International Declaration in Support of Research and Drug Development for ME/CFS and Long COVID

[Yann04]

Not sure if this has been shared before. Couldn’t find anythjng.

But article on 60 researchers and clinicians signing an open letter calling for better ME/CFS, Post COVID research

Long Covid und ME/CFS: Spitzenforscher fordern internationale Forschungskooperationen

Long Covid und ME/CFS müssen dringend besser erforscht werden, fordern internationale Wissenschaftler und Ärzte. Mehr als 60 von ihnen haben nun eine gemeinsame Erklärung abgegeben.

www.faz.net

Here’s an article about it in english:

ME/CFS Research Foundation

ME/CFS Research Foundation is a non-profit organization dedicated to advancing research and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.

declaration.mecfs-research.org

 

[Yann04]

Brian Hughes signs it

 

[SNT Gatchaman]

Merged
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It looks like this was instigated at the May Charité conference, but has been announced on social media today. Possibly we've noted this previously.

https://declaration.mecfs-research.org/en/declaration

Recognizing:​

1. That millions of individuals worldwide are suffering from post-viral syndromes characterized by debilitating fatigue, post-exertional malaise, autonomic dysfunction, cognitive impairment, and a host of multisystemic symptoms;
2. That the COVID-19 pandemic has led to an unprecedented increase in the incidence of post-acute infection syndromes (PAIS), and that many of these patients meet established diagnostic criteria for ME/CFS;
3. That ME/CFS has, for decades, been severely underfunded, under-researched, and misunderstood, despite its high burden of disease and significant economic and social costs;
4. That current medical education and public health infrastructure are inadequately prepared to recognize, diagnose, and treat these complex, chronic illnesses; and
5. That drug development for ME/CFS and Long COVID is currently virtually non-existent in the mainstream pharmaceutical pipeline.

We therefore declare the following:​

1. Global Challenge and Responsibility:
   There is a moral, medical, economic and scientific imperative to invest robustly in international and collaborative research into the pathophysiology of ME/CFS and Long COVID, with special focus on immune, autonomic, neurological, and metabolic dysfunction.
2. Funding and Infrastructure:
   Governments, health ministries, and international bodies must designate ME/CFS and Long COVID as high-priority conditions for dedicated funding, comparable to other chronic diseases with similar or lower disease burden and prevalence.
3. Biomedical Research and Trials:
   We call for a global expansion of clinical trials and translational studies to evaluate therapeutic candidates, including repurposed drugs, for ME/CFS and Long COVID. Pharmaceutical and biotechnology companies must be actively engaged and incentivized to invest in therapeutic development for these conditions, recognizing the immense unmet medical need and potential for innovation.
4. Patient Partnership:
   Research must be conducted in active partnership with patient communities, incorporating lived experience into study design, outcome prioritization, and care delivery models.
5. Education and Awareness:
   Medical education systems must rapidly update curricula to reflect current knowledge-based understanding of ME/CFS and Long COVID, empowering clinicians and other health professionals to recognize and support affected individuals with competence and compassion.