Unfortunately, our condition attracts a lot of pseudoscience so I have always felt that it is important to speak about this subject. I feel a great disservice has been done to our community in the last few years. A lot of advocacy has ended up backfiring and has caused people to look at our condition in a negative way. Yes, at least more people know about our condition but this all could have been concluded a long time ago. Hopefully we have learned from this. This is why I think it's important for people to speak out just as you feel it is important for you to speak out. I do not see it written anywhere in the rules that you have to believe in XMRV to join a discussion. THAT would be rather condenscending and I am simply expressing my opinions/conclusions based on my interpretation of the science with a little help from reading/listening/learning from researchers/experts and other sources I trust. I do not blindly follow anyone.
My opinions just happen to not agree with some people. They are just opinions. If people disagree that's fine. What other people think about me is not important. Being an advocate is. Being an advocate means not being intimidated to stop posting as I feel this information needs to be out there. After all, it is my health and life involved here. I want my life back. I want to be well again.
If the moderators feel differently, feel that what I post is inappropriate, that's a different story as it's not my forum.
I am science based and will keep on posting to include my two cents worth. There are other people on this forum who are far more knowledgeable about science than I am.
I guess I could ask you the same thing. If you find these topics distressing then why post? How do you get the energy to do this?
I have answered the above questions many times so will not bore people by answering again. You can always look up my posts. I also believe there are unanswered questions but as far as priorities go, I think a different direction is called for.
If we were talking about another topic where there were two studies that ended up not being valid and a lot of other studies which disproved the original, why would we go for the first as the resources for studying our condition are scarce. Again, it's priorities.
I don't have to explain to why I post, but I have. I am not obliged to keep answering questions if they have already been answered or if I feel they are not relevant. I have to conserve my energy for what I think is important. Even then it is sometimes a struggle.
I really think it would help if you looked over the rules of debate and why it is important to look at all sides of an issue. We need to be informed consumers and in the long run this will benefit our community.
I think you underestimate the number of people either on this forum or out in the community who feel as I do.
If you try to analyze me and try to" understand" me, it will drive you crazy.
Let that part go. But keep debating the issues, it can only help our cause, eh?
Take care.
Barb. C.:>)
Thanks for answering my question, barb.
Off course you have every right to post on XMRV threads, as I said in my previous post.
My question was a genuine question, probably born out of frustration, and not an attempt to silence you.
I asked the question because you brought the subject up in the first place - Questioning people's motivations etc.
My feeling is that the fundamental reason why XMRV debates get so heated sometimes, boils down to something you just said:
I feel a great disservice has been done to our community in the last few years. A lot of advocacy has ended up backfiring and has caused people to look at our condition in a negative way.
I can understand why opinion that would lead to frustration.
However, I fundamentally disagree on that conclusion.
I think the opposite is true...
I am of the opinion that the XMRV saga has utterly transformed the world of ME for the better.
I truly believe that there is more hope now, and more progress and funding, as a direct result of XMRV.
My thoughts on this are backed up by people like Suzanne Vernon, of the CAA, who, in one of Cort's latest articles, said the same herself: that XMRV has transformed the field of ME research. And she is not known to be a great fan of XMRV.
So I don't think that XMRV has been a distraction, but I think it has been transformative, and that it has focused minds, brought in funds, and brought in fresh high-profile researchers who would never have got involved with ME otherwise. That's exactly what Suzanne Vernon seems to think as well.
Also, I don't think the XMRV research has been a waste of resources, because it has opened up ME research into immune-related avenues which have been productive, and it has brought different fields together which is also productive. Even if there is no association between ME and XMRV, none of the research has been a waste, because it has led to a deeper understanding of mouse retroviruses and shone a light on the dangers of lab contamination and novel cell-line viruses. It will have advanced the science of retrovirology and the science of viral detection.
Personally, I believe that the XMRV saga has been a totally positive force, and I don't see any negatives whatsoever.
I think that anyone who thinks that ME advocates have done our community a disservice, can't have been aware of what things were like beforehand, just three of four years ago, when Reeves was in charge of the CDC.
I don't think it was possible for people to look at our community or our illness in a more negative way than they did in the past.
We were ignored, dismissed, laughed at and ridiculed, and that has been the case ever since the CDC went to Dr Petterson's practise in the 1980's.
I found the level of contempt to be deeply alarming.
And I've only seen things transformed in the past couple of years. It's almost unrecognisable to how it was when i became ill 8 years ago.
At that time, we had Reeves in control of everything in the USA, and Wessely in control of everything in the UK.
It was an utterly dire situation.
Now the leadership at the CDC has been changed, and Wessely seems to be losing his influence over here...
We have biomedical research funding again, and the diagnostic criteria are being changed at the CDC.
The MRC are taking ME seriously.
OK, so things still aren't good enough, but I just can't believe the transformation that i've seen. I just didn't think it would happen.
The only major blots on the landscape, that comes to mind right now, are the disappearance of Jonathan Kerr, and the publication of the PACE Trial.
But the PACE Trial is a throwback to past practises - I don't think it will ever get repeated now.
Maybe I'm being overly-optimistic again, as I have a habit of doing, and maybe there are other major blots on the landscape.
But it seems to me that things are moving in the right direction, and the landscape has been transformed.
Look at what Dr Petterson is doing, and who he's working with.
Look at Lipkin.
Look at Bond University.
Nancy Klimas.
The Light's.
I wasn't aware of this level of top quality research being carried out before XMRV hit the headlines.
I'm not entirely comfortable with some of the styles of advocacy either. I think
some of it has been too vitriolic and unpleasant.
But I firmly believe that it is up to patients to hold the establishment to account, because no one else is doing it.
If that makes the establishment uncomfortable and sit up and take notice of us, then I think that's preferable to being ignored and ridiculed.
I know that some researchers have complained about some patient advocacy tactics, but these patients are only holding people to account, and rightly so in my opinion. If we sat back and did nothing, then Reeves would still be controling our destinies.