As far as it being in the blood supply, I personally gave blood sometime in the early nineties, and I was definitely sick then. So at least one case.
Re: writing letters etc. I definitely have the energy for this. But lets try to be united. What do we want?
1) Research? If so, into what specifically? Prevalence, transmission, treatment, testing....any thoughts? Personally, I've mentioned before, I feel that it's a bit late to be pushing for research, but if you guys think it's what we should shoot for, I'm in.
Yes we need research. All of the above. We need canadian scientists to understand XMRV, and co-infections like Lyme and Parvovirus. We need better technologies to diagnose these. We need them to work with Goff, Singh, Mikovits. We need Canada to be involved with clinical trials.
2) Physician education?
OMG do we ever need physician education. I will write to the college of physicians and surgeons urging more knowledge and education in medical school. This is when we need Dr Carruthers to come out of retirement (a la David Bell) in Vancouver BC. We need our consultant to be knowledgeable not only about XMRV, but also about ME/CFS and its morbidity (PEM and OI for instance). Did I mention my family dr laughed at me when I told her I wanted to be tested for Parvovirus?
3) Public awareness?
Goodness yes. Let's have the public a little worried about XMRV. Let's have families worried about their autistic child and asking for more fund to look up associations with XMRV. Honestly, I think that after the AIDS epidemics, the population can handle the information.
4) Doggy treats for Parvo and fertilizer for Kati?
Huh!??! Fertilizer?
5) Many other possibilities I haven't thought of?
Remember that if a patient is not passing on the information, some people that have no idea about CFS will write and won't necessarily pass the right information. Might as well do it right.
edit: glenp posted at same time...so two cases of sickies giving blood
Re: writing letters etc. I definitely have the energy for this. But lets try to be united. What do we want?
1) Research? If so, into what specifically? Prevalence, transmission, treatment, testing....any thoughts? Personally, I've mentioned before, I feel that it's a bit late to be pushing for research, but if you guys think it's what we should shoot for, I'm in.
Yes we need research. All of the above. We need canadian scientists to understand XMRV, and co-infections like Lyme and Parvovirus. We need better technologies to diagnose these. We need them to work with Goff, Singh, Mikovits. We need Canada to be involved with clinical trials.
2) Physician education?
OMG do we ever need physician education. I will write to the college of physicians and surgeons urging more knowledge and education in medical school. This is when we need Dr Carruthers to come out of retirement (a la David Bell) in Vancouver BC. We need our consultant to be knowledgeable not only about XMRV, but also about ME/CFS and its morbidity (PEM and OI for instance). Did I mention my family dr laughed at me when I told her I wanted to be tested for Parvovirus?
3) Public awareness?
Goodness yes. Let's have the public a little worried about XMRV. Let's have families worried about their autistic child and asking for more fund to look up associations with XMRV. Honestly, I think that after the AIDS epidemics, the population can handle the information.
4) Doggy treats for Parvo and fertilizer for Kati?
Huh!??! Fertilizer?
5) Many other possibilities I haven't thought of?
Remember that if a patient is not passing on the information, some people that have no idea about CFS will write and won't necessarily pass the right information. Might as well do it right.
edit: glenp posted at same time...so two cases of sickies giving blood
'Let's go get em tiger!