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

 

How about you try backing off and letting him answer?

This situation isn't just about you and Cort, or just you and Recovery Soon. It's about you and "a posse of attack characters" (your words). It's about you and "all you people who are attacking me" (again your words).

The reason I feel I have a right to weigh in (diplomatically IMHO) is because this affects me and everybody else who comes to this thread. It is not at all constructive and I can see nothing to be gained from furthering this stressful dialogue.

It seems you're feeling "under seige", if I may use that term. Why would you want to stay in an environment where you feel you are being attacked by "all you people"? It seems clear you and this forum are simply not a good fit. Again, why not just move on?

 

1. I am still waiting for a response from Cort. All of these other comments just add to the pile-on and serve no purpose because they clarify nothing.

2. I am still promoting an important advocacy project that I have noticed that none of you energetic, enthusiastic attackers have offered the least bit of help with. You could, if you wished, put your energy to more productive use than this. I would like to say that while clearly Dolphin and I do not agree on the sexism issue, I have enormous respect for him as someone who is working very hard doing wonderful things for our community. I welcome all of you to join the effort.

 

Please refrain from asking awol to leave, this causes more contention and I'm sure must be against forum rules. If only I could find them!!

 

Thanks so much Cort!

I'm trying to keep updated the Spanish forum I run on CFS (http://www.sfc-em-investigacion.com/index.php), and this summary has been extremely useful to understand the controversy about the role of the retroviruses on CFS, and therefore to answer some doubts many Spanish patients have, who unfortunately don't manage with English.

Best!,
Sergio

 

Cort,

Two quick questions to sort out any misintepretation and confusion when reading your posts:

a) Why do you refer to your blog article as a "paper"? When I read your comments on your own blog commenting on the scientific papers of Lombardi or Alter/Lo, its quite confusing. Its not common to call a blog post/article for a "paper".

b) Its been a verbal fight going on. People are getting distressed. Thats not good. You try to solve this by using dictatorship. What makes you think this is a smart way of solving a situation like this?

- Funkster

PS! Please change the title of the blog post - its just not common sense to call this different viruses. Unless you would like to educate the scientific community that HIV 1 and HIV 2 are different viruses.

 

Hi Cort,

I have noticed you have made several important improvements to this article and thank-you for that. I am still in agreement with others here, clearly that the title is misleading, but the rest is looking much better.

regarding this bit:

The editors of PNAS, however, wanted the Alter/Lo group to show evidence that the MLV’s they found were integrated into the human genome - that is, that the virus had inserted itself into a cell’s DNA. Because a contaminant is not a virus - it’s a genetic sequence from a virus - it could not actually infect a cell. (The WPI went so far as to show that the XMRV they found was able to transfer itself from one cell to the other.). The Alter/Lo group did not do that, citing the difficulty of having to wade through from hundreds to 1,000’s of cells in order to find the one infected with MLV’s.

It has been pointed out to me by someone who understands these things well that the request to look for this was in some ways redundant (they proved not contamination in other ways, AND the WPI had already done this) and in some ways also extremely problematic. This is because, if the paper HAD proven integration into the genome, they would have been open to an entirely new line of criticism and doubt, based on the theory that this virus, if in the genome, might be endogenous rather than infectious and exogenous.

Though clearly this new line of questioning would have been just as misguided as the residual doubt on contamination, it would still have been present. There are many who just do not want to believe, and have reasons for finding any reason not to. Alter was therefore very very smart to use new patient samples 15 years later and show they had mutated rather than wasting months showing genome integration.

 

PS! Please change the title of the blog post - its just not common sense to call this different viruses. Unless you would like to educate the scientific community that HIV 1 and HIV 2 are different viruses.

