Researchers need to start striking, all over the world. Not just for ME, but for any chonic underfinanced chronic illnes.
They are the brains, the reason to our wellfare, the people that have to cure cancer, turn stemcells into organs etc....
They are so powerfull in a certain way and they have the right to exploit that fact for the "general wellbeing of humanity".
In Belgium we spend 30 billion euros on healthcare (i think government budget is about 100 billion). This is generally accepted and not critised, so why does a rationale investment of a few millions in our health need to be so difficult?
The cost/burden for society on this disease is massive and totally disproportional with the money invested in it (don't even wanna think about the ratio). A resolution for this disease would benefit both economy and the patients so much!!
So I think if researchers strike and bring these facts to the media, most people would understand and push politics for more funding. Politicians often know very little of medicine and research, so they need to be pointed to the facts.
In Belgium we're quite good at striking, the national train-staff strikes about every 3 months, for most trivial reasons. It's so fustrating and economically devastating but they allways get away with it. If scientists explain it well, most would definatly compedhend.