Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

You can view the page at http://www.forums.aboutmecfs.org/content.php?213-Four-Viruses-The-Alter-XMRV-Paper-Arrives

 

To: V99

Your negative posts have dragged on me all day. Tonight I was watching television with my husband and kept mentioning how awful the environment was. He suggested I write my feelings. So here they are:

I think that Cort hosts this forum and writes up these articles as a service to our community. You could take exception with some of his facts and reply in a non-aggressive manner to ask a question. But for some reason you don't do that. You put a lot of energy into negative statements.

We are all on the same team. Cort cares about this community. I think you could read the articles and explain logically where you differ. I don't understand the inflammatory language. Although I try, the truth is that I rarely understand the point that you are making.

But I hate slodging through your posts to see if there is any new news. There must be a better way to get what you need out of this forum.

I think Cort is doing a great job. He is open to criticism. Please stop slinging mud!

Lynn

 

While I don't agree necessarily with the language used in several of the posts, it is disturbing to note that no one questioned or sought to correct mistakes in Cort's paper until V99 spoke up. I also understand how difficult it is to write such an involved paper and I think Cort has done a terrific job. But V99 had the balls to speak up when half a dozen other people with the credential to do so did not. That is not how this site should be run. I also note that those people chose to attack V99 on an emotional level rather than debate the facts.

I visit this site for intelligent debate, not blind adherence to factional viewpoints and loyalties. If we can't get the facts right, who can. I come here first, for the real story. Cort, I've got to say, you are very patient when under fire. I respect that. But if the V99s of this world are not allowed to speak out, I fear this site will not be worth the visit.

 

Hi RustyJ,

I would like to agree with you. Debate and getting it ultimately right is the important thing. I am not a scientist. I just want to understand what is going on. Although i am sure that she had some good points, it seems to me that V99's way of questioning the article was fairly malicious. Why does it have to be that way? Did she think that Cort would not listen otherwise? Or does she really think he works for the other side? It is all very confusing. But the whole tone of this thread makes me want to never read it again. Alas, I really want to know what is going on. So I keep reading. I just wish it was a nicer read. we are one community after all!

Lynn

 

While I don't agree necessarily with the language used in several of the posts, it is disturbing to note that no one questioned or sought to correct mistakes in Cort's paper until V99 spoke up. I also understand how difficult it is to write such an involved paper and I think Cort has done a terrific job. But V99 had the balls to speak up when half a dozen other people with the credential to do so did not. That is not how this site should be run. I also note that those people chose to attack V99 on an emotional level rather than debate the facts.

I visit this site for intelligent debate, not blind adherence to factional viewpoints and loyalties. If we can't get the facts right, who can. I come here first, for the real story. Cort, I've got to say, you are very patient when under fire. I respect that. But if the V99s of this world are not allowed to speak out, I fear this site will not be worth the visit.

I doubt anyone is suggesting that V99 not be allowed to speak.

I, at least, am asking that she avoid personal attacks, pose civil questions, and provide constructive criticism. I also ask that if V99 wants to engage in civil discourse, she should listen as carefully and answer questions as directly as she expects others to.

Intelligent debate is one thing. Hostility is another. Does anyone here need to be "under fire" for us to have intelligent debate?

Maybe it's a case of you or me, Rusty, because you say "if the V99s of this world are not allowed to speak out, I fear this site will not be worth the visit" and I think if I have to listen to all this hostility and aggression, I won't find these forums worth the ugliness and negativity I have to wade through to get at the useful info. Guess we'll just have to see how it plays out.

 

But if the V99s of this world are not allowed to speak out, I fear this site will not be worth the visit.

Rusty, I have to strenuously disagree with your apparent assertion that some or even a single person here is trying to keep V99 from speaking out, or from sharing knowledge that may contradict Cort's or anybody else's writings. What I believe we're asking for is a little more civility. What I think is important for those who lash out in the way V99 has been doing, is to realize they eventually lose credibility; people just stop thinking they have anything worth saying.