Are you a virologist, retrovirologist, immunologist, microbiologist, or one of the authors of the study? The problem is that very little is known about ME/CFS and a lay person cannot accurately label and categorize what XMRV/MLV's are at this point. Authors of the 2 positive studies have used "viruses, strains, types, and variants" to describe them. We now know that there are 2 species or types of HIV: HIV-1 and HIV-2 that both cause AIDS. In fact HIV-2 is more closely related to SIV than it is to HIV-1 brining in a similar complexity of the X or P argument of classifying MLV's. And we now know there are 5 hepatitis viruses, A-E. All this classification took alot of time. So, we should all wait for the experts to figure out the classification of XMRV/MLV's as it pertains to ME/CFS. Feverntly arguing about it obsessively to the point of horrible personal attacks on a patient forum is very exhausting, disgusting and moot. Clearly some of you have OTHER problems and sadly Cort is being attacked for them. Shame on you!

The big picture here is that retroviruseS have been found in people with CFS/ME whether that's called CAV, XMRV and/or MLVrv's will be further verified, clarified and categorized by the authors and medical experts not by patients with a chip on their shoulder. Can we all enjoy what we have learned SO FAR from the 2 positive studies instead of ATTACKING the hell out of Cort for no good reason? If you feel an itch to attack someone named Cort, please leave this forum asap and quickly go on the attack at Weasel, McClure, White, Reeves, Erv, UK/NICE/GET/CBT, ect.

Ok, now think good thoughts! Take care.

 

V99 is no longer a member of this Forum. I'm sure some people will be upset with that but it just got to be too much. It was my decision alone.

I have had numerous people complain about her style of posting and several people have intimated they will longer participate on the Forums if its going to be like this. ...

If you would like to know what 'rules' she broke - the best would probably be something about engaging in behavior so disruptive to the peace of the Forums that I felt she was damaging them and creating the kind of environment that I (and others) do not want here.

I take complete responsibility for this - it was my decision alone.

Thank you, Cort. I have become increasingly disturbed by the tone of "discussion" in the supposedly supportive forums. I admire your dedication to continue this site in the face of the weirdly hostile stuff that people keep flinging at you. Of course we all get emotional about this illness that has destroyed our lives, but with perspective we can avoid adding to the damage. I, for one, would be in favor of moderators filtering out any posts that are personal attacks or attribute negative motives to other members. Commenting on or asking questions about factual information is one thing, but implying someone said something a certain way because they are "pro" or "con" a certain view is way too much like today's politics!

I would think that each of us wishes the best to every member of the forum, that we all in our hearts hope that everyone of us can get better and resume living life in full. With that in mind when posting, perhaps we can consider the effect of our postings on other CFS/ME afflicted readers just like us. When I see CFS/ME sufferers attacking each other, I feel worse. May I suggest that even if a person feels slighted by something someone said, that it would be helpful to consider thinking twice before amplifying the effect by replying in kind?

Thanks for "listening"
Aloha to all!
:sleepy:

 

So, we should all wait for the experts to figure out the classification of XMRV/MLV's as it pertains to ME/CFS.

Exactly. It is too early. That is why it is problematic to use the title that Cort chose to use, and it is valid for Funkster to point this out. I see no personal attack on Cort in what Funkster has said.

 

Exactly. It is too early. That is why it is problematic to use the title that Cort chose to use, and it is valid for Funkster to point this out. I see no personal attack on Cort in what Funkster has said.

So Cort should not use any titles on HIS article or only those that you approve of? GTHO!!! Write your own article and name it whatever you like! OMG how narcissistic are you?


( Ed - curse word! ) pointed out nothing and called Cort a dictator!

 

2. I am still promoting an important advocacy project that I have noticed that none of you energetic, enthusiastic attackers have offered the least bit of help with. You could, if you wished, put your energy to more productive use than this. I would like to say that while clearly Dolphin and I do not agree on the sexism issue, I have enormous respect for him as someone who is working very hard doing wonderful things for our community. I welcome all of you to join the effort.

Thank you for your kind words.

There are many capable people on the forums. Hopefully some of that energy can be used to challenge misinformation and the like. Project ENOUGH! seems to have a good focus although action does not need to happen through it. For example, people may be able to write a letter themselves.
Sam Carter had a letter published in the BMJ this year.

