Ive never seen its website. What XMRV scandal? as far as Im concerned there never was a scandel with that, yes many ME/CFS went and got tested with an unapproved test but that was always at a do at your own risk thing, everyone knew XMRV wasnt proven and needed more scientific confirmation at that time (hence why I was in wait and see mode all along). Many of us including myself pointed out to other ME/CFS patients that it was a do at your own risk test till confirmed. People knew it wasnt offically approved (even the ones who were doing the test were saying tha). Anything not offically approved is always do at ones own risk. and yeah it did bit many in the butt but that's what happens when one takes risks whether with unconfirmed tests or with the experimentation treatment many of "us choose" to try. No one was forced or mislead to take a unapproved test. So I dont understand that comment you made about the canadian group exposing XMRV scandal. Im sorry that you assume that Im far weller then I are... if I was goggling everything all the time I'd be wrecked and in bed and not even be able to come here. I just really focus on this site online as that is all I can manage. Obviously you do not understand people who are extremely ill with ME. I would of known about that group previously, I used to know who did the canadian definition but forgot. I have memory problems and forget things all the time!!! Im sorry that you dont seem to understand that either. Yes many patients have both ME and FM, Im not at all disputing that. I even had FM myself for many years. What Im against is putting focus on any one of our symptoms over the res,, it can mislead people who dont know about our illness!!! I have also felt very out of place in a ME/CFS and FM group, nothing worst with going to a support group and find out that no one has what oneself has (they actually asked, "who here has FM?" and about 14-25 or more people (the small room was half full) raised their hand.. and then "who has ME/CFS?".. and there was only me and I think there may of been one other (I cant remember now, I may of found I was alone). It was like the ME/CFS group had been taken over and the discussions I couldnt relate to at all due to them not being ME people!! You obviously yourself havent experienced something like this or you'd be more understanding towards how Im feeling about it. The FM people handled the talk fine while I was slumping in my chair almost falling out and almost falling asleep during the talk. I felt soo very out of place) and my state compaired to the FM people, I found embarrassing (as I was so different). Im not the only one who has gone throu this in a combined ME/CFS and FM support group, someone posted on a thread yesterday about how she too had an aweful experience like this in a rant thread and like myself, felt all alone there cause she was the only one there who had ME/CFS. There is nothing worst then feeling very isolated then going to a support group for your illnes while very sick so to have others like oneself to speak too but then no one there has your illness!!!! when its supposed to be a ME/CFS and FM group!!! So yeah, I do have a fear there when FM is put in name as I have seen how FM people as there are more of them out there, can end up overdominating completely a group. So sorry if Im negative about that but I myself have good reason for it as I have been affected by when support groups put ME/CFS and FM into their titles due to this. Well it isnt a group of bird watches!! I appreciate all the group you are talking about has done... but it isnt a well known leading group now. (its not known outside our communities and many of this community wouldnt have known who they were.. they do not advertise their group well, If I polled even here, do you know who National ME/FM Action Network is and what they have done for us.. what percent here would know without reading this thread?). As I said, I'd forgot who they were. The CCC was done a long time ago now. That isnt to say at all I dont appreciate them doing that, for I do. Im just big on that to move forward ME has to be focused on (I'd like all the groups to put just ME in their names rather then water down what ME is by other things whether FM or Fatigue", so sorry if you dont understand this. One cant say we've had much progression with the things being how they are now!!. I cant even get the care support Im needing due to us still being in like the dark ages over this illness!!! So please do not tell me that enough is already being done!! Do you often not even get to eat due to this illness and being too sick to get food? is an ambulance having to be regularly called for you as you've got so weak you cant get a drink or even sit up?? NOT ENOUGH IS BEING DONE!! People like myself are at risk of death. Im not going to knock people wanting to do more and start a group. You can be content if you wish at the current situation, but my life is at risk. The only way to get groups to change their names is to not support them much if they carry names one doesnt agree on even if they are doing good things (I never said this group isnt), or otherwise things wont change! I do not wish for things to continue on how they have been, hence I myself do want change! I'd leave PR due to its name if there was a good friendly ME site out there. I got to do what I believe will help our situation and having other illnesses lumped in with ME has shown it doesnt!!! (All those with ME wouldnt be in the current horrid situation around it otherwise) I feel quite strongly about this. Obviously you and I think quite differently about things. Im not singling your group out for an attack.. Im just sticking to my beliefs and what I see as being a big cause of us not being taken seriously (the watering down of ME in various ways be it by having our groups full of others with different illnesses or whatever). I do not understand why you are so against a new group which should be helpful to other groups out there. I guess we both will have to agree to disagree.