@CBS Thank you for explaining what some of those acronyms mean although I still have no idea who the people are behind the petition!
In any case, my position is not political and want to explain it. I will just do it here once and see what people think as maybe I am naive politically but this is my gut instinct.
Right now the top leaders and scientists at OMF are having high levels meetings with the govt to try to get funding for the severely ill patient study (which IMO is the best chance we have ever had to find the bio-marker.) We need govt funding to do this and we need it soon. We have a window of opportunity while this issue is fresh on their minds and we need to focus on getting funding for real, biomedical research such as this.
If the govt views patients as ungrateful and sending in negative petitions that we will only accept "ME" or "Ramsay's Disease" (or other names?) to me this is a negative distraction from the true issue which is funding this OMF study. We want them on our side and alienating people with these petitions seems the wrong way to go about it.
While I would personally be very happy to adopt the name ME or Ramsay's Disease here in the US, it does not seem that this is a reality. But it could be a reality that the govt helps to fund the Severely Ill Patient Study at OMF. Behind the scenes, they are fighting very hard for us and we need the govt on our side. It seems illogical to turn against the best chance we have of getting help.
Where am I going wrong here? Getting these studies funded will help ME/CFS patients world-wide and not just in the U.S. I mean no disrespect to anyone, I just want to see our limited energy go in the right direction toward something productive to help our entire community. I have no loyalty to any group or acronym except to us as patients and to the researchers who are working tirelessly to help us. Thank you for reading.