April 7/8 NIH State of Knowledge Conference - watch online to show our support!
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Bob
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That's what I've read as well.
(I'm pretty sure that this only refers to the 8 or 9 patients who had their blood freshly drawn by Alter/Lo and retested.)
Cort
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I believe he was able to find antibodies and XMRV - if I remember correctly.
Cort
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That's what I remember hearing but my guess is that maybe she meant he only looked at two strains of XMRV? I don't know. She was quite upset by that study calling it all sorts of things but after that session they did get together and talk about it for awhile.
dipic
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Who initiated it? Who was standing up for the patients? Who was having accusations thrown at them with zero evidence? Who was being completely ignored by the other, side stepping questions, and not addressing valid issues raised? Who called in the pity party looking for sympathy because mean old patients and bloggers were hurting their feelings. Which of the two displayed arrogance, a huge ego and lack of compassion for patients? I could go on.
This is why I left your site long ago, Cort. Your bias is painfully obvious.
Boule de feu
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I'm surprised at your comment, Dipic.
I don't think Cort has a bias. Maybe, YOU do?
I don't think Cort has a bias. Maybe, YOU do?
dipic
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There are many who would disagree with you (just skim through the comments of this thread for a taste.)
Perhaps I do have small bias. It is hard to remain entirely objective, especially in manners such as this. Difference is, I'm not a journalist reporting coverage to anyone. Cort's bias toward XMRV and for the CAA is astonishingly blatant; I'm constantly surprised at those who do not see it.
Boule de feu
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No, I will not skim through the comments of this thread. I don't have the energy to do that. I have no time to waste.
Whatever agenda Cort has, it does not matter. I come here because I have an illness. I share the same symptoms
that others have. This forum is helping me to talk about it. It is helping me to find solutions.
This is what is important. Not what so and so says or what so and so believes.
When you are really sick with this disease, you are here to help others. You're not here to bash others.
This is my opinion, but again, it does not matter what I think, say or believe.
Sing
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It matters to me what you think and feel, Boule de feu. Thank you for your courage
in expressing your view--
in expressing your view--
Well said!
Wonko
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I agree, I dont have the energy for this BS ATM but also didnt have the resources to concisely object - thank you Boule de feu.
My feeling is that it is rude to jump onto this thread and without reading it through to make sweeping judgements about comments made by other posters.
If you can't be bothered or don't have the energy to bother, then stick to threads that you feel comfortable to tackle.
This attitude shows a rudeness to other posters who have read the comments, thought about it and wrote serious replies.
We don't all agree on the same things. Some people spent their precious energy here because they thought it was important enough to comment. They deserve respect.
If you can't be bothered or don't have the energy to bother, then stick to threads that you feel comfortable to tackle.
This attitude shows a rudeness to other posters who have read the comments, thought about it and wrote serious replies.
We don't all agree on the same things. Some people spent their precious energy here because they thought it was important enough to comment. They deserve respect.
Wonko
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I had read this thread and the other one on the same lines - am I entitled to comment now?
Wonko, you were applauding someone who said "No, I will not skim through the comments of this thread" - so maybe not the best choice for your own circumstances.
I'd love to read what you have to say with your own words and on the subject of this thread.
I'd love to read what you have to say with your own words and on the subject of this thread.
Rich,
Many thanks, as always, for your excellent summary of the NIH workshop, for your attendance there, your letter to Dr. Mangan,
and your responses to questions regarding the overall picture of this disease.
Your perspective, your voice, and your actions are invaluable.
Warm Regards,
~leela
Many thanks, as always, for your excellent summary of the NIH workshop, for your attendance there, your letter to Dr. Mangan,
and your responses to questions regarding the overall picture of this disease.
Your perspective, your voice, and your actions are invaluable.
