Good point Jenny. The ME-CFS groups do not want to be seen as a crazy mob, and it is easy to understand that research scientists are not very adept with handling the public. Any threatening letters or calls should not be tolerated, and do not help our cause.
However, comparisons to HIV (or any other research done prior to approximately 2000) would not have involved this very open communication of the internet. It has allowed people worldwide to communicate and get educated, which is a wonderful and beneficial phenomenon such as this great forum. It is time that researchers get off their high horse and come into the 21st century (especially ones working for the US government funded by taxpayers’ money).
It is too bad the US Office of Research Integrity (ORI) is within the DHHS, and is suppose to oversee the integrity of research.
However, comparisons to HIV (or any other research done prior to approximately 2000) would not have involved this very open communication of the internet. It has allowed people worldwide to communicate and get educated, which is a wonderful and beneficial phenomenon such as this great forum. It is time that researchers get off their high horse and come into the 21st century (especially ones working for the US government funded by taxpayers’ money).
It is too bad the US Office of Research Integrity (ORI) is within the DHHS, and is suppose to oversee the integrity of research.