I thought SickofCFS made an excellent point when she stated, """Much more damage is done to ME/CFS patients by the personal attacks (and attacks on other allies) that have appeared on these forums lately than was ever done by errors in a blog.""" My question is, "Why the personal attacks?" Why can't the V99s of this world approach a situation like this in a spirit of cooperation instead of confrontation?

I thought CBS made a good point when he wrote, """There has to be room for discussion and dialog and differing opinions without dragging out the accusations of using "tactics," intentionally lying, and comparisons to the "psych lobby."""

Why this is such a hard concept to understand????

Lynn, thanks for your posts. I can relate to your mentioning that you "rarely understand the point V99 is trying to say". Quite honestly, I don't either. I'm not a scientist, so I can't say whether there is validity in what she is trying to say or not. But V99 has lost so much credibility with me that I have my doubts it's even worth trying to decipher.

I think it's a shame people on this board have to slog through reams of negative posts just to see if there's a kernel of information in a thread that may be helpful. Unfortunately, many just quit coming. And it just doesn't have to be this way.

 

Lynn, sickofcfs, Wayne you just illustrated my point. Nothing you have just said has added anything new to the many comments against V99 already made. All they have done is further dilute any debate on the facts. (I am prepared to accept my 2 posts may also not contribute much) Sure the debate between Cort and V99 had deteriorated, but the facts needed to be clarified and I am quite sure Cort has the temperament to handle such a situation. He usually does. Posters coming in on either side without any factual contribution only inflame the situation - and be assured, many did. Those under attack see themselves as besieged - alone against the majority.

To illustrate further using a sports analogy. In rugby league (Australian football) referees usually penalise more heavily those that come into a fray after an initial punch is made, simply because it is the worse transgression, because it is only then that things get out of control.

 

People come here for information

And me. Please stop posting these aggressive attacks on Cort.

People come here to read his reporting, not your self-important posturing.

If you want to contribute to the debate, there's no reason why you can't do so in a respectful and objective manner.

If the facts are incorrect I'm glad someone is pointing it out so misinformation is not spread. Correcting misinformation is not disrespectful.

If I post something that is incorrect and it is read by many others for information I would hope someone would correct me. Wouldn't you?

Misinformation can spread quickly just as the info on the Science paper cohort or lack thereof did.

 

All they have done is further dilute any debate on the facts.

I would say it's the way the "V99s of this world" post that dilutes the debate, NOT the people who say they would like to see a more civil tone.

Yes, I'm quite sure Cort can take care of himself. But there's a lot of people who are affected by the needless negativity. Some of us finally decided to speak out using some pretty diplomatic language. If it's OK for the V99s to speak out, why not us?

 

Thank you Cort for all that you do. i appreciate you so very much.

glen

 

Correcting misinformation is not disrespectful.

I respectfully disagree. Correcting misinformation can be respectful or disrespectful depending on how it is done.

I don't think anyone is ever persuaded by inflammatory rhetoric. It just turns the debate into partisan point scoring which is neither informative nor useful.

There are a set of skills required to perform scientific or logical analysis of a problem. There are another set of skills required to communicate or persuade people. These two sets of skills need to come together for good, intelligent analysis to be propagated.

 

Correcting misinformation is not disrespectful.

If I post something that is incorrect and it is read by many others for information I would hope someone would correct me. Wouldn't you?

Hi Bakercape,

I agree, correcting misinformation is not disrespectful. And yes, I also would hope someone would correct me if I put out inaccurate information. The way I see it, that is not the point of what we've been discussing.

What I, and I believe others are saying, is that correcting information should ideally be done in a friendly and respectful manner. And we don't feel that's been the case in the way V99 has chosen to post on this thread.

I personally don't understand why correcting information can't be done in a spirit of cooperation instead of confrontation. Doing so would make a thread far more readable and far more valuable. Why post in a way that many here are saying takes away from the value of a thread?

