SOC
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Not sure this is in the right place, but with all the discussion about communicating with/changing the CDC, I thought this might be useful for advocacy purposes.
The CDC is NOT a medical research facility. It is a Public Health organization.
Notice the lack of original research, funding for research, lobbying for funding, or almost anything about newly discovered illnesses.
The only mission they have that could be related to a new or mysterious illness is,
"detect and investigate health problems", which they fell flat on their faces on over 25 years ago in Incline Village.
IMO, they have no business in ME/CFS at all until we know enough about it to expect "prevention" and health professional training.
Rather than wasting our time on the CDC, shouldn't we simply be insisting they get out of the ME/CFS business and concentrate our efforts on research organizations?
Anyone else have thoughts on this?
The CDC is NOT a medical research facility. It is a Public Health organization.
[my bolding]CDC Mission
Collaborating to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.
CDC seeks to accomplish its mission by working with partners throughout the nation and the world to
monitor health,
detect and investigate health problems,
conduct research to enhance prevention,
develop and advocate sound public health policies,
implement prevention strategies,
promote healthy behaviors,
foster safe and healthful environments,
provide leadership and training.
Those functions are the backbone of CDC′s mission. Each of CDC′s component organizations undertakes these activities in conducting its specific programs. The steps needed to accomplish this mission are also based on scientific excellence, requiring well-trained public health practitioners and leaders dedicated to high standards of quality and ethical practice.
Notice the lack of original research, funding for research, lobbying for funding, or almost anything about newly discovered illnesses.
The only mission they have that could be related to a new or mysterious illness is,
"detect and investigate health problems", which they fell flat on their faces on over 25 years ago in Incline Village.
IMO, they have no business in ME/CFS at all until we know enough about it to expect "prevention" and health professional training.
Rather than wasting our time on the CDC, shouldn't we simply be insisting they get out of the ME/CFS business and concentrate our efforts on research organizations?
Anyone else have thoughts on this?