 

Thank you for your kind words.

There are many capable people on the forums. Hopefully some of that energy can be used to challenge misinformation and the like. Project ENOUGH! seems to have a good focus although action does not need to happen through it. For example, people may be able to write a letter themselves.
Sam Carter had a letter published in the BMJ this year.

I am glad to hear this. Thank-you for publishing that letter Sam Carter.

 

Wayne, it is posts like this that create the clash. And false accusations about what people have said in trying to make their points. If all of you people who seem to want to do nothing except attack me for articulating some criticisms with Cort would just back off and let me discuss things in a civil manner with him, these situations would not happen.

The pile-on after Dolphin's mostly well-meaning and well articulated criticism (except for that McCarthyism bit) of what I said was caused by a posse of attack characters, not me.

Banning V99 is your loss. Actually dealing with the information and criticisms she put forward would have been the mature approach.

Amazing- you still don't get it.

awol, you and this forum are not a good fit. It doesn't work for you, and it doesn't work for us. Why not just move on, for everybody's sake?

This seems to be a common request. I don't support it yet. I still think there's the opportunity to stop fighting this losing battle. People clearly understand your words, and don't need to be explained what they mean. Your endless justifications are wasting people's time. You seem like a smart person. But you are expending great energy trying to argue you're way out a corner you painted yourself into. IT'S OVER.

Tell me what was the least bit civil and considered about what Recovery Soon said and then ask yourself why he is not the one being invited to leave.

Nice Deflection- Let's go back to the prior point. IT'S OVER. You're spinning your wheels. The tireless justifications, explanations, characterizations, supposed misrepresentations of your words are GRATING ON PEOPLE.

IN the words of Dr, Phil- How's that workin' for ya?

 

Please refrain from asking awol to leave, this causes more contention and I'm sure must be against forum rules. If only I could find them!!

Thank-you busybee

 

Originally Posted by busybee
Please refrain from asking awol to leave, this causes more contention and I'm sure must be against forum rules. If only I could find them!!

Ditto. I don't know why we are still talking about this.

Lynn

 

I agree - some people have registered their upset at some of AWOL's posts - that's been done and please let's not escalate the situation. Im my opinion AWOL posts, at times, do push the boundaries and do not always maintain the kind of 'tone' desired on the Forums. Perhaps another moderator would have said enough but in my opinion it hasn't been. She/he is engaged in an laudable effort with the ENOUGH campaign.

Attacking someone is a sure way, on the other hand, to push them into a position where egregious posts occur. I request we back down from the brink. If you have a problem with AWOL's posts please post them in a polite manner.

Its clear that it doesn't work to allow someone, in the spirit of trying to be inclusive and in the desire to give everyone access to the Forums, to go on and on until disruptions like this occur. I received quite a few heartfelt emails about how hurtful this thread got and my job is to not allow that to happen again. One way I can to tell when things are going off the rails for someone - when they have become, for whatever reason, too heated is when otherwise evenhanded posters - people who have maintained themselves in an admirable fashion over time - start getting 'pissy' around problematic members.

In any case - shrill, negative, divisive posts that attribute ulterior motives to Forum members are out (and always have been). Posts that dig into whether interpretations and ideas are correct and ask for change in a polite way are very welcome.

Its obviously a fine line but if your posts focus on the facts and there is a heated discussion about the facts then that's fine.

 

I've only skimmed this thread. I got the gist, though.

I want to say that as a professional science writer, all my pieces are fact checked by independent fact checkers. Any good "lay" science magazine has a fact checking department. Every single fact, every quote, is checked. My editor told me that 75 errors is not uncommon for a good, well-written feature article.

A writer is not really capable of fact checking themselves, as they are too close to their own material and words.

