Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 10, 2011.
Yes please do Asleep - your posts on this thread have been awesome!
Nina I am clear about what I heard. After talking to him I went back to my seat clear about where he was at.
I can understand the confusion...You heard Dr. Alter speaking as the moderator of that session. (At one point he did say that personally he thought Dr. Coffin's theory was very strong or something of that nature - a point that Amy Marcus noted as well.) He was more forthcoming about his personal take on everything in person...
He also said I'm a virologist - not a retrovirologist and that what he was really waiting for was the Lipkin and BWG studies and that they will tell the tale.
If you take Dr. Alter's questions about the genetic variability and then his concern the prostate cell passage through the nude mice - then my summation makes sense. That doesn't mean that there also aren't also questions about why no contamination has been found in either lab.
Can I ask you where I have said "I know something but I can't tell you?". I don't think I've been saying that. I've been saying that I didn't have my recorder on - not that I'm holding things back...(Right now, I think I probably should have held some things back
I agree I have a large responsibility to get this right
Thank you for taking the time and energy to report on this conference for us. I found your summary to be very useful, as always.
What scares researchers away is not the patient community, but rather the very UGLY POLITICS of this disease.
Have a look for yourself, if you dare to be so brave.
You must realize that many of the posters that are being negative and rude have come from the mecfsforums where it was posted that people should come to Phoenix Rising and purposefully stir things up. Just ignore them KFG.
Is it time for another request to moderators that we need more enforcement of the rules to address those who come here to trash and bash? I, for one, am (again) fed up with the bullying that's allowed to go on around here.
My impression has been that the arguing here is hard, but its purpose isn't hateful. My impression is that people are doing their best to aim for what they see as true. But I am hoping that people will make the effort to be more polite in how they put things and I hope nobody leaves. We matter--not just the science.
Fellow patients are concerned for fellow patients.
When information is presented as fact as was the case in the article Cort authored, it is important that facts are reported accurately. Opinions or personally thoughts should be stated as such and not interspersed with facts. There were errors that really needed to be addressed.
Often times, videos and transcripts are available to validate or invalidate statements. In the case of the NIH SOK, many patients watched real-time while many others watched the videos later. When and if there was a question of something that was said, one could review the video. People have discussed about what occurred online in many ME/CFS forums.
I hope PR continues to present valid information to members. What is presented as fact can be validated and personal opinions or observations are communicated as such.
Correcting facts -- with appropriate references, not personal opinions -- and personal attacks are two very different things.
I'm all for correcting factual errors, but I'm completely fed up with personal attacks and bullying.
What I took from what Dr. Alter said was that he thought both sides of the argument were compelling. He was not saying that he was on one side of the argument or the other. He was reserving judgment until the future studies were done (the BWG and Lipkin studies).
That was my take on Alter's position as well, Mya.
I am posting a new thread with a transcription of Alter's wrap up on Coffin and Mikovits's presentations in this Articles on the Front Page forum.
That's how I understood what he was saying also. From his statements at Demistifying Medicine he fealt his work and Lo's was partially confirmatory and contamination was rigorously controlled for by himself and Lo.
Alter saying Coffin's work is compelling does not equal Alter leaning towards XMRV being a contaminant. He seems to feel the WPI's work is compelling also.
+1 thanks Cort.
That was my interpretation too omegaman
KFG, after re-reading my post, I apologize for being excessively snarky and abrasive. However, I do stand by the essence of my analysis.
The main points I was trying to make (sans snarkiness):
Reputation, Credentials, Esteem
Quality of past work does not guarantee quality of current work. Appealing to a scientist's reputation or publication credentials amounts to essentially ignoring this fact. Each study must stand on it's own merits, regardless of who conducts it.
Furthermore, in the face of strong evidence that some current research is flawed, appealing to credentials has the appearance of trying to distract from said flaws. This is a disservice to anyone with an interest in the truth.
Everyone wants quality researchers in this field, so long as they continue to do quality research. Conversely, an influx of esteemed researchers conducting flawed, politicized science can be worse than no research at all. Would anyone accept a blanket justification of Wessely's research on the grounds that he is "well respected" in the UK? Of course not.
Labeling certain lines of questioning or discussion as "conspiracy" is a way of artificially constricting the bounds of thought. It is a highly charged phrase packed with far more connotation than meaning. Given the strong human desire to maintain social status, use of "conspiracy" has a chilling effect on discussion and is a powerful way to reign people back into line with mainstream, conventional thinking.
As such, using the word "conspiracy" (or similarly charged phrases) outside of a very literal sense is almost always a form of emotional bullying. There is no reason not to be concrete in one's criticisms: e.g. pointing out speculation on people's intentions; pointing out insufficient evidence; etc.
I understand the concern of the patient community being branded "crazy." However, we must reject these terms as they were not set by us and lead only to a lose-lose situation if the correct questions are successfully painted as "conspiracy." Honest people will follow logic and evidence wherever it takes them.
Correct cohorts are essential. They are necessary for quality research, but they are not sufficient.
The problem with portraying them as the elephant in the room is that doing so sets up a situation in which other very powerful factors can be overlooked or dismissed. A study with the perfect cohort can still be deeply flawed. It could use flawed methodology or (as in Coffin's recombination study) not even make use of a cohort. To view cohorts as the only elephant is to run the risk of lending false credence to studies that get the cohort aspect correct but other aspects woefully wrong.
