The original question to email these guys with was, "what have you done for people with ME/CFS today". Why not ask them to start a daily online record of what they have actually done that day? Of what tangible progress they have made?
I also have concerns about an endless barrage of emails on the one hand, and being ignored on the other. But I think they can easily state their targets and do a daily or at worst, weekly progress update on what they actually have to show in terms of progress. That way, they are on the spot and know they are; and if they start to fall short, another campaign could start. Best of both worlds.
this is a great idea. why can't they let us know what they are doing for us. we pay taxes. we are ill. we deserve to know what types of actions are being taken to REALLY help us.
i don't know what we are thanking Dr, Mangan for...a name change...that does NOTHING for me. I want research and clinical trials so i can start treatments that will allow me to recover some of my health, Thanking him for a name change feels like thanking your assailant when he stops beating you....extreme example, but that's what i think.
i do whole-heartedly respect bob, rivka, charlotte and all the others who have organized this advocacy....so i do not mean to be disrespectful to them...but i think we need transparency from the govt. on what actions are being taken to really help us...not just a name change.
everything in this disease is a big mystery...there is never any easy, open access to anything: good drs, treatment, current research, etc. i feel like i am constantly searching for the golden key to unlock everything.
oh one other thing.....will they really not help a group of seriously ill patients who may be harboring a deadly, transmittable retro-virus because we annoy them or they don't like us. if that's the way they do things they (the govt) are f...ing

:Retro mad:crazy!!!!!
ok sorry for the rant...onward and upward.
