K
Katie
Guest
A little off topic but what happens to ME/CFS advocacy groups if XMRV is proven to cause ME/CFS symptoms in a subset, let's chuck out 60% as a theoretical number from my head. How should the group move forward? Should they devote energy towards the 40% left XMRV-? Should they focus on pushing for XMRV funding, treatments and further research? Can they do both?
A huge fracture is going to occur in all groups around the world. Those within the organisations with ME will move towards XAND/XMRV activism if they are found positive and those who are negative will remain or restart their group to continue the fight. Doctors and non-ME'ers will scatter, some following XMRV and some remaining though I see most following XMRV.
This is what concerns me for the future. There's a lot of if, buts and maybes to address but if XMRV pans out then we are in for a huge and disorganised upheaval which will benefit XMRV/XAND much more than CFS which in XMRV's wake will be left stranded, disorganised and open to more psychologising and opportunistic predators pushing their cures and snake oil.
A huge fracture is going to occur in all groups around the world. Those within the organisations with ME will move towards XAND/XMRV activism if they are found positive and those who are negative will remain or restart their group to continue the fight. Doctors and non-ME'ers will scatter, some following XMRV and some remaining though I see most following XMRV.
This is what concerns me for the future. There's a lot of if, buts and maybes to address but if XMRV pans out then we are in for a huge and disorganised upheaval which will benefit XMRV/XAND much more than CFS which in XMRV's wake will be left stranded, disorganised and open to more psychologising and opportunistic predators pushing their cures and snake oil.