I do not mind what they name the virus. However, I strongly object to changing the name of our illness and so should other patients.
The correct name is M.E.
Thee big problem with our illness has been the name CFS, given by the CDC, which was followed by a 20 year campaign saying CFS is a psychiatric illness. I say, that we should stand up for ourselves, and that if the patients want it called ME, then that is what it should be. What right does yet another doctor have to impose yet another name, without respecting the patient community, or the original naming doctors. Again!
Many patients around the world have spent years campaigning for the name ME. Are we going to trash the efforts of those terribly sick people, some of whom are no longer with us ? What arrogance of any doctor or administrator to do so ?
HGRAD is ok as an umbrella term for all human gamma retrovirus disease if they actually want it, but I suspect it will not last even as an umbrella term.
It is time to consider three things.
First is the international press story that will come soon. That needs a pronounceable and easy to remember name, and ME works perfectly.
Second we have to think of the future legal battles. To ensure that the CDC and the Wessley school get what is coming to them in a court of law, it is necessary to retain the name CFS for a while. In that case we must temporarily use the name ME/CFS and not the other way around as the Wessley people are pitching. Don't let the CDC and Wessley off the hook by changing to yet another new name. Some of you may not want to pursue justice in a court of law, but please do not weaken our case for those of us who will be seeking legal justice.
Third, ME should be remembered for the scandal of the last 20 years, the greatest medical scandal of modern times. ME, being the original name, imposes understanding of that story. A completely new name, not only let's all of the criminals escape justice, but erases the lesson that needs to be recorded in medical history.
It would be good if this forum could decide on this and speak with one voice on behalf of the patients.
Let the researchers name the virus. But we the victims own the name of this illness, and we call it M.E.