Roundtable of ME/CFS patient organizations with the Ministries of Health and Research
On December 10, the patient organizations Deutsche Gesellschaft für ME/CFS, Fatigatio e.V., Lost Voices Stiftung and MillionsMissing Deutschland met for the first time with representatives of the Federal Ministry of Health, the Federal Ministry of Education and Research and the Federal Patient Commissioner.
The reason for the meeting was the open letter that the patient organizations jointly addressed to the ministries after the EU resolution on ME/CFS (
https://www.mecfs.de/alle-vier-me-cfs-patientenorganisation...) and the multiple requests to members of parliament for improved medical and socio-legal care for ME/CFS patients.
The ministries agreed that ME/CFS is an important disease and that action is needed. Likewise, that through the EU resolution and the many activities of those affected and organizations, awareness of ME/CFS in politics has increased significantly. There was a common agreement that a significant improvement in the care situation must be achieved as soon as possible.
As a first step, the BMG is commissioning the Institute for Quality and Efficiency in Health Care (IQWiG) to write a comprehensive review of the current state of knowledge about ME/CFS. ME/CFS experts and patient organizations are to be explicitly involved in the process. Following the survey, an educational campaign for physicians is planned.
In accordance with the EU resolution, the BMBF has initially extended the "Guideline for the funding of interdisciplinary networks for research into pathomechanisms" to include Module 2, which is intended to enable an interdisciplinary network of German ME/CFS researchers to apply for funding on a larger scale. Again, patient organizations will participate in the process in an advisory capacity.
Next year, a follow-up meeting will be held in the same round to discuss the measures implemented and progress made up to that point. We will, of course, keep you informed of developments.
We are confident that policymakers are finally recognizing the need for action, implementing initial measures and are prepared to engage in further discussions. These are important first steps that can be built upon further at the federal and state levels.
In addition to this milestone, we continue to advocate for better care for all ME/CFS sufferers in a timely manner.
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