Saturday, April 12, 2014

CDC Stalling and Diverting Funds for ME/CFS Research

Dr Vincent Rocanilla is a colleague of Dr Ian Lipkin at Columbia University.

They have research ready to promote and no funding. They are crowdfunding to hasten accessibility to patients and doctors (and the evil pharma - keep an eye on how this plays out but first watch the movies: Dallas Buyers Club and Constant Gardner.

Please support Dr Lipken's research and send a strong message to politicians and pharma that we CAN go around them. Your financial support does that. Here's the link: 

Even as all this happens I fight to find a doctor who knows anything about my illness. The only doctor in Florida, Dr Nancy Klimas, at Nova Southeastern, doesn't accept my federal Blue Criss insurance, has a 200 person wait list And will cost me out of pocket up front between $1800 and $300 cold, hard cash that I don't have. Double that for my husband who also has the illness - onset 3 yrs ago.

Verified test results:
Low IGg immune system factor
High blood titers on all herpes viruses except one
Confirmed diagnosis of Disseminated Herpes Simplex 1 in my lungs from a bronchoscope 
4 sleep studies over 8 years that show zero stage 3 and 4 sleep - so no cell repair hormone HGH
Confirmed irregular heartbeat
Severe multiple chemical sensitivity

I have 100% of the recognized symptoms, the best insurance money can buy and yet I still don't have an officially recognized illness.

I have all this now and still have no diagnosis that is recognized by my doctors or insurance. Do you know in the US it is illegal to name an illness that doesn't have a drug to treat it?! Is that backwards?!

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