 

I would say it's the way the "V99s of this world" post that dilutes the debate, NOT the people who say they would like to see a more civil tone.

Yes, I'm quite sure Cort can take care of himself. But there's a lot of people who are affected by the needless negativity. Some of us finally decided to speak out using some pretty diplomatic language. If it's OK for the V99s to speak out, why not us?

Hi Wayne. I also find V99's approach uncomfortable sometimes. I thought I made that clear. Of course this site is about speaking out. However in this case V99 was trying to clarify facts of the debate that had been ignored (irrespective of her manner). Many other posters were just speaking out without trying to establish facts.

In my view some posters objected, not just to her manner, but her temerity in questioning Cort's paper.

Let's get back to clarifying facts. For example, why is the title of this significant article, "Four Viruses...."? Why not name it "One Virus..."?

I ask this because:

• The variance between the MLV-related viruses are less than variances within a single strain of HIV
• The variances are normal and to be expected for a retrovirus

Not such a big issue, you ask. Consider this:

• The headline makes a gigantic statement and colours the tenor of the rest of the article
• Cort's articles are picked up by bloggers and other websites (because they are usually comprehensive and up-to-date)
• WPI detractors are using this confusion to isolate the institute
• Many CFS antagonists are using this confusion to water down both papers
• Many respectable media outlets are perpetuating the same line of reasoning
• WPI needs every ounce of support we can give them
• There has been the perception of an anti-WPI bias even on this site. This being the case and together with some of the above points, we need to bend over backwards to ensure this perception is erased.

With great power comes great responsibility.

 

Please explain what possible motivation a man who suffers from CFS like the rest of us

Are you sure about this, Recovery Soon? All I have read is Cort saying he has recovered his health using LP and Amygdala training. Why? Ielieve it it is to further his own personal interests, including protecting his sworn ally, CFIDS Assn of America, from being deposed as King of the Hill among the community of people with CFS and to ensure the income of his buddies who are employed by the CFIDS Assn of America. What income does Cort make from his "advocacy" for people with CFS? Ask real questions and you might get real answers.

 

What income does Cort make from his "advocacy" for people with CFS?

Probably next to nothing.

 

Are you sure about this, Recovery Soon? All I have read is Cort saying he has recovered his health using LP and Amygdala training. Why? Ielieve it it is to further his own personal interests, including protecting his sworn ally, CFIDS Assn of America, from being deposed as King of the Hill among the community of people with CFS and to ensure the income of his buddies who are employed by the CFIDS Assn of America. What income does Cort make from his "advocacy" for people with CFS? Ask real questions and you might get real answers.

GHK, while I don't know enough to comment on most of your statements, you only have to take a good look at the site to see the hours, energy and heart Cort has put into it. There are plenty of easier ways to make dollar.

 

Are you sure about this, Recovery Soon? All I have read is Cort saying he has recovered his health using LP and Amygdala training. Why? Ielieve it it is to further his own personal interests, including protecting his sworn ally, CFIDS Assn of America, from being deposed as King of the Hill among the community of people with CFS and to ensure the income of his buddies who are employed by the CFIDS Assn of America. What income does Cort make from his "advocacy" for people with CFS? Ask real questions and you might get real answers.

Okay, even though it's off topic, I'll ask a real question:

Where have you read that Cort has said he has recovered his health using LP and Amygdala training?

I'd appreciate a real answer. Please post a specific link to back up your statement.

Thank you.

 

It is precisely because the blog is negative that I have spoken out:

It’s possible but hardly likely that both findings are correct. If retroviruses are usually found in’ swarms’ even within the same person’s body then it seems more likely that both groups are missing part of the swarm. Dr. Alter reported, in fact, that WPI researchers were finding more variation over time.

Myra McClure says the same thing, that it's different. If this were a real issue Milovits would not now be co-charing the international conference. It is negative speculation and misinterpretation. And it is what the psych lobby do. I can't change that but I know a man who can.

