Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jun 3, 2011.
What do you think?
Hi leaves - I was going to do the poll but found that there wasn't a response that fitted my view, which is that I don't know (not the same as having no opinion and not the same as doubtful - which to me implies moderately negative).
I think that to allow people the options they need, you maybe need a scale that goes strong positive, moderate positive, neutral, moderate negative, strong negative. I read this scale as strong positive, moderate negative, strong negative, abstain.
Sorry to be picky! But I think it's an interesting question, to take the "opinion temperature" at this point. Another way you could do it is +5 = certain about XMRV, 0= neutral and -5 = certain XMRV isn't it, and let people check any option in the range -5 to +5.
Hi Sasha, that is a good idea, but I dont think I can change this poll now, as people have already voted.
let's agree that if 1 is no believe in xmrv at all, and 6 is certain, that option 1 is 5-6, option 2 is 2-4 sure and option 3 is 1-2, would that work?
Hi leaves - sorry, didn't realise people had already voted, probably best to leave as it is, then - probably people will vote before reading an instruction so best to take it at face value, I think. So far people are being very binary about it (strong positive vs strong negative) and if that continues it's a reasonable assumption that the ratio will roughly represent the ratio of positive to negative opinion (ish).
Hi leaves, I have not voted as my position is between one and two. I think it is not just possible but probable, but with substantial doubts. It is however not overwhelmingly probable, so I cannot vote for option one. In particular I think there are major doubts about causation, and moderate doubts about association. I also think that there are major doubts about contamination theories. The problem is, once you consider contamination improbable as I do, there are no other explanations that have been put forward that explain the data other than WPI is right, and the other researchers can't find XMRV. I am not happy with that explanation either - I guess I am in a more wait and see camp, eagerly awaiting the BWG and Lipkin studies, and both dreading and hoping WPI is right (for different reasons). We need to know, so if the question were "should WPI continue to research XMRV" then my answer would be "definitely". Bye, Alex
The poll options are wrong Leaves and insulting to this this forum.
Patients are not "believing in XMRV" we are waiting for the science to continue to find out.
Nothing has happened to bring the science forward since the original paper with the possible link to CFS. Lots more work needs to be done and few researchers are doing it.
You need more options here. The poll plays into the patient hating propaganda that we are all stupid dupes and incapable of making rational decisions and incapable of thinking this through in a rational way.
I don't see it that way, ukxmrv - I read "do you believe inXMRV as a factor in CFS" as the same as "do you consider XMRV to be a factor in CFS given our current state of knowledge". I know sometimes people use "believe in" in the sense of "do you believe in fairies" but people often use it as "it's my belief that England will win the World Cup" to express an opinion on the balance of the evidence.
Sasha, where's the option between "for sure" and "doubtful, but possible" then? The options are still insulting regardless of what you personally "believe".
Remember this forum is visible to outsiders and it needs to be worded carefully. The use of "believe" falls right into the Alan Dove view of patients and needs to be changed. It's just not good enough to word things ambiguously and leave us open to ridicule.
im sorry ukxmrv I didnt meant to insult, i honestly just want to know whether people think xmrv is a factor in cfs. As english is not my native language I probably messed up, im sorry! Hope you are doing ok.
If people are not happy with this poll, please delete it (mod??) and do an improved version!
I believe in XMRV (as in I believe in the original WPI study). It's indeed an opinion, based on the current evidence.
Also, need a bumper sticker for that.
No worries Leaves and thank you for the kind reply.
I don't want to see Trine or Alan Dove laughing about us and this poll. Maybe just create a new one with slightly different wording.
My guess is that you want to know if patients think that anything has changed since the original Science paper to make it invalid in some way?
I think it's unlikely XMRV is related to CFS, but I'm not certain.
It's a difficult thing to phrase a poll about: 'believe in XMRV' sounds like it includes 'as a human pathogen unrelated to CFS, not just a laboratory contaminant', so we could all be interpreting the questions differently. It does seem like many now think that XMRV was just a big mistake for CFS and PC. It will be interesting to hear if Silverman still 'believes' in XMRV.
I dont want that either. Can you give suggestions how to improve the options? Do you agree with Sasha's suggestion in her earlier post? Then we will ask the mods to delete this one and do a new poll instead. Also, could you please dictate the wording cause your a native speaker.
My suggestion for phrasing:
How likely do you think it is the the results from the WPI's XMRV paper in Science will still be validated?:
I'm not sure you you edit/delete this poll. I wouldn't worry too much about it though - anyone trying to make CFS patients look bad by using a self-selecting poll on an internet forum is a quack who is not worth worrying about. Ta.
The problem with that (and huge thanks Esther!) is that the Science paper may never be "validated" if there is never a genuine replication attempt.
Maybe something like
"do you think that the WPI Science paper is still as valid as before" (I'm thinking of the people who never thought it was valid as well)
I'll leave it up to others for more ideas as my brain has gone on a "go slow".
Hi Jemal, my personal position would not see me with such a sticker, but I might go for "I believe in WPI". We have needed a dedicated institute for a very long time. Of course, if Lipkin supports WPI after the study is done, I might want that sticker after all. The original Lombardi et. al. study blew my ugg boots off - I was very impressed. Bye, Alex
I haven't voted as there isn't an option to express my opinion--which much like Alex's. I'd vote for starting a new poll and scrapping this one as, even though a number of people have voted, I don't think you are going to get a true representation of opinion as many, like myself, will refrain from voting due to the wording of the options.
Good idea to have a poll though!
You can also try a Google Site Search
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