Warm Regards,
~leela
Wonko
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so would I but it aint going to happen atm as i dont have the energy to re- read the 2 threads to pick up individual quotes and address them.
yes possibly Boule de feu should have read the thread, but i suspect the thread was at least heavily skimmed as the same undertone I found disturbing/upsetting seemed to have been picked up - and i was agreeing with Boule's general comments - I come here for info, peoples opinions on the info, and occasioanlly just to moan/discuss things - basically to keep in touch.
what i dont come here for is to see long running personal bullying style attacks on anyone who doesnt tow the party line - or who doesnt seem to in the opinion of some.
the NIH SOK has really brought home to me just how divergent some peoples opinions are from mine - to the extent I have serious doubts as to wether we were watching the same thing
e.g. brain scan guy - nasty all in your own head proponent - thats not what I got from his talk at all - I found his talk useful and very helpful - I think people misunderstand his use of the term percieved effort
coffin - experienced bloke, was theoretically on our side initially, he has a lot of experience and his gut feeling is that xmrv probably isnt it, he's not saying it's definately not it, he's simply saying that based on his intuition it probably isnt and possibly other things should be looked at - not scientific granted - but with his experience intuitions got to be worth something - not saying he's right, but he was there to give his input - he shouldnt be derided because of it.
muscle guy - again I found this talk to be interesting, not complete by any means but interesting and possibly useful - coupled with brain scan guys talk it explained a lot to me - but again people have been deriding him because they dont want to hear that maybe for a single movement/twitch their muscles are fine as that might suggest they had other issues to some.
it seems anyone who says anything antixmrv or that could suggest in a dumbed down version that the brain might play a part are being increasingly bullied and attacked on here.
as the least radicalised informative ME forum I am aware of this is not a good trend as far as I am concerned, as i said I dont come here for the BS (almost all the time) - I come here for information and a breakdown of that info so a thicko like me can understand it.
more than I intended to say - shoudl probably of kept my mouth shut - but there it is
Boule de feu
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My comment was too harsh, I know. I should have not been on the forum in the first place (I had just found out my mom will not make it through the week), this is probably why I was so emotional. You can also blame it on hormones and being too sick to even get out of bed.
However, I think Cort is doing a trememdous job for us on this forum. If there is one person we should respect, it's him (even though we don't agree with him, sometimes).
I'm sorry if I did hurt someone in the process. With a name like "Boule de feu", no one should be surprised that I will speak up when I don't like something. I will try to be less blunt, next time.
Boule de feu
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Who said I jumped onto this thread???
I said I would not skim through comments to figure out if others are thinking the same way our dear friend does. I did read everything.
I thought Rich's summary was great.
I also have an opinion on Coffin, but thought I would not say anything since I don't agree with what he is doing. I feel he has changed sides for no specific reason. Without proof of contamination, he should not go around telling everyone that we should stop the XMRV research. I don't agree that we should only research XMRV.
I also watched all the speakers' presentations.
I love what the Light team is doing, Montoya is also very convincing. What I understand from Natelson is that he did a big research but went ahead and did a smaller one after that.
I could go on.
You say I was rude to say what I said. Wasn't it rude to bash Cort the way it was done?
I'm sure that Cort could defend himself better than I do. He does not need me to do that.
I don't recall a single time when Cort needed to bash someone in order to make his point.
He is too much of a gentleman for that.
I should have kept my mouth shut. I will, next time.
No boule de feu, I am glad you spoke out. And wonko too. Although I am really interested in the XMRV research, I value this forum for the diversity of opinion here. That is why the threads posted here are fruitful and interesting, because people really do disagree, and we can argue from different points of view.
I do not like criticism of the people in the ME world who make the effort to do something to help others with this illness. It is very easy to criticise sitting on your backside (figure of speech, I know some would be glad to be able to sit on their bums) and I am tired of the continual almost paranoid criticism I read. It is almost a sickness in some, in fact I think it is due to the illness. It is very destructive.
And yet I agree with some of the political insights from the most paranoid - I think we have been appallingly abused and in many ways they are quite right to be so angry.
But I think they target the wrong people.
I do not like criticism of the people in the ME world who make the effort to do something to help others with this illness. It is very easy to criticise sitting on your backside (figure of speech, I know some would be glad to be able to sit on their bums) and I am tired of the continual almost paranoid criticism I read. It is almost a sickness in some, in fact I think it is due to the illness. It is very destructive.
And yet I agree with some of the political insights from the most paranoid - I think we have been appallingly abused and in many ways they are quite right to be so angry.
But I think they target the wrong people.