Eeyore
09-03-2001, 12:58 AM
Hello,
Im a newbie to this forum. Ive read many of the posts here and it seems like quite an eclectic and caring group.
I am a little hesitant about posting here though because of my recent changes in thought regarding this illness. In fact for a long time I wouldn't for this very reason. I really dont want to offend. But I have a question as well as some statements about CFS. It is not retorical but sincere. I haven't read much of the research in the last couple of years and I may be a little out of touch. Things can change fast.
The question: Where is there any hard evidence of a viral cause for this syndrome? Ive looked for it and it just isnt there. Im not saying it is not virally caused but I hear people talking like it is fact...when I cant see where it has been established.
Years ago when the EBV test proved effective in helping to Dx and treat those with CFS many thought this meant EBV was the cause. It has LONG been shown to not be the case. The test is effective because IF you have been exposed to the virus the antibodies are there for life...and IF you have immune disfunction the EBV titers may show it. Has this changed in the last year or 2?
What I want to say is not meant to be antagonistic. I know that many here will disagree but I think that there is no harm in considering all angles. As someone long ago Dx with CFS who has read and read about it I have a vested interest in getting to the bottom of it.
The trend that I see and was once a big part of is: It HAS to be viral. I remember when I would try to educate others about the illness I would say it was most likely viral or many experts believe it is caused by a virus.
I would say this only because I thought it would add validity to my illness. Like if it is caused by a virus THEN it is real.
It is real and serious regardless.
But reading the latest info from CFS advocacy groups scares me. I am afraid that IF it is not caused by a virus then we will never know the cause because so many patient advocacy groups will not allow the doctors or reaserchers to consider any other options.
Like we are saying to them: FIND THE VIRUS THAT CAUSED THIS NOW! And dont even think of looking anywhere else.
Am I way off base?
I mean I am genuinely afraid of this trend.
eeyore
Im a newbie to this forum. Ive read many of the posts here and it seems like quite an eclectic and caring group.
I am a little hesitant about posting here though because of my recent changes in thought regarding this illness. In fact for a long time I wouldn't for this very reason. I really dont want to offend. But I have a question as well as some statements about CFS. It is not retorical but sincere. I haven't read much of the research in the last couple of years and I may be a little out of touch. Things can change fast.
The question: Where is there any hard evidence of a viral cause for this syndrome? Ive looked for it and it just isnt there. Im not saying it is not virally caused but I hear people talking like it is fact...when I cant see where it has been established.
Years ago when the EBV test proved effective in helping to Dx and treat those with CFS many thought this meant EBV was the cause. It has LONG been shown to not be the case. The test is effective because IF you have been exposed to the virus the antibodies are there for life...and IF you have immune disfunction the EBV titers may show it. Has this changed in the last year or 2?
What I want to say is not meant to be antagonistic. I know that many here will disagree but I think that there is no harm in considering all angles. As someone long ago Dx with CFS who has read and read about it I have a vested interest in getting to the bottom of it.
The trend that I see and was once a big part of is: It HAS to be viral. I remember when I would try to educate others about the illness I would say it was most likely viral or many experts believe it is caused by a virus.
I would say this only because I thought it would add validity to my illness. Like if it is caused by a virus THEN it is real.
It is real and serious regardless.
But reading the latest info from CFS advocacy groups scares me. I am afraid that IF it is not caused by a virus then we will never know the cause because so many patient advocacy groups will not allow the doctors or reaserchers to consider any other options.
Like we are saying to them: FIND THE VIRUS THAT CAUSED THIS NOW! And dont even think of looking anywhere else.
Am I way off base?
I mean I am genuinely afraid of this trend.
eeyore