We are meant to be happy after the Alter paper it's great news. Alter tells us it confirms Lombardi et al. He says the WPI study was better. (Ed- insulting comment removed)

 

Thank you Rusty

Rusty, I want to thank you for capturing exactly how I feel (your posts #172,174)

Big brother IS watching
A sign of the success of various ME/CFS forums is that they are being visited and indeed cited widely. Alan Dove and Dr Singh are just two examples. Similarly, this patient community IS being listened to - one just has to read Dr Alter's comments on the decision to publish earlier rather than later (i.e. before finding proof of viral integration), to get the sense that he realizes this community is in dire need of robust biomedical research.

If this community can't get facts right, who will?
As this forum grows, I would echo Rusty's sentiment that the burden of responsibility for accuracy increases on ALL forums. Does that mean that articles should be pristine at first posting? Absolutely not, and correction of facts has nothing to do with whether we appreciate the article in the first place. However when factual errors are pointed out, I would hope there is more of a thirst for being right, than for being perceived to be right.

Many of us are in awe of Cort's prodigious output, particularly within the context of an ME/CFS diagnosis. However many of us have also experienced significant difficulty in effecting change matter-of-factly when the facts have strayed, and simply don't have the health and energy during relapses to slog through inordinate resistance and escalating invective. The reality is that this forum has a long history of skirmishes - often related to perceived bias, and incorrect facts. These skirmishes often escalate - rather than being systematically and matter-of-factly nipped in the bud by correcting factual inconsistencies. It's just the culture of this place. For all the effort Cort sometimes invests in refuting valid concerns, he could "just do it". I submit that when clear-cut errors are matter-of-factly acknowledged and corrected, this forum is a better place for it.

As the science on XMRV and MLV's explodes, it will be increasingly in our community's best interests for the various ME/CFS forums to be "go-to" sites, where information is indeed factual. And the forums which demonstrate nimbleness in addressing the occasional error will benefit in terms of credibility.

No one wants to be mired in conflict. Surely there must be a middle road between loyalty to the forum host, and sufficient humility to encourage continuous improvement. If forums like this can't address factual errors, why expect the media to do so?

How can we help Cort make this a better forum?
Now for the practical considerations: Cort, HOW do you want people to bring up factual errors? Would it be helpful if people took the time to rewrite a contested segment? Or do you just want a succinct bullet list detailing the error that you can wordsmith? Do you want the first comments through PM's? Will you respond to them? What are some tangible ways that members can make it easier for you to be willing to address errors? What are some tangible ways that we can make it easier for you to incorporate edits when factual errors are identified? Would it be helpful to have a "how you can help me" segment in Nuts and Bolts? Other than the obvious issue of addressing tone on both sides, is there something that would make this process of continuous improvement happen more swiftly and easily, so that seriously ill patients giving feedback aren't also burned out by the process?

Bottom line, the issue of how - or whether - factual errors are acknowledged and corrected is not something that is likely to disappear. Until Cort and the forum come to some understanding of "what works", and how best to do this, we will just keep spinning wheels.

Any other constructive ideas on how to move this beast forward?

 

Are you sure about this, Recovery Soon? All I have read is Cort saying he has recovered his health using LP and Amygdala training. Why? Ielieve it it is to further his own personal interests, including protecting his sworn ally, CFIDS Assn of America, from being deposed as King of the Hill among the community of people with CFS and to ensure the income of his buddies who are employed by the CFIDS Assn of America. What income does Cort make from his "advocacy" for people with CFS? Ask real questions and you might get real answers.

Sounds pretty slanderous to me. And ill-informed besides.

 

With great power comes great responsibility.... another quote "To Whom Much is Given, Much is Required"... ... same idea.

This is absolutely true. Best to get your facts straight. If in doubt, have others fact check for you.

Too many lives are at stake to fail to check facts. To many have already suffered too much.