Below is a lightly edited version of the contents of an email from Karl Morten that he has given me permission to share. The original subject, as is probably obvious, was research funding in France but the principle is universal.
"The big problem is that funding is not allocated for ME/CFS projects from the major funders. This means our research which is not at the strong hypothesis stage is not competitive in an open call.
What you need to do is push for perhaps a 2 million euro per year pot for ME/CFS research in France. This will bring in researchers with small grants 250,000 euros in 8 areas. These can run over 2-3 years.
The researchers can then then come together as a group running their own projects with opportunities to collaborate across the disciplines. This needs to be a 5 year programme to allow momentum to build. The government would have to commit to 10 million euros over 5 years.
We have had three big grants turned down on ME/CFS and Chronic Lyme. This approach might help, at the moment we can’t get this work funded! This is really annoying. With a 10 million pot for ME/CFS research over 5 years you would bring researchers into the field.
These applications are a massive amount of work and I can’t spend the time required putting these projects together and not getting them funding. The MRC proposal has taken years of research with charity funding and planning to get to this point and we are still not considered competitive in an open call.
Crucial we have a pot earmarked for ME/CFS research!! I won’t be putting in one of these big grants in again with the current funding system in the UK. However I would be happy to compete against other ME/CFS projects on a call for ME/CFS research. Open calls are a waste of time. Our knowledge base in ME/CFS is no-where near good enough to be competitive.
Governments and not small ME/CFS charities need to change this."