Jesse2233
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In Llewellyn King's interview with Walter Koroshetz, Koroshetz states that the main challenge is getting new researchers interested in contributing to ME/CFS.
For the sake of conversation, let's aside the fact that there are excellent research grants NIH is currently not funding, and that the amount of funding NIH is contributing to those they are funding is not enough.
How does one market a disease to researchers?
Is there anything patients can do to attract more researchers? How do you identify the right researchers? And are there effective pre-existing models for this?
I would assume one would want to draw in researchers from complementary fields such as immunology, neurology, metabolism, infectious disease, genetics, and endocrinology.
But in practice how does that work?
Can one expect to email a researcher whose career is tied up something entirely different and expect them to contribute?
Does one appeal to the challenge of solving the mystery etiology or ameliorating the immense unattended suffering?
Is this even a practical question for patients to consider?
What Jen Brea is doing is likely the best broad based strategy (e.g. raising awareness of the general public). And Ron Davis and Zaher Nahle are great examples of how to draw in researchers from within the scientific community. But what can informed outsiders (with limited energy and resources) do?
For the sake of conversation, let's aside the fact that there are excellent research grants NIH is currently not funding, and that the amount of funding NIH is contributing to those they are funding is not enough.
How does one market a disease to researchers?
Is there anything patients can do to attract more researchers? How do you identify the right researchers? And are there effective pre-existing models for this?
I would assume one would want to draw in researchers from complementary fields such as immunology, neurology, metabolism, infectious disease, genetics, and endocrinology.
But in practice how does that work?
Can one expect to email a researcher whose career is tied up something entirely different and expect them to contribute?
Does one appeal to the challenge of solving the mystery etiology or ameliorating the immense unattended suffering?
Is this even a practical question for patients to consider?
What Jen Brea is doing is likely the best broad based strategy (e.g. raising awareness of the general public). And Ron Davis and Zaher Nahle are great examples of how to draw in researchers from within the scientific community. But what can informed outsiders (with limited energy and resources) do?