CDC I forgot one of the major causes of under reported CFIDS sick
When I was first sick, I could do nothing. Literally nothing but sleep 22 hours a day. It was almost impossible for me to sit up at a computer and read or type. So for the first several years of a diagnosed CFIDS, I did not touch that computer except for a few minutes to see what Dr. Cheney had promoted as good meds and vitamins. That was it for me. I'm sure that others don't have the energy either to sit at a computer, go to support groups, hit the library, or really get up and out of the bed. Hence, no information and no way to get a diagnosis and treatment.
Being just too sick to get out of the house, get on a computer, get to a doctor, get to a support group, etc. is yet another major reason for underreporring of the real CFIDS/ME sick. They really are invisible and have no choice but to stay in their homes and beds. I know, I was there in that bed for 22 hours a day and a big day was making it down the stairs from the bedroom to the kitchen to eat Rye bread dipped in Olive Oil twice in one day. Odd food mix I know, but I must have needed the Olive Oil for some reason because that's all I craved and could eat.
It's those very sick, bedridden people who don't have others to help, protect and defend them that are not getting to a doctor for any sort of diagnosis and treatment. I think that if somehow we were to see those numbers it would be quite upsetting knowing that those poor folks are all alone living in their own personal hell. I could just explode with rage at the CDC for hurting those sick people, those without money/insurance, and to the young for the damage the CDC has done over the past 25 years.
Demean the disease, destroy funding and real research and ensure that the doctors and the public either don't know about this disease or think we are all lazy or crazy or both. Tina was dead on that CFIDS/ME people do get misdiagnosed with depression and then get put on the dangerous meds that make the situation far worse. The CDC's plan worked great - we really are invisible to everyone - for now. But it won't work any further after the studies are out and WPI and other orgs continue to do real research. Their ugly plan will backfire so badly on them once all the XMRV info is out and the CDC and other health orgs have been shown to be hiding a terrible disease and then a deadly retrovirus. Expect to see massive investigations, strangling oversight, and budget cuts to the likes of the CDC for this massive cover-up and the deadly consequences that have grown over the last 25 plus years.
So back to this campaign. This is the reason we must have major media attention. People don't know what ME/CFS is. They don't now that a new Retrovirus is out there and when the papers come back showing positive evidence on this probably deadly virus, they won't know about that either because the Federal health orgs are too terrified to let the public know what's going on. Damage control for those orgs while people are terribly sick and dying from this disease. Once the public finds out about THIS it's going to be one heck of a show. And I intend to sit back, make myself popcorn and watch the fireworks.
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