{"id":17302,"date":"2026-06-13T12:17:27","date_gmt":"2026-06-13T12:17:27","guid":{"rendered":"https:\/\/mecfs-research.org\/?p=17302"},"modified":"2026-06-13T12:17:29","modified_gmt":"2026-06-13T12:17:29","slug":"news-ndpe-update-jun26","status":"publish","type":"post","link":"https:\/\/mecfs-research.org\/en\/news-ndpe-update-jun26\/","title":{"rendered":"National Decade againt Post-infectious Diseases: Status update and next steps"},"content":{"rendered":"

The implementation of the \"National Decade against Post-Infectious Diseases,\" announced by the Federal Government in Germany last November, has begun. We report on the current status and the information available regarding the next steps of the research programme.<\/strong><\/strong><\/strong><\/p>\n\n\n\n

First measures of the \u201cNational Decade\u201d<\/h3>\n\n\n\n

With the \"National Decade Against Post-infectious Diseases<\/a><\/span>\" (external link), the German Federal Government with its Federal Ministry for Research, Technology and Space (BMFTR) has launched one of the most ambitious research programmes to date addressing post-acute infection syndromes (PAIS). Backed by a total of 500 million euros, the initiative aims to invest 50 million euros annually over the ten-year period from 2026 to 2036 into research on post-infectious diseases\u2014most notably ME\/CFS and Long COVID (or post-COVID syndrome). The goal is to gain a better understanding of these conditions and to develop targeted treatments.

In preparation for the launch of the \"National Decade,\" an\u00a0expert discussion within the Research Committee of the German Bundestag<\/a><\/span>\u00a0(external link) was held in December 2025. Alongside various experts, ME\/CFS Research Foundation participated in the discussion and outlined specific demands regarding the design of the \"National Decade.\" These include a clear focus on funding biomedical research, incorporating existing expertise from ME\/CFS research in Germany, ensuring the comprehensive involvement of patient experts, and orienting all research activities toward the rapid development of effective and safe treatment options (see our\u00a0statement from 17 December 2025<\/span><\/a>).<\/p>\n\n\n\n

The past few months saw the implementation of the \"National Decade\", with initial frameworks and structures being established. One of the first measures was the\u00a0creation of a steering committee<\/a><\/span>\u00a0(external link) involving not only experts from the university and non-university research sectors but also patient representatives (including the German Association for ME\/CFS). Furthermore, three working groups have been convened to date: one focusing on translation (covering treatment development, among others), one on biosamples and data (research structures), and one on care-related research. An overview of the activities, plans, and objectives is provided in the presentation given by\u00a0Prof. Dr. Natascha Sommer on the National Decade and the post-COVID research landscape<\/span><\/a>\u00a0at the ME\/CFS Symposium 2026.\u00a0<\/p>\n\n\n\n

On 1 June 2026, BMFTR released a call for proposals for the first funding measure of the \u201cNational Decade\u201d. Researchers in Germany can apply until 2 September 2026 for project funding for clinical trials focused on the diagnosis and treatment of post-acute infection syndromes (PAIS). We\u00a0cover the announcement of the BMFTR funding guidelines in a separate article<\/a><\/span>.<\/p>\n\n\n\n

Details on the next steps<\/h3>\n\n\n\n

BMFTR is responsible for the coordination of the \u201cNational Decade.\u201d In her welcoming address at the ME\/CFS Symposium 2026 on 8 May, Federal Minister for Research, Technology and Space Dorothee B\u00e4r<\/span><\/a> addressed those affected and announced the aforementioned initial call for proposals, as well as a format for dialogue with patient organisations. On 9 June, a virtual exchange took place between the Ministry and 16 patient organisations and initiatives representing those affected by Post-COVID Syndrome, ME\/CFS, and Post-Vac. The organisations\u2019 demands were gathered, and questions regarding the approach and structure of the \u201cNational Decade\u201d answered.<\/p>\n\n\n\n

ME\/CFS Research Foundation also participated in this meeting. During the discussion, we reiterated our demands raised at the\u00a0expert meeting of the Research Committee<\/a>\u00a0and put forward specific proposals and offered our support for networking among researchers and keeping patients informed.<\/p>\n\n\n\n