A thought is for Cort to assemble a team of science professionals he respects on this board--I've seen references by some on here to being biologists, for instance (perhaps out of work now as sick), and put up a draft on a Google docs URL for a few days to get commentary. Opinion is out, facts are in. If he made a few factual errors they point out, he can go back to the source to clarify. Then he can publish. If people are pissed because he mentioned someone on "buzz" they don't like, too bad. That's not what I'm talking about. I'm talking about the fine parsing of scientific detail which, if you aren't the actual research scientists involved, you can sometimes get wrong. A little wrong is a lot wrong in science because even a tiny error is large.

It's one possible way to sort of fact-check, though it isn't equivalent to professional fact-checking.

People should go easy on Cort. It's not easy to assimilate all this data, and even the best science writers paid top dollar routinely make errors. He probably feels its incumbent on PR to digest the news.

Another option as well is occasionally have a guest article he invites that interprets new scientific findings.

Cort should choose these people among those who are smart and not argumentative.

It amazes me how much time people have to waste blathering on boards. And how all their despair and fury at being sick gets conveniently directed at online "monikers"--the invisible "others". It's not very graceful or considerate.

 

V99 is no longer a member of this Forum. I'm sure some people will be upset with that but it just got to be too much. It was my decision alone.

I have had numerous people complain about her style of posting and several people have intimated they will longer participate on the Forums if its going to be like this. The last straw came when someone asked me to remove his introductory story because he felt, given the way things are, that pieces of it could be used against him.

While many of V99's posts were initially fine she/he increasingly over the last few months refused to engage in constructive dialogue. In the end the effort to keep V99 engaged in the kind of conversation I, at least, am trying to promote here - was not worth it. If you would like to know what 'rules' she broke - the best would probably be something about engaging in behavior so disruptive to the peace of the Forums that I felt she was damaging them and creating the kind of environment that I (and others) do not want here.

I take complete responsibility for this - it was my decision alone.

Thank you Cort for making this decision, and for posting such a clear explanation. I agree with and fully support your decision.

 

Thank you jenbooks for an excellent expansion of the positive suggestion that has arisen; I have thought about this previously myself and I think it is a very good idea. My cautionary note would be that Cort writes a lot of (very good) articles and they are released in quite a timely fashion, and that a significant delay to publication would be a down-side.

As an alternative to a pre-selected group of reviewers (which would perfectly fine and I would volunteer to sort out the apostrophes), one option is to draft new articles within a members-only thread (in the same way as the research library is only available to members with a certain number of posts). That would raise the quality of the article when it is published online, and still give members access to the draft once it is written. It would also allow every member (over x posts) to comment, and remove the need to explicitly recruit proof-readers.

 

Answering on Cort's behalf, but I think that is quite legitimate to try to do...

a) Why do you refer to your blog article as a "paper"? When I read your comments on your own blog commenting on the scientific papers of Lombardi or Alter/Lo, its quite confusing. Its not common to call a blog post/article for a "paper".

The description of it as a "paper" came, I'm fairly sure, from a critical post earlier in the thread, by v99 I think. As is often the way with these things, it appears as though Cort has re-used that description in the heat of the argument and as an attempt to speak the same language as the person accusing him, and now it is used against him.

b) Its been a verbal fight going on. People are getting distressed. Thats not good. You try to solve this by using dictatorship. What makes you think this is a smart way of solving a situation like this?

References to dictatorship aren't welcome. I think people just need to get it into their heads that this is Cort's forum. The buck does stop, inevitably, with Cort, and he may run his forums in any way he sees fit (as may anyone else run their own) and as such he has to take these hard decisions in the interests of the comunity he has forged.

PS! Please change the title of the blog post - its just not common sense to call this different viruses. Unless you would like to educate the scientific community that HIV 1 and HIV 2 are different viruses.

Continuing to ask for the title to be changed continues to be annoying, given the long discussion we've had about it. I find the argument that it should be changed quite ridiculous.

Having an article with a title raising the question "4 viruses?", and exploring the detail of what that means, how accurate that is - this is not a disservice to the ME/CFS community.

Both Dr. Alter and Dr. Mikovits have referred to them as 'viruses'. Dr. Mikovits did so twice in her short public video response to Alter's paper. Why can't Cort use the word?