Why are they testing another anti-cd20 mab (ublituximab) when rituximab didn’t work? @Jonathan Edwards does this make any sense?
Germany's "National Decade Against Post-Infectious Diseases"
- Thread starter DHagen
- Start date
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- germany research funding
Also this post indicates the anti-CD 19 trial wasn’t approved, I think.
Post in thread 'News from Germany'
https://www.s4me.info/threads/news-from-germany.11006/post-654322
Post in thread 'News from Germany'
https://www.s4me.info/threads/news-from-germany.11006/post-654322
Chandelier
Senior Member (Voting Rights)
A 1000 word article by Martin Rücker on the decision of the german government to invest 500 million euros in the next decade to research post-infectious diseases:
www.riffreporter.de
Bund startet 500-Millionen-Programm für Long-Covid-Forschung
Historischer Durchbruch: Die Bundesregierung investiert eine halbe Milliarde Euro in die Forschung zu postinfektiösen Erkrankungen wie ME/CFS & Long Covid
www.riffreporter.de
Research Decade Against Post-Infectious Diseases: The 500-Million Boost
A Historic Government Initiative
Germany’s federal coalition is launching a “National Decade Against Post-Infectious Diseases,” the world’s largest state-funded program for researching Long Covid, ME/CFS, and related conditions. While the United States retreats from earlier initiatives, Germany plans to invest 500 million euros over ten years. The funding is framed as an investment in the future of hundreds of thousands of affected adults and children, as well as in the country’s scientific landscape.
The Scale of the Research Gap
Although the sum appears large, 50 million euros per year is modest for clinical studies that might lead to approved treatments, especially given gaps left by the pharmaceutical industry. ME/CFS has been known for more than 50 years with minimal research, and many pathogens besides SARS-CoV-2 can trigger long-term illness. Some patients recover, but others become chronically ill or even bedridden, making increased research urgent.
Political Delays and Activism
The initiative also highlights failures in research policy. Although former health minister Karl Lauterbach recognized the scientific need, he publicly called it “state failure” only after leaving office. The eventual breakthrough resulted from determined activism: protests, letters, and persistent dialogue by severely ill people and their families. Their efforts underline how difficult it is for patients to receive support, especially with ongoing poor healthcare provision.
Internal Conflicts and Media Missteps
Some activists overshot their goals, at times attacking supportive politicians or researchers. Their frustration grew as certain scientists continued to frame Long Covid and ME/CFS as psychological despite contrary evidence. Media coverage often amplified conflict and sometimes misrepresented budget negotiations, risking public support and potentially endangering the research decade.
Ensuring Effective Use of Funds
The challenge now is to allocate the money wisely. Past examples, such as state-funded Kneipp-therapy studies in Bavaria, show how funds can be misdirected. The decade’s success depends on supporting researchers with real clinical experience in post-infectious conditions. If done well, Germany could face the future far less uncertain than today.
A Historic Government Initiative
Germany’s federal coalition is launching a “National Decade Against Post-Infectious Diseases,” the world’s largest state-funded program for researching Long Covid, ME/CFS, and related conditions. While the United States retreats from earlier initiatives, Germany plans to invest 500 million euros over ten years. The funding is framed as an investment in the future of hundreds of thousands of affected adults and children, as well as in the country’s scientific landscape.
The Scale of the Research Gap
Although the sum appears large, 50 million euros per year is modest for clinical studies that might lead to approved treatments, especially given gaps left by the pharmaceutical industry. ME/CFS has been known for more than 50 years with minimal research, and many pathogens besides SARS-CoV-2 can trigger long-term illness. Some patients recover, but others become chronically ill or even bedridden, making increased research urgent.
Political Delays and Activism
The initiative also highlights failures in research policy. Although former health minister Karl Lauterbach recognized the scientific need, he publicly called it “state failure” only after leaving office. The eventual breakthrough resulted from determined activism: protests, letters, and persistent dialogue by severely ill people and their families. Their efforts underline how difficult it is for patients to receive support, especially with ongoing poor healthcare provision.
Internal Conflicts and Media Missteps
Some activists overshot their goals, at times attacking supportive politicians or researchers. Their frustration grew as certain scientists continued to frame Long Covid and ME/CFS as psychological despite contrary evidence. Media coverage often amplified conflict and sometimes misrepresented budget negotiations, risking public support and potentially endangering the research decade.
Ensuring Effective Use of Funds
The challenge now is to allocate the money wisely. Past examples, such as state-funded Kneipp-therapy studies in Bavaria, show how funds can be misdirected. The decade’s success depends on supporting researchers with real clinical experience in post-infectious conditions. If done well, Germany could face the future far less uncertain than today.
Malvaceae
Established Member
Is there a risk of BPS ideology shaping this new project? I’m not aware of how the situation with BPS is in Germany.
Chandelier
Senior Member (Voting Rights)
Yes, germany’s neurology association is spouting unfounded BPS stuff:
After yesterday's positive news, here's why many pwME aren't overly optimistic because the money could be used to fund more BPS nonsense.
All three recommend GET or even inpatient rehab facilities for pwME.
www.aerzteblatt.de
AI summary:
All three recommend GET or even inpatient rehab facilities for pwME.
Rehabilitation: Ist eine Reha bei ME/CFS sinnvoll? – Deutsches Ärzteblatt
www.aerzteblatt.de
AI summary:
rvallee
Senior Member (Voting Rights)
They are for sure going to grab and waste a big part of this budget. The only viable goal is to keep this as low as possible, and given the history, even 50% actually spent on useful research would be a big win. Zero chance it can be fully utilized, unfortunately. Germany has a very strong psychosomatic tradition.
As long as we avoid a disaster like in the Netherlands, where all the funding was captured by quacks even though it was explicitly meant to go to anything but them. This is just how medicine does its thing, I guess. It's not slow and expensive just because it's a difficult and expensive industry.