slayadragon
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http://paradigmchange.me/wp/?p=327
This blog describes a new letter from ME/CFS advocates to be sent to Secretary Sebelius, once again asking that the IOM involvement be dropped and the Canadian Consensus Criteria be adopted as the definition for the disease.The same text will be on Jeannette Burmeister's blog, "Thoughts about M.E."Please consider signing!
>We again request that the IOM contract be cancelled and that the government adopt the Canadian Consensus Criteria as the definition for this disease.
>In addition, we request that the government increase the budget for biomedical research into this disease to become more equitable with the budgets for other diseases with a similar level of prevalence and severity. For instance, NIH spends more than 600 times as much on HIV/AIDS as it does on ME/CFS (with a 2014 budget of $3.1 billion for HIV/AIDS vs. a trivial $5 million for ME/CFS). Considering that the number of U.S. patients living with ME/CFS (1 million) is roughly the same as the number of people in this country living with HIV, and considering that the level of suffering endured by many ME/CFS patients is equal to that experienced by untreated AIDS patients prior to their deaths, ME/CFS is woefully underfunded. This needs to be rectified immediately.
>Finally, we request that the government consistently refer to this disease by its proper name, Myalgic Encephalomyelitis (ME).
This blog describes a new letter from ME/CFS advocates to be sent to Secretary Sebelius, once again asking that the IOM involvement be dropped and the Canadian Consensus Criteria be adopted as the definition for the disease.The same text will be on Jeannette Burmeister's blog, "Thoughts about M.E."Please consider signing!
>We again request that the IOM contract be cancelled and that the government adopt the Canadian Consensus Criteria as the definition for this disease.
>In addition, we request that the government increase the budget for biomedical research into this disease to become more equitable with the budgets for other diseases with a similar level of prevalence and severity. For instance, NIH spends more than 600 times as much on HIV/AIDS as it does on ME/CFS (with a 2014 budget of $3.1 billion for HIV/AIDS vs. a trivial $5 million for ME/CFS). Considering that the number of U.S. patients living with ME/CFS (1 million) is roughly the same as the number of people in this country living with HIV, and considering that the level of suffering endured by many ME/CFS patients is equal to that experienced by untreated AIDS patients prior to their deaths, ME/CFS is woefully underfunded. This needs to be rectified immediately.
>Finally, we request that the government consistently refer to this disease by its proper name, Myalgic Encephalomyelitis (ME).
