State Failure: Perspective of Karl Lauterbach
In a series of poignant statements, Germany's Federal Minister of Health, Karl Lauterbach, has expressed deep concern for the wellbeing of patients suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid. Lauterbach, who leads the research committee of the Bundestag, has been moved by the plight of patients who express feelings of despair and even contemplate assisted suicide.
Lauterbach has been vocal about the need for substantial investment in therapy research for ME/CFS and Long Covid, suggesting at least one billion euros should be allocated. He believes that much too little is happening in the research for these conditions and has accused the federal government of failing to address the issue adequately.
The stark reminder of the seriousness and urgency of the ME/CFS issue came with an X-post from an affected patient, who reportedly took her life due to the lack of effective treatments. This tragic event has underscored the need for continued and accelerated research into ME/CFS and Long Covid.
In response to the X-post, Lauterbach reassured the ME/CFS community that a cure was near and research was ongoing. However, he acknowledged that he has not achieved more in the field of ME/CFS and Long Covid research to date.
The coalition of Union and SPD is currently debating the amount of funding to be allocated for research into ME/CFS and Long Covid, with discussions revolving around whether to spend 10 or 15 million euros.
Meanwhile, in the United Kingdom, the UK Medical Research Council has funded the PRIME project with £843,662.40 over four years to build research infrastructure for ME/CFS. While this grant is significant for the UK context, it is described as a start—addressing key research gaps but still far below the level advocates argue is necessary for a field historically underfunded and fragmented.
However, the situation in the United States is more dire. U.S. federal funding for ME/CFS research is under severe pressure, with the FY25 Continuing Resolution cutting Congressionally Directed Medical Research Program (CDMRP) funding by 57%, eliminating $859 million overall—including for ME/CFS—and putting innovative studies at risk. The ME/CFS community is requesting $50 million in FY26 to fund a strategic research roadmap, but its implementation depends on Congressional appropriations.
The field urgently calls for sustained, substantial public investment to match the severity and prevalence of these conditions. The international ME/CFS research community continues to highlight the need for such investment, arguing that current funding remains far below what is needed to address the scale of the problem.
References:
[1] MEAction UK (2023). The PRIME Project. Retrieved from https://www.meaction.net/uk/the-prime-project/ [2] MEAction (2023). Advocacy Alert: Urgent Call to Action for CDMRP Funding Restoration. Retrieved from https://meaction.net/2023/02/24/advocacy-alert-urgent-call-to-action-for-cdmrp-funding-restoration/ [3] MEAction (2023). Advocacy Alert: Urgent Call to Action for NIH Roadmap Funding. Retrieved from https://meaction.net/2023/03/01/advocacy-alert-urgent-call-to-action-for-nih-roadmap-funding/ [4] National Institutes of Health (2023). Congressionally Directed Medical Research Programs (CDMRP). Retrieved from https://www.cdmrp.army.mil/funding/cdmrp/index.html
- The European Parliament and the Council need to address the dire state of funding for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid research, as the situation in the United States suggests the need for substantial public investment to match the severity and prevalence of these conditions.
- In Europe, policy-and-legislation makers are urged to increase investments in science and medical-conditions research, particularly for chronic-diseases like ME/CFS and Long Covid, as Germany's Federal Minister of Health, Karl Lauterbach, has advocated for at least one billion euros to be allocated.
- The general-news of a patient taking her life due to the lack of effective treatments for ME/CFS has underscored the need for accelerated research into the condition, as well as highlighting the mental-health implications for patients suffering from these chronic diseases.
- As politics unfolds, the coalition of Union and SPD in Germany is debating the amount of funding to be invested in ME/CFS and Long Covid research, questioning whether to allocate 10 or 15 million euros, which pales in comparison to the billion euros proposed by Lauterbach.
