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Can you ask a moderator how to start a new thread? We have an upcoming protest, and the protest demand document needs to include our feedback. We need to get funding from HHS to get this started.
Running in parallel to funding ongoing scientific research (that contribute to long term goals of getting treatments (assuming 10+ years from now??), we also need short term goals. Because of the ongoing disagreement on what ME is, a formal name, symptom criteria (CCC, Reeves, Fuduka, etc), discussions of psychomatic vs biologic, this has lead to confusion. ME impacts patients in countries all over the world. Globally, there are busy front line doctors, in the trenches, treating ME patients; these doctors don't have access to millions of dollars nor the luxury of time to promote themselves. They could be primary care or specialists. Due to the confusion as to what ME or CFS is, doctors maybe using a different Dx. I would like to see HHS grant money used toward reaching out to the international community of doctors who are treating patients in their clinics/offices to find out what treatments they are using, why they choose these treatments, and how many patients are benefiting from them. ME has been around for 70+ years, if you consider the Los Angeles outbreak at the first reported case.