Another issue I take with the focus on cohorts is that the cohort issue strikes me as "the free speech zone" of ME/CFS research criticism. It is the politically sanctioned steam valve for research criticism, a way for people to voice criticism (even "manipulation" as KFG suggested) that is virtually guaranteed to be innocuous. Reputations and interests can far more easily be rescued from bad cohort criticisms (by claiming "cohorts are confusing" or "CFS is a wastebasket" or the old catch-22 "there are no diagnostic criteria") than from criticisms about methodology, conclusions, or outcome-driven research (e.g. setting out to dis-prove XMRV one way or another).
Lastly, there seems to be a very strong double-standard on this forum:
Emotional bullying => acceptable
Calling out emotional bullying => bullying
Patronizing remarks like "wise up" or "give me a break" meant to steer people back into line => acceptable
Exact mirroring of these phrases in response => bullying, bashing, personal attack
Criticizing Dr. Mikovits and the WPI for behavioral reasons ("she acted too emotional") => always acceptable, if not sanctioned
Criticizing Dr. Coffin, Dr. McClure, Dr. Towers, etc for flawed research and politicized actions => trashing esteemed researchers
Criticizing Dr. DeMeirleir for publicizing unpublished research => acceptable
Criticizing Dr. Coffin for the exact same thing => unconscionable
Threatening unpleasant outcomes ("keep it up, see where it gets us") and lawsuits (Ecoclimber) => acceptable
Pointing out logical flaws in people's opinions => grounds for moderation
Reporting unsubstantiated "facts" based on fuzzy memories => acceptable and praised
Questioning these "facts" => making personal attacks
Asleep, let's break this down a little. You have a problem with double standards regarding criticizing people and bashing people. Have you ever criticized somebody and bashed them. I think you have.
Hmm, let's see I found this on another forum written by you.
Talk about double standards. You are doing what you accuse others of. If you think Cort is guilty of what you think he is as evidenced by your statements, why do you bother with this forum at all? Just saying.
So are we all to forget what we heard Alter say with our own ears at the SOK conference and take one person's word that he actually meant something else?
I ask again. What is the big deal if XMRV is found to be a cause of CFS? Why do some react so vehemently at the very mention of it? A retrovirus fits the symptoms of ME/CFS quite well. Even Coffin thinks it could be a retrovirus.
I don't see others acting so strongly when a herpes virus or enterovirus is mentioned as a possible cause. What's the difference?
Cort, I know this is your forum and I take a risk saying this. I really thought you would come back on after others showed evidence of Alter's opinion stated publicly at SOK and say that maybe you heard wrong or we will just have to wait and see because you had no real proof of what Alter said to you. I was shocked to see you as adamant as ever that you were right, period. That is your opinion only.
Please, please take your recorder with you to the next conference and turn it on so we can have the exact words.
Firstly, thank you, I do occasionally tell sweet jokes.
Secondly, I think you are mincing ideas. I pointed out a double-standard in how this forum encourages criticism that makes use of different criteria and standards depending upon who the recipient is. In my case, the criteria and standards that result in my criticizing/bashing Cort, Coffin, etc are the same criteria and standards that result in my not criticizing/bashing Mikovits, WPI, etc: namely, adherence to logic, facts, and the scientific method.
Furthermore, I don't believe I've ever made a case against the act of criticizing/bashing itself. Therefore, I don't see how I'm being inconsistent by engaging in the act itself, so long as I do so with consistent standards (which I believe I do).
Lastly, the reason I bother with this forum is because false information is dangerous. Many people come here to find out what is going on with XMRV research, and misleading information threatens to undermine patient support. I suffer no delusions that XMRV research is being given a fair shake (which is all I want), and I do my best to expose that delusion to others.
Believe me I will!
I want to repeat that what I heard is not what you heard because it was based on a personal conversation with Dr. Alter. I would note, though, that the only time I believe he expressed his personal feelings about the state of things while he was moderating was when he said that 'personally' he felt Coffin's data was very compelling and the next step was to clear up the contamination issue. That only happened once that I know and it's easy to miss but that was in line with what I heard him say during our conversation and it was what Amy Marcus reported.
I know I reported more than Amy did but everything I reported logically follows from that statement...If he personally believes that Coffin is correct then what I wrote makes sense. I also reported that, on the other hand, that he doesn't know why his or the WPI's data does not show contamination...As I wrote all the pieces do not fit together.
asleep -- if you think saying what you said is a sweet joke, I feel sorry for you. You were engaging in bashing Cort and that's the sweet truth. I have scoured different forums trying to find an answer. There are those who exist in the realm of the research is over, XMRV causes ME/CFS, game over and anybody who believes anything else is deluded and a TROLL. There are forums that have a more balanced view, looking at the studies critically, open to possibilities, looking for replication. Historically, I have not agreed with some things Cort has said, but in this particular instance I think the issue of XMRV is treated well on this forum. People obviously have different opinions and that's all they are -- OPINIONS. Realistically, the research will show the truth about XMRV and it's role in ME/CFS. People can say what they want but it won't change the findings of research studies.
You can also try a Google Site Search
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