Well, I am so glad to see so many agree with me. I had seen so many declare Kerr goes in the "good guy" category that I figured I would be way out of Phoenix Rising mainstream to say I don't agree with the subtypes theory. By the way, Kerr is not the only one saying there are subtypes. CAA is using similar terminology. I'm glad I am not alone in my thoughts on this matter.
Gerwyn and George, you are right in line with what I think. A retrovirus (today's suspect being XMRV) can cause abnormal gene expression. And, it may be location of the virus in the genome, different outside triggers that stimulate XMRV to affect other genes to possible or just genetic differences in people that causes different gene expression.
Now, I guess that doesn't mean that you can't separate people into groupings, but I think we are having too much of the human need to attribute labels being an influence here. I mean, 7 different subsets? I mean, why not nine based on gene expressions. So if there is this person with five genes (that is A, B, C, D and E) abnormal but next patient has same abnormal gene activity (A, B, C, D, and E), but also has F is acting abnormally, that means the two people have different diseases? uh uh, we have a lot more in common than we do different. The thing that makes the difference is that both people have some of the same genes acting abnormal while a healthy person has none of them acting abnormally.
And has been mentioned, there are stages. I ended up "severely" ill. But I only had depression for two months. And that was in response to extreme pain, frustration and loss of hope at not being able to find a doctor, and much worse pain. As soon as I found a doctor that seemed to know what he was doing, my depression lifted. In years, that has been it.
My symptoms come and go. months with this set of symptoms, then months with another. I went almost a year without sharp pains. They just came back two weeks ago.
And I wonder, where is the easy bruising gene? Does that make me a different subtype? oh, and the vertigo gene activation.
Now, I do think listing different symptoms or gene abnormalities will be helpful in treatment. But I don't think you can categorize them into separate groups. As has been said, we are all just one illness with a variety of symptoms (or gene activity abnormalities). So the idea should be that everyone's CFS is unique.
But humans tend to do this with other things to. Race is just a human creation of "subtyping" people according to physical characteristics. The real truth is that we are all humans and we all have a unique mix of physical characteristics.
For example, my brother-in-law is of Sicily descent. He has the Roman nose, the slightly olive skin. But he has hair like an African, true Brillo pad. And just where does Tiger Woods fall?
We are all just human.
As for those of us that spend our time looking at message boards to find out the latest study, I mean all of us, we all just have CFS. Each of us is unique, with our own unique illness, but we all have the same disease.
I am not going to say that grouping together by symptoms for research might not be beneficial. And I don't know if we can rule out multiple causes. But it seems clear to me, we all end up suffering with the same disease.
Now, I have a suggestion, why don't the Lights (at Utah) and Kerr and WPI get together and see if we can put these pieces together to come up with one answer?
Tina
