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

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

full article here
https://www.bccourier.com/millions-of-people-worldwide-suffer-from-chronic-fatigue-syndrome/

 

How did the expert discussion in parliament go? Was anyone able to attend?

 

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/

 

These are the Facebook posts from the three organizers: MP Martina Stamm-Fibich, German Association for ME/CFS and #MillionsMissing Germany.
(Facebook offers a "translate" option, if you click on a post.)








Link to a joint press release: https://www.mecfs.de/wp-content/uploads/2020/03/2020-03-06-PM-Fachgespräch-ME_CFS-final.pdf

 

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)

 

Short TV report on the parliamentary expert discussion from a big public broadcaster: https://www.daserste.de/information...g-11-3-2020-ard-mittagsmagazin-video-100.html

Starts at minute 37:45.

 

How was it?