Key messages by BMFTR from the meeting on 9 June 2026:<\/strong><\/p>\n\n\n\n

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  1. Research priorities:<\/strong> Initially, the focus will be on the conditions ME\/CFS and Long COVID (or post-COVID syndrome). This is where the need for research is most urgent. Over the course of the ten-year initiative, other post-acute infection syndromes (PAIS) may also be addressed.<\/li>\n\n\n\n
  2. Disease definition<\/strong>: BMFTR bases its approach on the current state of scientific knowledge regarding the definitions of ME\/CFS and post-COVID syndrome as complex, somatic multisystem diseases. Currently, no specific focus or funding measures are planned for psychosomatic research. <\/li>\n\n\n\n
  3. Funding guidelines<\/strong>: The first funding guideline was published on 2 June. More guidelines covering other areas of focus (e.g. funding for additional phases of clinical trials) are currently being prepared and are scheduled for release in 2026. Private companies are expected to be eligible to apply in the future. <\/li>\n\n\n\n
  4. Cohort formation<\/strong>: The selection of cohorts and patient subgroups (based on current evidence and disease definitions) is intended to be a central component of the BMFTR\u2019s calls for proposals and review processes. <\/li>\n\n\n\n
  5. Post-Vac<\/strong>: The \"National Decade\" aims to generate meaningful and actionable insights in the fields of diagnostics (e.g. biomarkers) and treatments. These research findings are intended to benefit those affected by Post-Vac conditions as well. Although Post-Vac is not explicitly named, it is recognised and taken into account within post-COVID syndrome research. <\/li>\n\n\n\n
  6. Severely ill patients<\/strong>: BMFTR is mindful of this group of affected individuals and will aim to facilitate their inclusion in projects wherever possible (e.g. through outreach or telemedicine approaches). This issue presents a major medical challenge, as well as a logistical one for conducting studies. <\/li>\n\n\n\n
  7. Children and adolescents<\/strong>: The \"National Decade\" is also focusing on this particularly vulnerable group. Pediatric expertise is represented in every working group. Incorporating this into clinical trials is complex; work is underway on an approach designed to include children and adolescents. <\/li>\n\n\n\n
  8. Patient representation<\/strong>: Involving affected individuals is considered essential\u2014both as sources of knowledge and for the recruitment of study participants. Patient organisations participate on an equal footing, with voting rights, in the steering committee and the working groups. This practice is also intended to apply to the review of funding applications. <\/li>\n\n\n\n
  9. Improving care:<\/strong> Issues related to healthcare provision\u2014such as physician training, off-label treatments, and assistance\u2014lie with the responsibility of the Federal Ministry of Health (BMG) and are not a primary focus of the \"National Decade.\" BMG is involved in the \"National Decade,\" and a separate working group focuses on care-related research. <\/li>\n\n\n\n
  10. More information<\/strong>: A dedicated website for the \"National Decade\" is currently being planned. Additional formats for exchange with patient organisations are also in the preparation.<\/li>\n<\/ol>\n\n\n\n

    ME\/CFS Research Foundation maintains close contact with other patient organisations to make meaningful and constructive contributions to the successful implementation of the \"National Decade.\" Together with the German Association for ME\/CFS (Deutsche Gesellschaft f\u00fcr ME\/CFS), Fatigatio e.V., and Long COVID Germany, we actively advocate for research that is consistently patient-centered. To this end, the four organisations formed a \"Patient Representation Working Group for the National Decade\" in early 2026. This working group pools the organisations' scientific and medical expertise and coordinates regularly on emerging issues in order to provide concrete input to the BMFTR and the stakeholders involved in the \"National Decade.\"

    We will continue to report on further developments relating to the \"National Decade Against Post-Infectious Diseases\" and biomedical research in these areas in general.\u00a0<\/p>\n\n\n\n

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    How can you support the work of the ME\/CFS Research Foundation?<\/h3>\n\n\n\n

    While progress has been made, there is still a long way to go before diagnosis, care and treatment of ME\/CFS patients will one day become an established medical and social standard. We at the ME\/CFS Research Foundation are focussing on biomedical research, which we see as a key element in solving these problems (more on this in our research funding strategy<\/a><\/span> and in the recent half year report<\/a><\/span>, which summarises our activities). To achieve this, we rely on broad support from private donors \u2013 those affected, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. If you are not able to provide direct support, you can share our stories and motivate others to help. Because only together can we achieve. this goal.<\/p>\n\n\n\n

    We fully translate donations and other support into scientifically excellent research, networking and ultimately visible successes, i.e. improved ME\/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!<\/p>\n\n\n\n

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