Clearly many of us are deeply disappointed by the news that the Rituximab phase III trial was negative. For me, this is déjà vu all over again. I first started researching cfs around 1993 when I was first diagnosed (5 years into my illness). I found positive news items about an experimental drug that was being tested. Doctors who were treating cfs patients reported encouraging results and said that it should work given their theories about what causes cfs. I thought to myself, "Maybe I only have to live with this for another year or two years because this drug will work and get approved." Then I noticed that the news articles I was reading were several years old. The drug was Ampligen and it never panned out as an approved cfs treatment.
I'm sure that what I'm about to say will be controversial, but I offer it as sincere advice from someone who has lived with this disease for many years. You should give up on believing in a cure. Spending your precious energy on hope and following every minute detail of the latest research is ultimately not helpful. Don't ignore research entirely, but don't let it consume you. Move on.
For me, that led me to finally accept the loss of the person that I was before I got cfs. That was so painful for me that I wanted to kill myself rather than accept it. I really liked the person I was before and I didn't want to let him go. But I had to. That was the first step in being able to focus my limited energy on discovering the person I am today and who I can be tomorrow.
I do think there is reason for more optimism today. Ron Davis and the folks at the Open Medicine Foundation are doing really innovative research with world class scientists. Robert Naviaux has novel ideas that show promise, although I worry that Suramin will become the new drug we chase after. The recent funding of NIH sites for cfs research is a great step forward. Other than the disastrous PACE study, the trend in general has been towards better understanding among doctors, researchers, politicians, and the general public. So perhaps Ron Davis is right when he says he thinks we can find a cure relatively soon.
For me, I continue to assume there will be no cure. If a cure is discovered, I will be the first to apologize to those who were offended by this message because they think it is better to hold on to hope. We all have to make our own choices about how to deal with this disease. My advice is to consider living the best life you can assuming there will be no cure. It's working for me. I have a pretty good life although it's different than what I had before. And if a cure comes my way, I will have the chance to meet yet another version of myself because that future me is certain to be different from who I was before and who I am today.
I'm sure that what I'm about to say will be controversial, but I offer it as sincere advice from someone who has lived with this disease for many years. You should give up on believing in a cure. Spending your precious energy on hope and following every minute detail of the latest research is ultimately not helpful. Don't ignore research entirely, but don't let it consume you. Move on.
For me, that led me to finally accept the loss of the person that I was before I got cfs. That was so painful for me that I wanted to kill myself rather than accept it. I really liked the person I was before and I didn't want to let him go. But I had to. That was the first step in being able to focus my limited energy on discovering the person I am today and who I can be tomorrow.
I do think there is reason for more optimism today. Ron Davis and the folks at the Open Medicine Foundation are doing really innovative research with world class scientists. Robert Naviaux has novel ideas that show promise, although I worry that Suramin will become the new drug we chase after. The recent funding of NIH sites for cfs research is a great step forward. Other than the disastrous PACE study, the trend in general has been towards better understanding among doctors, researchers, politicians, and the general public. So perhaps Ron Davis is right when he says he thinks we can find a cure relatively soon.
For me, I continue to assume there will be no cure. If a cure is discovered, I will be the first to apologize to those who were offended by this message because they think it is better to hold on to hope. We all have to make our own choices about how to deal with this disease. My advice is to consider living the best life you can assuming there will be no cure. It's working for me. I have a pretty good life although it's different than what I had before. And if a cure comes my way, I will have the chance to meet yet another version of myself because that future me is certain to be different from who I was before and who I am today.