome
Patient representative Martina Stamm-Fibich (SPD) is organizing the first expert discussion together with the German Association for ME/CFS and #MillionsMissing."

https://www.tagesspiegel.de/wissen/...-am-chronischen-fatigue-syndrom/25608820.html
 
Article from yesterday
Millions of people worldwide suffer from chronic fatigue syndrome
ME / CFS finally aware of the relevant actors
Tomorrow, Thursday, Martina Stamm-Fibich, patient representative of the SPD parliamentary group in the Bundestag and member of the health committee of the German Bundestag, invites you to a parliamentary technical discussion.

Under the title “ME / CFS supply in Germany – utilizing potential, improving care ”, the disease should become aware of the relevant players. Employees of the Federal Ministry of Health, including Jens Spahn, are invited as well as health officers from the state governments and representatives of the health insurance associations and the German pension insurance.
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full article here
https://www.bccourier.com/millions-of-people-worldwide-suffer-from-chronic-fatigue-syndrome/
 
http://stamm-fibich.de/4300/verbesserung-der-me-cfs-versorgung-dringend-notwendig/

https://translate.google.com/translate?hl=de&sl=auto&tl=en&u=http://stamm-fibich.de/4300/verbesserung-der-me-cfs-versorgung-dringend-notwendig/

Martina Stamm-Fibich, Member of the German Bundestag : “The lectures by Prof. Scheibenbogen, Prof. Behrends and Mr. Musch have once again made it clear to us that there is an urgent need for action in the area of care for ME / CFS patients. Today's event is a first step to attract more attention. The lively participation of all participants gives me hope that in the future we will no longer have to talk about ME / CFS as the 'forgotten' disease. We now have to get the stone rolling.

In this regard, I very much hope that the project for health services research initiated by Prof. Scheibenbogen will receive the necessary project funding as part of the innovation fund at the Federal Joint Committee (G-BA). In addition, we will try to raise the awareness of the Federal Ministry of Education and Research in the next few weeks in the course of further talks. At this point, I would also like to express my gratitude for the commitment of the doctors and patient organizations involved: Your commitment to the good cause deserves the greatest respect. "
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Summary from the German Association (from the Facebook Post) automatically translated:


"First parliamentary expert discussion on ME/CFS in the Bundestag

On March 5, the first Parliamentary Expert Discussion on ME/CFS took place in the Bundestag: "ME/CFS Care in Germany - Using Potential, Improving Care".

Martina Stamm-Fibich, patient representative of the SPD parliamentary group in the Bundestag and member of the Health Committee, organized the expert discussion together with the German Association for ME/CFS and MillionsMissing Germany in order to improve the disastrous care situation for those affected.

Actors from many important areas participated, including members of the SPD parliamentary group in the Bundestag, Bündnis 90/Die Grünen parliamentary group and CDU/CSU parliamentary group, representatives of the Federal Ministry of Health, the German National Association of Health Insurance Funds (GKV) and the German Pension Insurance Fund, as well as scientists and representatives of the four German patient organizations Deutsche Gesellschaft für ME/CFS, MillionsMissing Deutschland, Lost Voices Stiftung and Fatigatio e.V.

Martina Stamm-Fibich welcomed those present and gave an introduction. Afterwards, Prof. Uta Behrends from the TU Munich/Munich Clinic, Prof. Carmen Scheibenbogen from the Charité - Universitätsmedizin Berlin and Sebastian Musch, Chairman of the German Association for ME/CFS, explained the severity of the disease, the catastrophic care situation and the urgent need for action.

There was large interest, the participants made notes and asked questions. After the short lectures there was an open discussion with lively participation. Over 40 people were present. This number is quite high for a parliamentary expert discussion - in the run-up to the event, it was necessary to switch from the originally reserved room to a larger room due to the number of commitments.

All participants received information folders from the German Association for ME/CFS and from #MillionsMissing Germany, which illustrate the existing problems - backed up with data and facts - and show the most important fields of action. The Kudoboard with messages from 150 affected people, which #MillionsMissing Germany recently handed over to Maria Klein-Schmeink, was also laid out in the room.

It is an important step that all major parties recognise the problem and that health insurance companies and pension funds are also involved. This is now being built on - with more and more advocates within politics. One of our next goals is to set up a commission with experts and equal participation of patients as soon as possible.

Mrs. Stamm-Fibich, #MillionsMissing Germany and the German Association for ME/CFS have sent out a joint press release, which you can find here: https://www.mecfs.de/wp-content/uploads/2020/03/2020-03-06-PM-Fachgespräch-ME_CFS-final.pdf

A film team was also present at the expert discussion. We will post media contributions about the expert discussion on our channels after they appear.

On the group photo you can see (from left to right)
xxx"

(Edited: Cleaned up the automatic translation a little)
 
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