@Wally Somebody from this forum who is watching this thread actively had told Prusty that I was trying to collect funds on his behalf. I had introduced some people on this forum to Prusty who contacted me saying they would like to fund him and I also told them there is nothing in it for me. But whoever this person who told Prusty had told him things like I was trying to make money using Prusty. I have always said and I maintain that I dont get even a penny from Prusty or the donor for what I am doing. I am just helping Prusty so that he can help us find a cure.
I know who that person who is spreading such wrong statements about me. But he or she is hiding under a nickname on this forum. So I dont want to drag this topic any further. If you want to fund Prusty you can contact him directly at his email id given at the beginnng of this thread.
@raghav - Sorry that someone here on the Forum would have made those kinds of misrepresentations about you to Prusty. I always thought you were someone who was excited about the potential of his research for this community and you were just trying to share what you knew. to keep patients in the loop with up to date info. about what he was doing. Without seeing some of your posts, I may not have seen he was continuing to post/tweet updates about his research on Twitter. So, I and I am sure others, appreciate your contributions to the Forum. Hope you don’t let the negative experience get you down. Advocacy for this illness often leaves most of us feeling a bit bruised and battered.
Once, Prusty’s paper is published, I am sure there will be opportunities for people to come together to volunteer for a campaign to help raise funds to support his research. You definitively contributed a lot just making the effort to make contact with him and to let people know where he was providing updates about his research.
Hope you keep sharing information even if it throws you in the hotseat for all the questions Members here on the Forum might have, while anxiously waiting for his paper to be published. Also, I don’t think a lot of people are trying to hide behind a fake name, but maybe some do this. When I was first introduced to another ME/CFS Forum, I was told to use a nickname because that is how the Forum was run except for the Administrator. It was pretty much the same here on the PR Forum, Cort Johnson used his full name and most people used a nickname.
When I am actively involved in advocacy for this illness, I use my full name. Just use my nickname when I am hanging out doing general posts on the Forum. P.S. Wally was the name of one of my devoted, lovable beagles who would stick to me like glue helping me through some really tough times when I have been bedbound with this illness. I still use the name Wally in remembrance of my four legged buddy. FYI - my first name is Susan. Wally’s (the beagle) full name, was Wallace Alvin Cleaver. Wally Cleaver is the name of an American TV Show called “Leave It To Beaver”. Why I picked it for my dog’s name was just for fun and the middle name of “Alvin” was in honor of my Dad’s middle name. He had a great sense of humor and he would have thought it was very funny that a dog received the honor of being named after him. 🐶🤣
